The End-of-Life Namaste Care Program for People with Dementia
Author: Simard, Joyce;
Date: 2023-01-15T00:00:00+00:00
Description: This innovative care program blends nursing care and meaningful activities to promote peaceful and relaxing end-of-life experiences for older adults with late-stage dementia. The first program created specifically for this hardest-to-serve population, Namaste Care also meets the latest regulatory guidelines for person-centered activity programming. The author has developed the program to be adaptable to individual as well as group settings, from nursing home to bedside at home. With this practical guide, skilled nursing facilities, assisted living settings, memory care communities, and hospice

Health Professions Press, Inc.

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Copyright © 2023 by Health Professions Press, Inc.

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Namaste Care™ and the Namaste Care logo are trademarks of Health Professions Press, Inc.

Interior, cover, and logo designs by Mindy Dunn and Erin Geoghegan.

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The information provided in this book is in no way meant to substitute for the advice or opinion of a medical, legal, or other professional or expert. This book is sold without warranties of any kind, express or implied, and the publisher and author disclaim any liability, loss, or damage caused by the contents of this book.

All case studies presented in this book are based on the author’s actual experiences, but the names and identifying details have been changed to protect privacy. Exceptions include Arden Courts; EPOCH Senior Living; Seasons Hospice and Palliative Care (now called AccentCare); Vermont Veterans Home; and Matthew and Celia Wilk, whose stories recounted in this book are real and whose permission for this use is gratefully acknowledged.

Library of Congress Cataloging-in-Publication Data

Names: Simard, Joyce, author. | Namaste Care (Program)

Title: The end of life namaste care program for people with dementia / Joyce Simard, M.S.W.

Description: Third edition. | Baltimore : Health Professions Press, [2022] | Includes bibliographical references and index.

Identifiers: LCCN 2022029817 (print) | LCCN 2022029818 (ebook) | ISBN 9781938870927 (paperback) | ISBN 9781938870934 (epub)

Subjects: LCSH: Alzheimer’s disease—Nursing. | Dementia—Nursing. | Terminal care. | Holistic nursing. | BISAC: HEALTH & FITNESS / Diseases & Conditions / Alzheimer’s & Dementia | MEDICAL / Terminal Care

Classification: LCC RC521 .S57 2022 (print) | LCC RC521 (ebook) | DDC 616.8/3110231—dc23/eng/20220713

LC record available at https://lccn.loc.gov/2022029817

LC ebook record available at https://lccn.loc.gov/2022029818

British Library Cataloguing in Publication data are available from the British Library.

Contents

About the Author

Foreword, by Rishi Jawaheer

Preface

Acknowledgments

Introduction: The Beginning

PART I. THE NEED FOR NAMASTE CARE

Chapter1What Is Namaste Care?

Chapter2End-of-Life Dementia Care and Hospice

PART II. NAMASTE CARE IN PRACTICE

Chapter3Beginning the Namaste Care Day

Chapter4The Namaste Care Group Program

Chapter5The Namaste Care Individual Program

Chapter6The Physical Setting

Chapter7Planning and Implementing Namaste Care

PART III. DEATH AND DYING CARE

Chapter8Quality of Life at the End of Life

Chapter9Making the Transition

Chapter 10After a Death

Appendixes

A. Namaste Care Nursing Supplies

B. Namaste Care Activity Supplies

C. Namaste Care Resources

D. Namaste Care Activities of Daily Living Checklist

E. Dementia Bill of Rights

F. Pain Assessment in Advanced Dementia (PAINAD) Scale

References

About the Author

Joyce Simard, M.S.W., has worked in the long-term care industry for more than 40 years. Now retired, she continues to offer online educational presentations throughout the world. She is also involved in research projects investigating the effects of Namaste Care™ in Australia and the United Kingdom. She earned her bachelor of arts degree in sociology and social work from Ithaca College in New York and her master of social work degree from the University of Minnesota.

In addition to Namaste Care, Simard has developed other programs for people with memory loss. The Memory Enhancement Program (MEP) is for people experiencing memory loss beyond what is normal for their age and education. Residents in independent living and assisted living communities, as well as those who participate in adult day programs, benefit from this unique program. The Club is a program for residents in nursing facilities and assisted living communities who have moderate memory loss. Its implementation has resulted in a decrease in use of antipsychotic medications, and in resident falls as well as improved staff and resident satisfaction.

Simard is an internationally recognized speaker to healthcare professionals in the United States, Europe, Australia, and parts of Asia. Whether speaking to families of people with dementia or as a keynote or featured speaker at professional conferences, Simard is known for bringing humor and a light touch to serious subjects, teaching through stories of real experiences from her years in healthcare. She also has provided in-service training on a variety of subjects, including hospice, bereavement, comfort care, and activity programs for people with all stages of dementia. Simard is the author of a children’s book about aging and dementia, The Magic Tape Recorder, which was published in several languages.

More information on any of the programs Joyce has developed may be found by emailing the author at joycesimard@earthlink.com.

Foreword

Writing the Foreword for this new edition of Joyce Simard’s book has given me the opportunity to reflect on the wonderful gifts and guidance I have had in my life and work. Growing up in England in the first care home my parents established, I was afforded a unique insight into the basic principles of respect, dignity, and compassion that underpin the delivery of care at all levels and in all settings. I was too young to appreciate it at the time, but in an environment where we lived with our residents, even welcoming extended family and school friends, I learned from my parents the essentials of putting other people first and celebrating their individuality.

Naturally, we form close bonds with the people we look after, so it can be hard when it is their time to leave us. At our care home, we sought support and guidance with palliative care at St. Christopher’s Hospice, which has a site nearby. This led us to our friendship with Min Stacpoole, a renowned specialist nurse in this field. When she introduced us to Namaste Care, we understood that many of its principles echoed those of my parents. For example, when giving personal care, it is important to talk to the person and explain what we are doing. This helps them to feel reassured and valued as a human being.

Min told us about Joyce, who had developed this amazing intervention. I was privileged to meet Joyce when she visited the United Kingdom in 2015. She inspired us at the Jawa Group of care homes to implement our own Namaste Care program, which has flourished in the years since then. Joyce has created something wonderful and impactful, with so much love pouring out of her that inspires and goes on inspiring everyone who embraces Namaste Care. I really believe Joyce and her husband Ladi are the Beyonce and Jay-Z of the care world, devoted to the service and improvement of the lives of others! What better gift could anyone give?

I took it upon myself to be Joyce’s global warrior and spread her beautiful message to as many people as we could reach. Namaste Care should not be kept a secret for those in the know. Implementation need not cost much, the approach can help everyone, and the results are priceless.

Jawa Group has long been in a position of providing advice and guidance to others in the care sector. We shared the Namaste Care approach and welcomed visitors from Singapore, Iceland, Greece, and the Netherlands to see for themselves what we had done with Joyce’s teaching. These efforts led to the birth of Namaste Care International (NCI), which now shares Joyce’s inspirational magic with members in many countries across the world.

One of the primary goals of NCI is to provide a structure to support new adopters of the intervention. We nominate Namaste Care Champions within each country to serve as a model and focal point for spreading this care approach. In regular online meetings for the Champions, Joyce and I facilitate discussion of relevant issues. In effect, we are a community support group on an international scale.

Another person who has played a key role in the development of NCI is Gillian Hensley-Gray, who has been a constant support to Joyce and me and has led the efforts to formalize the organization as a legal entity. She has also coordinated all our Namaste Care conferences to date, beginning with the first in 2018 that was held in our care home in London. It was an unforgettable day with tremendous buzz created by big-name speakers, overseas delegates, and lively breakout sessions. The 2019 conference was at London’s ORTUS Conference Centre, in the heart of the United Kingdom’s widest range of mental health institutions. In 2021, due to COVID-19, the event went online, but it included even more countries as well as representatives from the UK’s leading nursing journal, Nursing Times. We have been gratified by this growing interest.

NCI provides training to care services around the world, and in the UK has the endorsement of leading providers such as Care UK and Hallmark. We are also supporting further research and clinical trials in collaboration with the University of Lancaster and University of Worcester, including evidence-based research into the role of Namaste Care in reducing psychosis in people living with dementia. Our plans for the future include motivating additional countries to become involved and exploring new sectors in which we can introduce this approach to care.

The practice of Namaste Care continues to adapt, survive, and thrive as we have all had to adjust our practices and expectations in the post–COVID-19 world. This book includes essential discussions of dying and death and features the “No One Dies Alone” program. Besides clearly outlining how to create and manage a Namaste Care program, it includes international examples of Namaste Care programs and perspectives from countries around the world. As a guide for organizations and care partners wishing to adopt the Namaste Care program, this new edition of Joyce’s book is essential. It is quite simply invaluable.

Rishi Jawaheer

Director of Namaste Care International

Director, Jawa Group

CEO, CareVision CMS

Preface

“I have lost myself.”

AUGUSTE DETER

On November 4, 1906, Dr. Alois Alzheimer gave a lecture in which he described Auguste D., a 51-year-old woman with symptoms of a progressive, cognitive impairment. He had been puzzled that a woman so young exhibited symptoms usually seen in those much older. After the woman’s death in April of 1906, Alzheimer performed an autopsy on her brain to try to determine the reason for her unusual behavior. When the brain samples were placed under a microscope, he discovered the plaques and neurofibrillary tangles that are now recognized as the markers of the disease that ultimately was named after this researcher: Alzheimer’s disease. At the time, however, his lecture was virtually ignored by his colleagues, and the material was deemed “not appropriate for a publication” (Maurer, Volk, and Gerbaldo, 1997).

More than a hundred years after this lecture, Alzheimer is internationally recognized as the physician who discovered Alzheimer’s disease, a condition that, at this writing, affects 6.5 million Americans age 65 and older, costs the U.S. healthcare system more than $300 billion per year, and is the fifth leading cause of death among individuals age 65 and older (Alzheimer’s Association, 2022).

According to a quote taken from her medical records, Auguste Deter cried out to Dr. Alzheimer, “I have lost myself.” This lament is as relevant today to the millions of people struggling with Alzheimer’s disease as it was to this woman more than a century ago. Another entry in her files quotes her husband as being upset with his wife’s accusations of infidelity. Upsetting behavior such as this continues to distress present-day spouses, who are often bewildered by similar accusations. Unfortunately, the despair and confusion surrounding Alzheimer’s disease continue.

Auguste Deter was placed in a mental asylum. Today, thankfully, there are many more options for helping family members care for people with Alzheimer’s, including adult day services, home healthcare aides, housekeeping services, hospice, and respite care. This array of services provides support for the exhausting caregiving responsibilities that accompany Alzheimer’s disease. The need for these support services is real; according to the Alzheimer’s Association (2022), in 2021, family members and friends provided more than $271 billion in unpaid care to people living with dementia, and more than 60% of caregivers rate their emotional stress as very high.

If she lived today, perhaps Auguste Deter’s family would have been able to keep her at home for longer, or maybe she would have resided in an assisted living community that specialized in the care of people with mild and moderate dementia. When her dementia progressed to the point where she needed more care or her family could not afford for her to reside in an assisted living community, she could have spent the last years of her life in a skilled nursing facility with a memory care neighborhood. Hospice services might have been available in the last days or months of her life, and bereavement services may have been offered to her husband after her death.

From diagnosis to death, family and professional care partners now have access to a variety of services and information on the psychosocial and medical needs and treatments to help make life easier for people with Alzheimer’s disease. Books written by professionals, family members, and people with the disease are published on a regular basis. We know so much more now about how people with Alzheimer’s feel, how to help them live with the disease, and how to support their families.

Despite this increased attention, the experience of advanced dementia remains misunderstood and those who live with it underserved, regardless of whether they live at home or in a long-term care setting or are receiving hospice services. Nursing homes tend to focus on medical care for residents with advanced dementia (i.e., monitoring vital signs and dispensing medication). Residents with advanced dementia are well groomed, changed, and fed. But what is their quality of life? The same can be asked about residents in assisted living communities, as “aging in place” has increased the need for programming appropriate for people at each stage of dementia. Families are ill-informed about how to help their loved one in the final stages of the disease. As one physician put it in an address to hundreds of fellow physicians at a conference, “Without quality of life, quality of care doesn’t matter that much.” Namaste Care™ is all about quality of life.

NAMASTE CARE FOR PEOPLE WITH DEMENTIA

In some nursing facilities, residents with advanced dementia are grouped around the nursing station so that they can be observed. Others remain isolated in their rooms, as care home nurses often believe that the kindest way to care for residents with advanced dementia who are no longer ambulatory is to leave them in bed. These residents spend the rest of their lives in one room, alone for most of the day, their voices stilled by the disease. Because they can no longer cry out “I’m here” or “Help me,” they are easy to forget in the busy life of a nursing facility. In some respects, they become invisible.

Since the first edition of this book was published, the number of residents in assisted living communities with advanced dementia has increased dramatically. Assisted living regulations are state specific, and each state determines how physically and cognitively impaired a resident must be before he or she is moved to a nursing facility or the family is required to provide a private care assistant.

Namaste Care, which was originally developed as a small group program for nursing homes and then expanded to assisted living communities, is now brought to the bedside by hospice organizations as an individual program. In the United Kingdom, the Namaste Care Individual Program is also offered in the hospital as a small group or an individual program for dementia care—not just in hospice. This edition addresses the many different settings in which Namaste Care is used and provides detailed advice for adapting the care program as needed using either the group or the individual option.

People with advanced dementia living in any care setting deserve to be acknowledged, enjoy meaningful activities, be in the presence of others, and receive the loving-touch approach that is the foundation of Namaste Care. As Richard Taylor eloquently reminded us in his insightful book Alzheimer’s from the Inside Out, “I want and need to give and receive love. Even when I can’t remember your name, will you please love me?” Namaste Care is all about giving and receiving love.

I developed the Namaste Care program to bring an improved quality of life to nursing home residents in the last stages of Alzheimer’s. The Namaste Care program also removes the isolation surrounding many residents in other healthcare settings and invites them to be in the presence of others in a place that is peaceful, filled with soft music, and surrounded with feelings of love.

This book was written in the hope that you, the reader, will be inspired to enhance the care that is provided to residents, patients, family members, or clients with advanced dementia in whatever setting they call home. It also reflects a personal journey of mine over 40 years in healthcare. I wanted to provide easy-to-read, step-by-step advice on starting a Namaste Care program in your organization or using aspects of this approach in a home setting. Vignettes of actual experiences are woven into each of the chapters as examples of how Namaste Care works. If you work in healthcare, you have no doubt experienced the humorous side of our work that makes a sometimes-difficult job less stressful. I hope that you will smile as you read about some of my less-than-stellar ideas and resident encounters.

NAMASTE CARE AROUND THE WORLD

When this book was first published, I never dreamed that Namaste Care would be used internationally, but it is now offered in 12 countries. This third edition of the book incorporates lessons from the customs and settings of many different countries. For instance, in the United States, a certified nursing assistant usually leads the program. In other countries, the program leader changes—one day a nursing assistant takes on the role, other days someone from the activity department. In some homes, volunteers lead the program.

Because the program is now international, I use the term Namaste Carer as the title of the person leading the group program. In the United States, we call people living in nursing homes and assisted living communities residents. In other countries, these people are referred to other ways. For this edition of the book, I refer to anyone living in a home setting as a resident. As in the second edition, I refer to the staff who work in a healthcare organization primarily as team members to heighten the awareness that indeed it “takes a village” to provide quality care.

The people and organizations whose work is described in this book are committed to providing a high quality of care. They are often the unsung heroes who go more than the extra mile for the residents they care for and care about. This book sings their praises and acknowledges their excellent work.

One such unsung hero is Lorna Reid, who is now the lead for education at the Prince and Princess of Wales Hospice in the United Kingdom. When she was education liaison nurse for ACCORD Hospice in Scotland, Lorna asked me to lead a workshop for care homes and hospice staff. As the program ended, she read the following:

“Do for one what you wish you could do for everyone.” [quote from Andy Stanley, pastor, author, and founder of North Point Ministries, Inc.] I can’t change the world on my own, but I can do for one what I wish I could do for everyone. In fact, that is the story of the hospice movement, which started with one nurse, turned social worker, turned physician, who encountered one patient. As the result of that encounter, she (Dame Cicely Saunders) set out on a journey to create a place where she could give to one group of people what she wished she could do for every group. One led to two which led to hundreds which led to thousands. And now hospice influences the care of people all over the world. So, I’m not going to let myself get overwhelmed. As long as I am able, I will keep on doing for one group what I wish I could do for every group. Maybe you will be encouraged to do the same.

And so, for as long as I am able, I too will not let myself get overwhelmed. I will offer to teach Namaste Care to one person or one group what I wish I could teach to everyone. I will teach Namaste Care to people in one country what I wish I could teach to people all over the world. And, gradually, I hope and pray that the standards for quality of life for people with advanced dementia will improve.

Maybe you will be encouraged to do the same.

Acknowledgments

In the years since the last edition of Namaste Care was published, many more people have supported and offered my program in many countries and in a variety of settings. I am overwhelmed by the response to what I thought was a small group program for nursing homes in the United States. Jo Hockley and Min Stacpoole helped me with the first research project in the United Kingdom, and they continue to teach and support Namaste Care whenever asked.

Rishi Jawaheer, who owns care homes in the United Kingdom and attended a Namaste Care Education Day at St. Christopher’s Hospice, immediately started Namaste Care in his care home. Subsequently, he launched Namaste Care International. This organization has Namaste Champions in ten countries, including one representing hospitals and another hospice organizations. Rishi, you are a blessing.

Russell Hilliard was the first person to recognize that Namaste Care could also be offered to hospice patients. His interest was the incentive I needed to develop the Individual Namaste Care Program. Russell is now Senior VP, Market Expansion Initiatives AccentCare, formerly Seasons Hospice and Palliative Care. He continues to support Namaste Care and is a joy to work with.

St. Christopher’s Hospice in the United Kingdom, first hospice in the world, embraced Namaste Care after some of the staff heard me speak. Training is offered at St. Christopher’s several times a year. One of the nurses who was caring for Dame Cicely Saunders, the founder of the first modern hospice, told me that she had asked Dame Saunders what she would change about her hospice work if she could. Dame Saunders replied that she would have paid more attention to patients with dementia.

My husband, Ladislav Volicer, has always supported me though this amazing journey. Both in our 80s as I write, he continues to be by my side and encourages me to keep on this journey. I love you, Ladi!

At the behest of my publisher, Health Professions Press (HPP), I was asked to write and revise this third edition. Linda Francis has overseen this project and I appreciate her patience and helpfulness. From the first edition to this third one, HPP’s Director of Publications Mary Magnus has continued to encourage and support me.

Given all the support I have received for this work over the years, these acknowledgments could be as long as the book or perhaps longer. I cannot recognize everyone, so if your name is not here, please know it is in my heart.

Namaste, Joyce

Introduction: The Beginning

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

ROBERT FROST

We never know how our lives will be shaped by events that initially seem insignificant but are actually profound turning points. My first interview for a social work position took place in Ithaca, New York, in 1978. Walking into a very old nursing home, formerly a rehabilitation center for children with polio, I remember thinking, “This is not for me; I really want a job, but definitely not with older people. This will have to be a temporary position.” My adult life had revolved around children, four of my own and many foster babies. I believed that my social work career would focus on young people, perhaps in the area of foster care, an area that I knew about. I desperately wanted to make a difference. Children had a long future in front of them, whereas the residents here were nearing the end of their lives. Among my peers, the nursing home was not high on the list of sought-after social work positions. But as I have learned, sometimes the hard way, life has a way of leading you down the “road less traveled.”

As part of my interview, the administrator, Michael Apa, gave me a tour. We walked around the first floor, where residents were being gathered for lunch. Mr. Apa asked me to help transport residents into the dining room, and I readily agreed. My first efforts to move a wheelchair did not work. Tugging and then trying to lift it produced no forward movement. No one told me that wheelchairs have brakes. Needless to say, this new social worker had a lot to learn!

Despite my ineptness, I was hired and began a career that would turn out to be my life’s work, my mission, and my joy. The main responsibility for a social worker in that setting was admissions—keeping the beds full. Then, because of my eagerness to get to know residents and the lack of time available to spend visiting each person, I began to lead groups. My first group was for residents’ families because I realized that many of them were struggling with feelings of guilt about having placed their loved ones in a nursing home. I also led a discharge-planning group for people who were returning home and a newcomers’ group for newly admitted residents. Residents in my groups were alert, oriented, and able to express themselves, and I felt that my social work skills were being put to good use. Although we must have had residents with dementia, I do not remember working with them. It was not until 1979, when our family was transferred to Minnesota, that my interest in residents with dementia surfaced.

EARLY CHALLENGES IN DEMENTIA CARE

While working at Westwood Nursing Home in Saint Louis Park, Minnesota, I became aware of the symptoms of what is now known as Alzheimer’s disease or a related dementia. At that time, residents were diagnosed with senile dementia, presenile dementia, or organic brain syndrome. Sometimes the medical records completely ignored the symptoms of memory loss and just addressed the person’s medical problems. Social workers did not enjoy working with these residents because they could not use their counseling skills, and the nursing staff were frustrated when the residents did not listen or follow directions. Despite being told not to go into other residents’ rooms, they often did. Some wandered aimlessly or tried to leave the facility; occasionally they disrobed in public areas.

Because of this “bizarre” behavior (yes, that is what we called behavior that we now know as symptomatic of dementia), we placed these residents on the second floor. In fact, they were hidden from the tours we gave to families. No one wanted a prospective family to be frightened by the residents’ behaviors and choose another nursing home for their loved one. We also thought that by placing residents who were at risk for elopement on the second floor, they would be safer. As I recall, the doors leading to the stairs were alarmed, and most residents could not figure out how to use the elevator, so the second floor seemed to be the best option for them.

Second-floor residents were labeled as having behavioral problems or being combative. The solution was to medicate them “for their own good.” When they were at risk of falling, we restrained them in geriatric chairs (also known as geri-chairs). They would, of course, pound on the trays that restrained them and call out for help. So, to keep these residents quiet and “happy,” we medicated them. If the medications did not work, we sent residents to the psychiatric unit of the local hospital. They returned disoriented and subdued because of all the medication they had been given. I shudder when I look back on how well intentioned we were then and feel relief at how far we have now come. Today, we know that medication is usually not the answer for residents who are upset or agitated, and that “combativeness,” now referred to as rejection of care, is usually caused by care partners who do not know how to offer care to someone with dementia.

The nursing home had a good reputation; we provided what was, at the time, considered good custodial care for residents with memory loss. Their clothes were kept clean and they were groomed, bathed, fed, and attended to medically. However, few activity programs were offered to second-floor residents, and for the most part, they were placed in front of a television set. Residents who were oriented appreciated being involved in activities and were vocal about wanting to keep busy and have regular entertainment. It was easier and more rewarding to design activities for the residents who actively participated, so most activity programs were tailored to this group. The second-floor residents were taken to music and religious programs on the first floor, but they often slept through the programs because of the many medications they were taking. It is hard to believe that in those first years of my career, so little information and almost no resources were available to develop programs for residents who had memory loss.

Counseling residents with severe memory loss was impossible. My social work training never addressed how to provide services to people with memory impairment. As Director of Social Services, I let my staff choose what floor they wanted to work on, where they would provide social services to residents and families. I ended up working on the second floor. With little understanding of why a resident could not remember that her mother had died years ago or that she did not have to go home to care for her children, who were now grown, I was mystified about how to provide social work services to the residents on my floor. As I describe in Chapter 2, I was not alone in being uncertain about how to approach people with dementia. The whole field was beginning to shift, along with my own understanding.

ROOTS OF NAMASTE CARE™

Namaste Care™ was created in the spring of 2003, but the seeds had been planted years before. In 1981, while I was getting my master’s degree in social work at the University of Minnesota and working part time in Westwood Nursing Home, I crossed paths with Robert Fulton, a sociology professor who had studied in London with Dame Cicely Saunders, the founder of the modern hospice movement. He offered a course on the hospice movement that introduced me to this special way of caring for people who are dying.

My first thought was that hospice was a great concept for residents in nursing facilities who were dying and in varying levels of pain, or who just seemed uncomfortable. At that time, pain management was not as well understood as it is today, and pain medication was not administered until the resident complained. Then, the medication took some time to take effect, and it was not administered again until the pain reappeared. This vicious circle of pain kept many residents uncomfortable for hours of the day and night. Nurses were also reluctant to give adequate doses of morphine because they feared it would hasten death or create an addiction.

The first Medicare hospice benefit required the person to have a home and a caregiver. The nursing home and the staff did not qualify on either count, so I worked with the nursing home’s staff to develop a hospice-like approach that we could implement ourselves. With Professor Fulton’s support and with guidance from the local hospice organization, we began our own end-of-life care. This would not have happened without the dynamic leadership of administrator Cheryl Nybo, fellow social worker Michael McDonough, and the great staff at Westwood Nursing Home. This incredible team believed that people should not die alone and in pain, so we changed the way our residents spent their last days. Hospice nurses helped with pain management based on what we knew about decreasing pain at that time. We also recruited alert, oriented residents to sit by the bedsides of dying residents and provide comfort.

Sitting by the Bedside

A time-honored tradition for the older generation was sitting by the bedside of people who were dying; they did not fear it. One resident told me that in doing this service, she finally felt worthwhile—that she still could do something that mattered. I’ll never forget the look on her face as she struggled into the room with her walker to take her turn at the bedside of a resident who was dying. The resident volunteer was very frail. At my suggestion that maybe this was too much for her, she pulled herself up to her full height of 4 feet, 2 inches to declare that she was perfectly capable of sitting by the bedside and that I should mind my own business. I quickly backed out of the room.

Dan Buettner (2009) writes about people 100 years of age or older, from around the world, who do not have memory loss. One of the most important commonalities among these people was that everyone had a reason to get up every morning. Their lives still had purpose. A volunteer can sit by the bedside of someone who is dying, visit a person who has a terminal diagnosis wherever that individual is living, and provide respite for families and frustrated care partners who just cannot find time to be with a resident who is dying. When older adults volunteer to be with the resident during the dying process, this practice not only supports struggling care homes that have a shortage of staff, but also may help the volunteer to live a longer and happier life.

Sheila Gordon, former care director at the Saskatoon Convalescent Home in Canada, was very creative in recruiting a resident who was quite upset that her family had admitted her to the care home. The resident was so angry that she would not leave her room for meals or activities. One morning after breakfast, Sheila arrived in her room and told the resident that someone at the home had no family or anyone to visit her. Would she please volunteer to visit this lonely resident? Sheila had a volunteer nametag made and, not waiting for a “no,” pinned it on the resident’s blouse and escorted her to the Namaste Care room. Because this resident now felt needed, she became a daily Namaste Care volunteer. Now, she felt as if she had a reason to get up every day.

At Westwood Nursing Home, we not only asked residents to sit by the bedside of a person who was actively dying, but also enlisted everyone’s help in supporting residents who had no family or friends with them during the dying process. Team members were encouraged to do their charting and other paperwork (this was when paperwork was on paper!) by the bedside of a resident who was dying. Now most of the “paperwork” is on a computer or tablet, which can also be taken to the bedside of residents who are actively dying and alone. The dietary department made popsicles and purchased good-sized lollipops for the residents to suck. This helped to prevent dry mouth, which can be a problem at the end of life. In one facility, the maintenance director took his truck to a resident’s house, packed up her china cabinet with figurines she had collected all her life, and reassembled it in her room so that she could spend her last days looking at her treasures. One resident wanted to attend religious services but was in too much pain to leave her bed, so staff members pushed her, bed and all, to the service.

We were very creative in helping our residents live their last days peacefully, with someone sitting by their bedside whenever possible. Some care homes and hospitals have a “No One Dies Alone” program (e.g., https://noda.jhu.edu/). See Chapter 9 for more information on No One Dies Alone.

Evolution of Hospice for People with Dementia

In the United States, hospice organizations are the main source of caregiving for people with 6 months or less to live if the disease follows its normal progression. When the Medicare hospice benefit was originally enacted, the typical patient had cancer, was verbal, and could express feelings about dying and choose to receive hospice services. A person with a diagnosis of an irreversible dementia was not considered appropriate for receiving hospice services. That belief has changed. We now know that conversation at the end of life is not necessary and may not be desired; many people just want to know that someone is there and that they are not alone.

The Medicare hospice benefit was changed in 1983 so that nursing homes and assisted living communities would qualify as “homes” and staff as “caregivers” (National Archives, 1983). Residents in long-term care now qualified to receive hospice services. However, few residents or their families elected to use the benefit. Hospice workers were familiar with people who had cancer—the primary diagnosis at that time—and who were alert and oriented, but they were not comfortable providing physical or emotional care to residents with dementia. My attempts to get my employers interested in encouraging hospice care in our communities were never very successful.

In 1994, I crossed paths with Ladislav Volicer, Clinical Director of the Geriatric Research, Education, and Clinical Center at the Edith Nourse Rogers Memorial Veterans Hospital in Bedford, Massachusetts. Volicer was Medical Director of the Dementia Special Care Unit and pioneered the hospice approach to care for patients with advanced dementia. His research has systematically evaluated the effects of palliative care options and has led to the development of policies to guide hospice care that have affected U.S. public policy and the Medicare hospice benefit for people with advanced dementia. Volicer is a recognized expert in many medical aspects of palliative care. (Perhaps I should disclose my relationship with Volicer: I married him!)

Using the work of Volicer and his colleagues, we developed the Bethany Program for Hillhaven, a very large nursing-home company (now closed). Under the guidance of Nancy Orr-Rainey, we tried with limited success to interest our nursing facilities and the local hospice organization in forming a partnership. We included residents with dementia among those we believed would qualify for the Medicare hospice benefit, but at that time the number of residents with advanced dementia who qualified was low because advanced dementia was not an accepted diagnosis under the hospice benefit.

Unfortunately, it is still difficult to get anyone with the primary diagnosis of Alzheimer’s disease accepted for hospice care. The requirement for doctors to make a prognosis of “6 months or less to live” can limit referrals of patients with an irreversible dementia to hospice. Many physicians are not as enlightened as Volicer; they believe that hospice care for someone with dementia is a waste of taxpayers’ money. This is just one of many ongoing battles for people who have Alzheimer’s disease. Hospice organizations, however, are now seeing the need to serve people with dementia and educate staff about the unique needs of these individuals. Currently, 48% of people dying with dementia are given hospice care before they die, and 18% of hospice patients had a primary diagnosis of Alzheimer’s dementia as of 2018 (Alzheimer’s Association, 2022).

BIRTH OF THE NAMASTE CARE PROGRAM

In 2001, I began to consult with the Vermont Veterans’ Home, a nursing home in Bennington, Vermont. My role as a consultant was to develop a unique program for residents on the secured dementia unit. The first program we developed was The Club, a program of continuous activities. The Club has shown that helping residents to engage in meaningful activities throughout their waking hours makes an impact on their lives and produces positive results (Simard & Volicer, 2002). The Club helped to decrease falls, the use of psychotropic medication, and social isolation. Residents gained weight, and staff and family satisfaction significantly increased. The Club also helped to fill empty beds. The unit filled quickly and began to boast a waiting list.

Even when a resident’s disease was so advanced that the person did not seem to benefit from the continuous programming, families did not want residents to leave the unit. C Wing had become special not only because of its excellent care, but also because of The Club. We needed to create another special program that would offer a different type of programming for residents who could no longer actively participate in or benefit from The Club. Perhaps another program would entice families to move their loved ones off C Wing.

The administrator at the Bennington facility, Earle Hollings, asked me to create a unique program for residents with advanced dementia. His vision was to expand the dementia program without simply re-creating another club. A wing on another unit became the location for the new program that we called Namaste. The word Namaste, pronounced “nah-ma-stā,” is a Hindu/Indian greeting. After learning that the word meant “to honor the spirit within,” I knew that I had found the perfect name. When the program started in Bennington, we just called it “Namaste”; however, when I first wrote this book, I learned that the word Namaste alone is considered common usage and is not unique enough to be trademarked. So we added the word Care, and that is how Namaste Care got its name!

With no budget—only an admonition to keep the costs as low as possible—we started Namaste in an activity room made to look less institutional with Goodwill furniture and donations of plants, quilts, and other old but interesting items. Thanks to the insight and talents of Mary Longtin, the first dedicated Namaste Carer, the Namaste program began. Staff and residents’ families who were involved in this first Namaste program were so pleased that we realized the program needed to be spread beyond the confines of this one facility. Christina Cosgrove, Michael Burgess, Volicer, and I began speaking about the program at conferences. Volicer and I spoke about Namaste in Australia, and shortly after our presentation, the Western Sydney School of Nursing and Midwifery received a grant to study the outcomes of Namaste Care. This was the first of several international grants that continue to study various aspects of our program. A list of the universities and other organizations that have studied or are studying various aspects of Namaste Care can be found in Appendix C.

Namaste Care Today

Years ago, I did not imagine that this simple little program, located in one nursing home in the state of Vermont, could spread as far as it has today. Namaste Care programs can now be found in nursing homes, assisted living communities, residential care homes, and hospice organizations. The program is offered not only to people with advanced dementia, but also to people who would simply benefit from its simple principles of a loving-touch approach to care and a calm, soothing environment.

Much to my amazement and delight, Namaste Care programs can now be found all over the world. In 2018, Namaste Care International was founded in the United Kingdom (http://namastecareinternational.co.uk/about.php). As of 2022, Namaste Care can be found in 12 countries.

Teach Me to Die

Teach me to die

Hold on to my hand

I have so many questions

Things I don’t understand

Teach me to die

Give me all you can give

If you’ll teach me of dying

I will teach you to live

Deanna Edwards

PART I

The Need for Namaste Care

This section of the book introduces Namaste Care and its relevance in hospice settings. Chapter 1 provides an overview of the overall approach and of the group and individual programs. Chapter 2 presents a history of hospice and its use in caring for people with dementia.

CHAPTER 1

What Is Namaste Care?

I honor the place in you in which the entire Universe dwells.
I honor the place in you which is of love, of truth, of light and of peace.
When you are in that place in you, and I am in that place in me, we are one.

TRANSLATIONS OF NAMASTE

It is difficult to travel around India and not hear the word Namaste many times as friends, and often strangers, greet each other. In the United States, many people know the word from taking yoga classes. At the end of a class, yoga instructors often say “Namaste.” When the word is spoken in India and in a yoga class, two hands are pressed together and held near the heart. The head is gently bowed as the person says, “Namaste.” The word Namaste expresses a wish to honor the spirit within and was selected as the name of my program, as all aspects of Namaste Care™ honor the person receiving and offering the program.

PHILOSOPHY AND MISSION STATEMENT OF NAMASTE CARE

The foundation of any program is an idea, a philosophy. The Namaste Care philosophy emphasizes that the spirit of people with advanced dementia still lives. We see the spirit in their eyes, smiles, and their positive response to interactions offered with a loving touch in a calm environment. This is the spirit that is undaunted by disease, the spirit beyond the disease. It is the essence of a person. The Namaste Care™ Philosophy Statement is as follows:

We believe that the spirit in each person lives, regardless of their physical and cognitive status, and that it is possible to nurture this spirit in each individual through loving touch and meaningful activities. This spirit thrives when people are in the presence of others in a calm environment.

A philosophy is what you believe; the mission statement is what you do. The essence of the Namaste Care™ Mission Statement is as follows:

Namaste Care is provided by an interdisciplinary team of compassionate and knowledgeable healthcare professionals as well as families and friends. A holistic approach to care ensures that the burdens and benefits of each medical intervention or treatment are well thought out so that they support each person’s quality of life. Comfort and pleasure are the goals of Namaste Care. Every effort is made so that quality-of-life experiences are offered every day throughout a person’s time in Namaste Care. The entire team will also do everything possible in the person’s final stage of life to ensure the dying process is a pain-free, easy passing surrounded by people who care.

This is a sample mission statement, but I urge each organization offering Namaste Care to create their own. It can be a statement written by Namaste Carers assigned to the program. Barbara Holmes and Janet Gilmour, the two Namaste Carers at the former EPOCH Senior Healthcare of Brewster, Massachusetts, wrote a mission statement for their Namaste Care program that was hung on the wall near the entrance to the Namaste Care room. It is simple yet eloquent:

Namaste Care Mission

To embrace our most vulnerable and provide them with a sense of comfort, calmness and serenity because their lives are still relevant.
Love Is Our Religion

If the Namaste Care room is located in a care home dedicated to people with Alzheimer’s disease, all team members responsible for their care should be involved in writing the mission statement, with someone designated as a facilitator. When I am the facilitator, I schedule team member meetings for each shift and include all care partners, including housekeeping, maintenance, dietary, and activities staff as well as auxiliary team members assigned to any aspect of care. It is more effective to hold these meetings after Namaste Care has been in place for a few weeks so that team members can actually see the program and experience the changes they observe in the participants. At the meetings, I use a flip chart or wipe-off board to write what they say about the program and their goals for people in Namaste Care. I try to capture the words and sentences team members suggest and ensure that I have captured their thoughts correctly. After I have reached as many team members as possible, I draft their mission statement, using as many of their words as I can. The draft mission statement is then passed out to all team members. They are asked for feedback, and then I make changes based on their comments. When the mission statement has been approved by the majority of the team, it is presented to the administrator or person in charge for approval.

The final mission statement is printed on high-quality paper and framed with a wide mat. Each team member signs the matting. The framed mission statement is hung on the wall of the Namaste Care room, serving as a reminder to all that they are entering a special place. Copies are given to all new team members. In the United States, people are officially hired after the 90-day probation period in many states. After that period, they are asked to sign the matting as a symbol of their commitment to Namaste Care.

PRINCIPLES OF NAMASTE CARE

Two elements of Namaste Care are fundamental to the program, in both its group and individual forms: the Namaste Care environment and a loving-touch approach.

Namaste Care Environment

The Namaste Care program takes place in a carefully orchestrated environment that is as free from distractions as possible. Lights are lowered; calming music plays; and a culturally appropriate scent, often lavender, permeates the air. When people enter the Namaste Care room, they should feel as if they are enveloped in a calm, soothing environment, like being wrapped in a cocoon. Creating the ambience for the daily program includes playing appropriate music, infusing the room with a soothing scent, and setting the lights to help create a soft and pleasant aura. These three elements are to be in place before anyone enters the room. The Namaste Care room is described in detail in Chapter 3.

Loving-Touch Approach

A loving-touch, unhurried approach is used in all interactions between the person offering Namaste Care activities and the person taking part in them. The Namaste Care loving-touch approach to all interactions is an around-the-clock way of providing care that fills each person’s day with opportunities to engage in meaningful activities. Team members, including management, interact with the people in their care and honor them as unique individuals. This approach is often referred to as person-centered care.

Each day is filled with planned and unplanned activities, including all of the interactions that allow everyone to be present for people through a loving touch and gentle conversation. These moments are an opportunity for team members to experience meaningful connections and see the positive responses from taking time to communicate with everyone in the care home—other team members, the people living there, residents’ families, and visitors. The Namaste Care approach is always unhurried; people with advanced dementia will communicate with their eyes, body language, and sounds because their ability to speak is usually severely impaired. I have found that communicating at eye level and taking time with a person who is nonverbal often produces a smile and the three small but important words, “I love you.”

The loving-touch approach changes the way of providing activities of daily living (ADLs). ADLs become more than tasks to complete daily care, such as getting a person dressed or groomed for the day. Rather, ADLs are an opportunity to connect in meaningful ways for both the caregiver and the person receiving the care. One of the care partners I worked with uses a very thoughtful way of getting a man to sit up in bed. Rather than struggling to help him get up when he is lying in bed or have the bed electronically put him in a sitting position, she simply asks for a big hug. As he puts his arms around her, she is able to gently pull him to a sitting position. Then, she thanks him for the best hug she has had all day.

During the COVID-19 pandemic, group programs in many care homes and assisted living communities were discontinued. I encouraged these facilities to offer residents Namaste Care bed baths. In this activity, nursing assistants show residents their clean clothes, soap, and other items to help them understand that they would be receiving a bath. Beautiful music is played, the scent of lavender is sprayed on the blankets, and the bath is offered with a loving-touch approach. The nursing assistant talks to the resident throughout the bath, helping the individual to feel comfortable as this very personal care is offered. When finished, the nursing assistant dresses the person in clean clothing and completes the Namaste Care bed bath with caring words and a handshake or a hug.

I did not realize just how powerful a loving-touch approach to care was until I started seeing the positive changes in people’s behaviors and their verbal responses when team members took the time to be present for them. When they slowed down as they provided care, stopped to visit with the residents, and showed the love that they feel in their hearts, the miracles began (Simard, 2012a). People who had ceased speaking in sentences would spontaneously blurt out “I love you” or simply “thank you.” Their smiles replaced tears or sad faces, and resistance to care disappeared (Simard, 2012b). And it was so simple; team members just slowed down and showed their love. Loving touch is one of the principles of Namaste Care and becomes the thread that weaves the fabric of each day.

NAMASTE CARE OUTCOMES

Several universities have initiated studies to look at the components and outcomes of Namaste Care (see Appendix C). Studies have found that family and staff satisfaction increased in care homes providing Namaste Care. Other outcomes included a decrease in the use of antipsychotics as agitation and anxiety declined. Participants in Namaste Care programs had improved mood and communication skills.

OVERVIEW OF THE NAMASTE CARE GROUP PROGRAM

Namaste Care began as a small group program for people with advanced dementia. This program is designed for residents or clients with advanced dementia who can no longer participate in traditional activities such as book clubs or discussions of current events. The group size is usually small, with no more than 10 residents attending. The morning program begins after the resident has had breakfast. When the group is part of a day center, it may be scheduled at various times during the day. A team member can be responsible for the program most days, or this position can be rotated so that many team members have an opportunity to be the Namaste Carer. Family members or volunteers who have received special education on medical issues, such as infection control and regulations governing the organization, may also lead the program.

The Group Setting

In most settings, the Namaste Care program takes place in a room or space that is as free from distractions as possible. Soothing music is played, and the scent of lavender or another scent that reflects the season or cultural preferences permeates the room. The décor is warm, inviting, and homelike. One family member described coming into the Namaste Care room as being enveloped by a giant hug.

If the space is used for other purposes (e.g., dining room), items like tablecloths and flowers may be used to stage the space for the Namaste Care program. Supplies are gathered before the room is opened so that people in the group are never left alone.

The Group Program Process

All team members are responsible for bringing residents to the Namaste Care room. They are also asked to help the Namaste Carer transfer people from wheelchairs that do not recline to a chair that can be adjusted so that the residents are comfortable. Each resident has a special quilt or blanket that is meaningful to the person. For example, one man had a blanket decorated with his alma mater’s colors and the school flag, and a woman who loves hats had a quilt with hats decorating it and a favorite hat placed on her head when she was welcomed to the Namaste Care room. All quilts or personal items are kept in a plastic bag with the resident’s name on it and are regularly laundered. People participating in Namaste Care have a small bag with combs, brushes, and any other items they enjoy. Hair ornaments and makeup are kept in the person’s own bag for infection-control purposes. Emery boards for nail care are also stored in the bags so that these items are not shared.

Residents may attend the Namaste Care program for the entire day or part of the day, depending on their physical status. Family members and friends are encouraged to visit the Namaste Care room and become part of the program by giving their loved ones a hand massage, brushing their hair, or helping them eat snacks or drink a favorite beverage. Some families just enjoy holding hands with their loved ones and talking to other families in the room, especially when their family member is nonverbal. Namaste Carers often report that family visits are longer and that some families volunteer to spend time with people who do not have visitors. Occasionally families will take their loved ones out of the room for a stroll outside, or they visit in their rooms for some private time. Families and team members are encouraged to come into the Namaste Care room anytime they wish. Medications may be dispensed to residents in the room if it can be done respectfully. Other medical procedures are to be provided in the privacy of people’s rooms.

The Namaste Care Approach to Daily Activities

“Honoring the spirit within” begins upon the resident’s arrival to the Namaste Care program. Residents are greeted in a person-centered way that honors each individual’s preferences. A retired physician may prefer to be greeted with a handshake and addressed as “Doctor,” whereas “Grandma” may be comfortable with a hug. Each person is offered a beverage after entering the room. Quilts or soft blankets are tucked around the resident so that the person feels warm and secure. Shoes may be replaced with warm, soft socks; belts are removed or loosened; and pillows are placed around the person for comfort.

Morning activities are offered with a loving-touch approach and may include a gentle washing of the face and moisturizing with face cream. Pond’s is a favorite; residents often remember the jar, as it has not changed much since it was first introduced. Hair is gently brushed, or the scalp is massaged. All activities take place while the Namaste Carer talks gently to the resident.

Before lunch, the Namaste Carer changes the energy in the room to provide more stimulation, so that everyone is awake and more alert for lunch. Lights are brightened, and dance music from the 1940s is played. Fun sensory objects, such as realistic-looking birds that chirp, wind chimes, puppets, and seasonal or holiday items, are shown to the participants. Namaste Carers show natural items to help everyone relate to the current season. I have seen Namaste Carers bring in freshly cut grass during the summer, as the smell is familiar to many residents. Seasonal flowers or leaves that change colors in the fall are natural reminders of the current season. One wintry day in a Massachusetts (United States) care home, a creative Namaste Carer asked me to stay with the residents while she left the room. She returned with several basins of snow that she placed on the residents’ laps. I will never forget the expressions of glee on their faces as they tried to make snowballs! Even with advanced dementia, people can continue to have fun.

The program closes about 15 or 20 minutes before lunch. As residents leave the Namaste Care room, each person is thanked for attending and invited back for the afternoon program. In a care home, care partners take people to their rooms to be toileted and changed before they are taken to the dining room. After lunch, some residents are taken back to their rooms and placed in bed. Most residents, however, return to the Namaste Care room for the afternoon session. If they need a nap, residents can sleep in the Namaste Care room, where they are not isolated as they would be in their rooms.

People are welcomed to the Namaste Care group in the afternoon as graciously as they were welcomed in the morning, with a hug or handshake. They are assessed for pain, offered a beverage, and wrapped in their special blanket or quilt. In some programs, a large-screen television shows scenes from the rainforest or children playing. Some programs in the United Kingdom play videos of the royal family. In Iceland, films show the beautiful thermal springs and glaciers. Every country has videos showcasing interesting sights and images. YouTube is a wonderful resource to use, and it is free!

Those who did not attend the morning program have their faces and hands washed and moisturized and their hair brushed. People who did attend the morning program are offered activities that are different from what they received earlier in the day. They may have their feet soaked and lotion applied to their feet and legs.

An hour before dinner, the lights are brightened and residents are placed in a circle. The Namaste Carer is in the center of the circle and leads gentle physical exercises. To help residents with advanced dementia to exercise, the Namaste Carer might put on military music and ask everyone to march and salute. Using a variety of music, the Namaste Carer can encourage everyone to have fun by reaching up to paint the ceiling, stir the soup, or rock the baby. If a resident is unable to lift the arms, the Namaste Carer gently lifts them, making sure this is not painful for the person. Whenever possible, a physical therapist assesses each person attending the Namaste Care group and offers ideas of what exercises are appropriate for each resident.

When the exercise activity is over, the Namaste Carer prepares each resident to leave for dinner (or, in an adult day program, to go home) by removing the blankets and quilts and storing them for the next day. As residents leave the room, the Namaste Carer thanks each person for being part of the group and says a few caring words that honor each individual. One resident is complimented for having the best smile, another the prettiest hair. Each resident is offered a hug or handshake before being taken to dinner.

The room is tidied for the next day, paperwork is completed, and the Namaste Care Group Program has come to an end. Chapter 4 presents an in-depth description of the program.

Management of Pain and Medications

Quality of life is impossible if a resident is not comfortable and pain free. Each resident is assessed for comfort upon entering the Namaste Care room for the morning and afternoon programs. Various assessment tools are used, but the most important is the judgment of the Namaste Carer, who knows the people participating in the program and recognizes when someone appears to be uncomfortable or in pain. Nursing staff are immediately notified if the Namaste Carer suspects that the resident is in pain or is experiencing any distress. Residents can be assessed for pain or discomfort using the PAINAD Scale (see Appendix F). This scale was developed to assess pain in anyone with advanced dementia.

People who receive psychoactive medications and antidepressants are assessed by nursing staff for changes in behavior. People who are on psychoactive medication for behavioral health symptoms or depression show positive changes when participating in Namaste Care. Nursing staff should regularly visit the Namaste Care program to see the person receiving these drugs and speak with the Namaste Carer to assess the possibility of discontinuing these medications.

Other Considerations for Health, Nutrition, and Safety

Residents with advanced dementia are often dehydrated, resulting in urinary tract infections. Beverages are offered to each resident continuously throughout the morning and afternoon programs. These beverages include a variety of juices, water, or whatever is appropriate for a resident’s culture and personal preferences. For instance, in Namaste Care programs in Singapore, warm water or weak tea is served. In Iceland, the preferred sweet is a small piece of chocolate. In many countries, people with advanced dementia often will not eat the food they are served for meals, but they continue to enjoy sweets like ice cream and puddings that are served during the Namaste Care program. People who are not in danger of choking may also enjoy sucking on a lollipop. A list of people attending Namaste Care with diet restrictions or swallowing difficulties is always kept current and available to the Namaste Carer.

Whenever possible, an assessment from a physical therapist can ensure proper positioning and help determine appropriate exercises for different residents. Unless there is an infection problem, all activities are offered skin-to-skin, with no gloves as a barrier between the care partner and the person taking part in the activity. However, safety is the main concern, and during the COVID-19 pandemic, all staff wore personal protective equipment (PPE): gloves, masks, and disposable gowns.

Group Program Schedule and Frequency

Alzheimer’s disease and other end-of-life diseases and conditions never take a day off, and neither should the Namaste Care Group Program. Residents need and deserve high-quality programming 7 days per week. I recognize, however, that care homes and other healthcare organizations have days when staff are unavailable to provide the group program. All care homes in the countries I have visited have days when many staff are sick, especially during the flu season or when we experienced the COVID-19 pandemic. Summer months are often the most popular times when staff request vacation days, and many care homes have a high turnover rate. When there is a dedicated Namaste Carer in addition to regular care staff, filling in for emergencies is not as difficult. However, adding a Namaste Carer to the budget is a cost many care homes cannot justify. The frequency and duration of Namaste Care sessions may be modified according to resources available at individual sites. I classify Namaste Care programs by three levels of frequency:

- Gold: Namaste Care is offered 7 days per week, 4 hours per day.

- Silver: Namaste Care is offered 5 days per week, 2 hours per day.

- Bronze: Namaste Care is offered 3 days per week, 2 hours per day.

Scheduling Namaste Care as many times as possible is the goal, and flexibility is the key to meeting the Gold standard. In organizations that adhere to standards of the culture change movement, lines between responsibilities of management and team members such as care partners, dietary aides, and housekeeping staff are less rigid. It is everyone’s responsibility to care for and about the people in the care home or organization. Educating all team members to work in the Namaste Care Group Program will help ensure that the program is offered 7 days per week. If team members are not qualified certified nursing assistants or nurses, they can still comb hair, moisturize hands, or read short stories or poetry. However, they may not be allowed to serve beverages. For example, I used to provide Namaste Care at a home in Florida. State regulations required that anyone offering beverages to residents had to have completed a certification course, and I had not, so I could not give beverages during the program. One certified person was always with me during my hour there to offer beverages.

Many care homes have told me that although the group program is only offered in one room on a regularly scheduled basis, they find that the loving-touch approach and calm environment seep into the culture of the entire home. Skogarbær Care Home in Iceland now has not only the original program I helped establish on one unit, but also some Namaste Care activities on two other units. Namaste Care should be offered as often as possible because people with advanced dementia usually cannot participate in and enjoy traditional activities provided in care homes.

OVERVIEW OF THE NAMASTE CARE INDIVIDUAL PROGRAM

The Namaste Care Individual Program is particularly effective for people receiving hospice care in different settings. Namaste Care can be brought to the person’s home, a room in a residential setting, a hospice house, or a hospital room. The same principles of a calm environment and a loving-touch approach to activities are applied. Namaste Care supplies are carried in a bag that can be cleaned for infection-control purposes and with a zipper so that items will not fall out. Many organizations put their logo on the bag as a way of marketing their services. Wherever Namaste Care is provided, the space is to be as peaceful and quiet as possible.

Supplies to enhance the environment include devices for playing music (e.g., smartphone with a music-streaming service) and scented sprays. Supplies for activities may include moisturizing lotion, a popular face moisturizer, or a favorite aftershave lotion. Lollipops and beverages or easy-to-swallow foods are offered to the person. If the person is in a care home, the hospice care partner can ask for beverages. People usually have their own combs, brushes, and favorite creams or makeup at their bedside.

In 2007, I was asked to develop Namaste Care for Seasons Hospice and Palliative Care (now AccentCare), a large hospice organization in the United States. Working with their staff, we developed a way to bring Namaste Care to the bedside. AccentCare has offered Namaste Care to people with advanced dementia in care homes, assisted living communities, hospitals, and inpatient units. In 2016, they decided that all people receiving hospice care should be offered Namaste Care regardless of the diagnosis. In 2019, they offered Namaste Care more than 30,000 times (R. Hilliard, personal communication).

I am a volunteer for AccentCare now that I am mostly retired. I’ve brought Namaste Care to people at the end of their life and sometimes to their exhausted caregivers, and I have seen the power of Namaste Care to provide peace and comfort during this time. Only once have I had a hand massage rejected. The person was a younger woman who pushed away my hand when I started to massage her fingers. Then, I stood behind her to fuss with her hair, and she very clearly said “no.” For the rest of the visit, I just sat next to her bed and let her caregiver talk. It seemed that he was the person I needed to be present for during this visit.

Inpatient Setting

If the person receiving Namaste Care is in a room with others, a privacy curtain or room divider can help create the appropriate environment. I was in a six-bed inpatient hospice ward in Singapore where there was one television hanging on the wall for all patients. It was tuned to a news station and was very loud. I politely asked if I could turn it off while I visited one man, and the other patients agreed. I approached the man who was to receive Namaste Care and introduced myself. I pulled the privacy curtain around the bed so it created a little cocoon. My cell phone played music that the patient seemed to like, as he smiled when I turned it on. All of my supplies were in a bag—lavender spray, lotion, and a jar of bubbles. I was able to offer Namaste Care at the bedside despite the presence of five other residents in the room.

Namaste Care at Home

When Namaste Care is offered in a person’s home, family caregivers can stay and watch or can leave and have some time for themselves. While consulting for Seasons Hospice, I accompanied a hospice aide to a person’s home. She was scheduled to provide Namaste Care to an 80-year-old man who was confined to bed due to advanced stage of congestive heart failure. When we entered the home, we met his exhausted 80-year-old wife, who was his primary caregiver. She was also caring for her 5-year-old granddaughter. She needed Namaste Care as much as her husband did—maybe more! With the wife’s permission, we put her granddaughter in a bedroom with a cartoon show she enjoyed on television. Then we gave our attention to the care partner. With the radio playing a classical music station, we seated her in a comfortable recliner and tucked a blanket around her. We gave her a hand massage, and she gave us a big smile and fell asleep. Then, we took care of her husband.

One organization that offers Namaste Care to people in the home is Hope for Home, a volunteer organization in England (http://www.hopeforhome.org.uk/help/advice/). Volunteers visit people in the hospital who have dementia and offer Namaste Care at the bedside, then visit them at home, where they teach family caregivers how to provide Namaste Care. In the 5 years after I was asked to provide education to their staff and volunteers, Hope For Home received more than 600 referrals and delivered 2,100 Namaste Care sessions in people’s homes, care homes, and hospital settings.

CRITERIA FOR PARTICIPATING IN NAMASTE CARE

It is important to determine some criteria to decide who might be appropriate for the Namaste Care Group Program or for the Individual Program. These guidelines help team members, families, other professionals, and regulators understand the physical and cognitive status of the population to be served.

As implementation of the Namaste Care Group Program spread and matured, team members realized that it was helpful to anyone who could benefit from this special sensory approach to care. In the United States, people are identified as appropriate for the program by the assigned admission nurse or case manager. Some people in Namaste Care will have a diagnosis of probable Alzheimer’s disease or another irreversible dementia, including the following:

- Late-stage Parkinson’s disease
- Emphysema
- Failure to thrive
- Debility
- Multiple sclerosis
- Amyotrophic lateral sclerosis
- Depression

These are some of the symptoms displayed by people appropriate for participating in Namaste Care:

- Inability to actively participate in most activity programs

- Difficulty communicating
- Need for assistance with most personal care
- Inability to ambulate
- Need for psychoactive medications
- Agitation
- Frequent crying

Because the type of person who would benefit from Namaste Care has changed so dramatically since the earlier editions of this book, I decided not to establish strict criteria for participation in the program. What I do want to see is that on a weekly or at least biweekly basis, team members are asked to update the list of participants. When a death occurs, another person can quickly take the person’s place in the Namaste Care room. The most important qualification is that team members believe Namaste Care will improve the person’s quality of life.

Alzheimer’s Disease

People with Alzheimer’s disease are the primary participants in Namaste Care programs. This disease is the most common of all dementias. In 2020, it was the seventh leading cause of death in the United States (National Center for Health Statistics). The disease is a progressive, irreversible brain disorder that gradually destroys a person’s memory and ability to learn, reason, make judgments, communicate, and carry out daily activities. People with Alzheimer’s disease may also experience changes in their personalities and may hallucinate or experience delusions.

At this time, there is no cure for Alzheimer’s disease, although a few drugs are available that may slow its progression. It is believed the disease is caused by a number of factors, including genetic predisposition. Some families have a history of early-onset Alzheimer’s disease, which can begin in mid-life or before age 60, and other people have genes known to increase the risk of developing Alzheimer’s disease. It is well known that age is the greatest risk factor for developing most forms of dementia. Environmental factors, such as stress, head injury, and low education, are also high on the list of risk factors for developing Alzheimer’s disease. Research indicates that people who engage in mentally and socially stimulating activities, exercise regularly, control their blood pressure, and maintain good cholesterol levels lower their chances of developing Alzheimer’s disease.

The first signs of Alzheimer’s disease are usually significant short-term memory loss, increased confusion, and difficulty with shopping and household tasks. A visit to a physician is necessary to rule out any reversible causes for these symptoms. As part of the diagnostic workup, physicians will take a medical history, give the person a thorough medical exam, run laboratory tests, and conduct various neurological and memory tests. A brain scan can increase the reliability of the diagnosis of Alzheimer’s disease, although many health plans do not pay for scans to determine the cause of memory loss. Ultimately, a diagnosis of Alzheimer’s disease is not certain until death, when an autopsy can confirm the presence of amyloid plaques and neurofibrillary tangles in the brain.

The diagnosis of Alzheimer’s disease may be complicated because of the presence of other related dementias, including vascular dementia, frontotemporal dementia, dementia with Lewy bodies, and Parkinson’s disease. Although early symptoms of these other dementias differ, by the advanced stage, symptoms become very similar and include difficulty with verbal communication, inability to ambulate independently, and dependence in all ADLs. When a person is diagnosed with probable or possible Alzheimer’s disease, one of the several medications that show promise in slowing the progression of the disease may be prescribed. The usual lifespan of a person with Alzheimer’s disease is 8 years, although some people live as long as 20 years.

More information about Alzheimer’s disease can be found on a number of web sites, including the Alzheimer’s Association in the United States (https://www.alz.org/) and Alzheimer’s Disease International (https://www.alz.co.uk/). Support groups, new medications, and new programs are constantly being added to the Internet.

Namaste Care for a Range of Diagnoses and Needs

In addition to individuals with advanced dementia, people with a variety of physical and cognitive problems can benefit from Namaste Care. Consider the story of Martha, a resident whose life was profoundly changed by Namaste Care.

MARTHA

Martha was a resident in a nursing home located in the United States. She had a diagnosis of mental illness and had been a resident for 6 years. Martha never married, and her closest relative was a nephew who visited infrequently. Martha often sat in front of the nurse’s station and screamed, “Help me!” Many nursing homes have residents like Martha who are confused and distressed, and the team members are challenged and frustrated by how to help them. No matter how they try to soothe and calm the person, nothing seems to work.

Martha cried out for help continually and complained of a headache. No amount of medication or handholding seemed to help her. She had every imaginable test over the years, but no clinical reason for her expression of pain could be found. Very few of the nursing staff or other team members were able to connect with her in a meaningful way. Sometimes, they could comfort her by placing a cool washcloth over her forehead; when care partners had the time, they sat by her side.

Martha did not like to be touched, so giving personal care was a challenge. In desperation, team members brought her to the Namaste Care room. She was lifted from her wheelchair and placed in a comfortable lounge chair. A comforter was tucked under her chin. Then, the miracle began. Martha stopped screaming. The headache complaints ceased. She looked around the room and seemed pleased by what she saw. She still did not like to be touched by most care partners, but she developed a very special relationship with a male care partner whom she allowed to care for her. When Martha hugged him, a beautiful expression appeared on her face; it was as if she finally had a son.

Martha enjoyed sucking on lollipops and watching nature videos from her favorite chair. She seemed to appreciate the quiet environment of the room, and although she did not actively engage in activities, she showed that she was aware of her surroundings. The “new Martha” was easier for team members to approach. On the day she died, a year later, a care partner came in on her day off to hold Martha’s hand. For Martha, the happiest days of the last year of her life were clearly spent in Namaste Care. (Simard, 2017)

Another small miracle occurred with Evelyn (Simard, 2012a):

EVELYN

Evelyn was haunted by hallucinations of her past work as a police dispatcher. She may have had dementia with Lewy bodies. Evelyn was reliving frantic calls from people in crisis. She constantly murmured into her clenched fist as if it were a microphone, “They are dying. Look at all the blood, oh, the children, the poor children.” Staff had found no way of calming her, and although a variety of medications had been prescribed, none were successful in wiping these horrible visions from her memory.

It took several days in the Namaste Care room and the compassionate care offered by Namaste Carer Chris Donovan, but eventually Evelyn was freed from her world of pain and suffering while attending the program. The hallucinations gradually drifted away, and she was actually a happy person who smiled and loved Chris. One day when I was visiting the program, she asked Chris to get her a teapot and stated that she would pay 12 cents for it. I stayed with the residents while Chris went to the dining room and got a teapot. For the next 30 minutes, Evelyn caressed the teapot and told stories of having friends over for tea, a miracle taking place right before our eyes (Simard, 2012a).

Like Martha and Evelyn, who didn’t fit the usual profile for Namaste Care, another resident named Carl was difficult to reach. Despite the many different approaches used with him, he seemed to be distressed and anxious most of the time.

CARL

Carl was admitted to a dementia unit of a U.S. nursing home several years before the Namaste Care program began. When first admitted, he was able to walk and occasionally joined activities. As the disease progressed, he gradually began to have problems with falling, and walking on his own was deemed to be unsafe for him. He was evaluated by a physical therapist and, after breaking several wheelchairs, he was given a special rocking wheelchair because he seemed to need to be constantly moving.

Carl found a place in the corridor where he moved up and down throughout the day. He was resistive to care, and from his expression, he seemed to be a very unhappy man. The activity team members were unable to find anything that he enjoyed. Out of desperation, the staff took Carl to the Namaste Care room, where he was placed in a lounge chair near the window. He seemed to be able to feel the sunlight, and he responded to this peaceful setting by falling asleep. When agitated, he was spoken to in a soft voice; he liked hearing about activities he had enjoyed in the past.

One day, when he became increasingly agitated, Mary Longtin, the Namaste Carer, knelt next to him and talked to him about his love of picking apples. His family had mentioned that this was one of his favorite activities each fall, and she used this as a way to honor his past. She gave Carl an item that provided the scent of apples and showed him pictures of apples. With a soft, soothing voice, she talked him through the ritual of apple picking; before long, Carl was asleep.

Nan was another surprise beneficiary of Namaste Care. Most care homes in the United States have more than 100 beds with a dedicated floor for their residents with Alzheimer’s disease. They often have residents who pace, and Nan was one of them. There is a difference between pacing and wandering. The resident who is wandering can usually be redirected and engaged by team members. Residents who pace believe they have places to go and things to do, and they are not easily redirected. Team members find it difficult or impossible to get these residents to rest.

NAN

Nan was a younger resident who had lived in the dementia neighborhood for several years. She had the most beautiful eyes and a smile that melted hearts, but she paced constantly, and because of this she was not considered appropriate for Namaste Care.

One day, Nan found her way to the Namaste Care room. Perhaps it was the low lighting, the scent of lavender, the soft soothing music, or the quiet atmosphere that called to her. Whenever she walked into the room, she headed for an empty chair, and for a few minutes, she looked around the room before closing her eyes and going to sleep for 10 to 15 minutes. When she woke up, the Namaste Carer would offer her something to drink and some ice cream. Because of her constant pacing, she was at high risk for weight loss, so any calories she consumed were beneficial. For brief periods during the day, Nan appeared to welcome the peace of the Namaste Care room and was at rest.

Over the years, all of the people who have benefited from Namaste Care have reminded me never to give up on the quest for quality of life for anyone in our care. The person who taught me this valuable lesson was the late Barbara Holmes, a certified nursing assistant for 25 years at a nursing home in Brewster, Massachusetts, and one of the best Namaste Carers I have ever worked with in my career. Barbara rarely gave up on a resident. She would try to soothe someone who was crying out even if the person could stay in the room for only 5 minutes. Perhaps by the following week, that person could stay for 10 minutes. Barbara always reminded me that even 10 minutes of peace and comfort were important to someone who was obviously in distress, as the story of Ethel shows.

ETHEL

Ethel was another resident who paced constantly, seemingly looking for something but unable to communicate what that something was. Her face was pinched with concentration, and she rarely smiled. She was at risk for falling and weight loss, but it was impossible to have someone always at her side.

Somehow, somewhere, Barbara found an enormous white stuffed dog and invited Ethel into the Namaste Care room, where she seated her in a comfortable lounge chair that reclined, making it a bit more difficult for her to get up. Then, Barbara introduced this huge dog to her. Right before my eyes, a transformation took place. Ethel’s sad expression disappeared, replaced by a smile almost as huge as the dog. Barbara sat the dog on Ethel’s lap and asked her to help care for it. The dog was so large that Ethel was overwhelmed with the sheer size of it, and rather than sending it flying across the room, as she did with a smaller stuffed version, she spent 30 minutes cuddling it and talking to it. Then, she fell peacefully asleep holding the dog in her lap.

The lesson in these situations is that if team members believe the life of any person could be improved by Namaste Care, then it is worth trying it and not giving up! Martha did not immediately stop crying out, nor did Evelyn stop having her disturbing hallucinations, but each day they could stay a bit longer until eventually they both spent most of each day peacefully (and occasionally, joyfully) in the Namaste Care room.

NAMASTE CARE ACROSS CULTURES

The Namaste Care programs reflect the different cultures of their diverse participants and the geography, history, and traditions of the many countries that offer them. Daily activities can be adapted for any country or any setting where Namaste Care is offered as a group program. As an example, while I was teaching Namaste Care in Singapore, some people attending my presentations had never seen snow, as Singapore does not have the dramatic seasonal changes that I experienced in the northern part of the United States where I lived for most of my life. Singapore is a small country with a beautiful, lush landscape filled with flowers and orchids all year long. Because the country has so many varieties of orchids, an activity in Namaste Care involves showing people orchids of different colors, designs, and sizes. Sometimes, participants are shown two different orchids and asked to choose their favorite one. That flower becomes the orchid of the week.

The Namaste Care approach has the potential to encompass many aspects of people’s lives, not just the daily program of activities offered in the group or individual program. It can improve a person’s sense of self and preserve quality of life in the face of disease. Matthew Wilk embodies the essence of Namaste Care. He was one of the first participants in the program. His story begins with how he was selected for Namaste Care (Simard, 2005).

MATTHEW’S STORY

Matthew was one of the first residents to participate in Namaste Care. He met the criteria for the program because he was no longer able to participate in activity programs, was not ambulatory, and needed total care. At first, he could still respond to yes/no questions and motion to pictures placed in front of him. Gradually, he lost all verbal communication and could communicate only with his eyes.

Matthew seemed to recognize his wife, Celia, who visited often. Like so many spouses, Celia had tried valiantly to care for Matthew at home, at first on her own and then with adult day services. They had a wonderful marriage, as anyone could see from the light in Celia’s eyes when she recalled their life together. Now, during the final months, it was increasingly difficult for Celia to visit. Matthew was slipping away, sleeping more than he was awake, and he struggled to respond to her words. Because he slept through the activity program on the dementia neighborhood, he was taken to the Namaste Care room for the special individualized sensory programs. Celia enjoyed giving her husband hand massages and spending time with the Namaste Carers and other spouses visiting their loved ones. Namaste Care provided both Matthew and Celia with a support group of caring people.

Matthew perfectly fit the criteria for Namaste Care. He received personalized care that honored him as a unique individual, and his personhood was not diminished despite the many losses he experienced because of his disease. His story, which I revisit throughout this book, shows how the philosophy and mission of Namaste Care can help those who are living with dementia maintain a life with moments of quality.

CHAPTER 2

End-of-Life Dementia Care and Hospice

The only way to do great work is to love what you do.
If you haven’t found it yet, keep looking. Don’t settle.
As with all matters of the heart, you’ll know when you find it.

STEVE JOBS

This chapter describes recent shifts in thinking and practice with regard to caring for people with dementia and caring for people who are at the end of life. For both hospice and dementia care, a person-centered approach is embraced.

HISTORY OF DEMENTIA CARE

When I was first trained as a social worker and began working with people who had memory loss, the accepted approach was to use reality orientation (RO) at all times. This approach taught us that it was important to constantly remind residents of their surroundings, the time, the place, the person, the truth. We believed that saying the same thing over and over would help residents with memory loss live in the present. When residents asked where they were or said that they wanted to go home, we responded with replies such as, “You are in a nursing home. Your children are grown, and you do not need to fix dinner for them. Your children are adults with their own homes.” Many residents looked for their mothers, and when we used RO and told them that their mother had died 20 years ago, they were devastated. This “new” information was shocking and upsetting to them. I am embarrassed to even write about one of my first encounters with a resident who must have had Alzheimer’s disease:

SALLY

While I was getting to know residents on the second floor, a woman in her 80s approached me and asked whether I had seen her mother. My tender and compassionate response was that her mother had passed away. The woman was shocked at this news and dissolved into tears. Within 5 minutes, she approached me again with the same question. My response was the same: Her mother had died. Once again, she cried over the “recent” loss of her mother. This was quite demoralizing. After all, my job was to help the residents feel good, not cause them to cry. When Sally approached me the third time with the same question, my gut reaction was to try a different response. Not quite knowing what this line of questioning would produce, I asked her to describe her mother. With a big smile, she told me what her mother looked like and what a wonderful mother she was. We proceeded to have a delightful conversation, and when our visit was over, I reassured her that I would look for her mother. Sally walked away very happy that someone would help her. Somehow my question, which had no basis in reality, reached this woman. At least for a moment, she was at peace.

A Shift in Dementia Care

After the experience with Sally, I decided that the best approach to working with residents on this floor was not to use RO. They needed a new tactic to help them live in their world, but what would that be? The answer came as a rather new and radical (at the time) change in how we cared for residents who had severe memory loss. In 1989, a social worker named Naomi Feil introduced a new approach to replace RO, and she called it the Validation method (Feil, 2022). After attending one of her workshops, I could hardly contain my excitement. Someone was finally giving compassionate advice on how to work with residents who had memory loss and an altered sense of reality. The answer seemed to be to “join their journey,” as my friend Kathy Laurenhue (www.wisernow.com) teaches, rather than trying to drag them into our world. The Validation method offered us a simple way to help residents with memory loss live happier lives. Blanch is just one example of a resident who benefited from the shift from RO to Validation.

BLANCH

Blanch, a widow in her 70s with two grown sons and grandchildren, believed that she was on vacation and that the nursing home was a hotel. Every morning, she thanked the staff for the wonderful stay at the hotel but said her husband was picking her up so she could go home to care for her two small children. The staff hugged Blanch and told her how much they had enjoyed having her stay with them. Then they suggested that she have breakfast while waiting for her husband to arrive; after all, breakfast was already paid for in the cost of her stay! Blanch happily walked to the dining room, joined her friends for breakfast, and promptly forgot about going home. The next day it would all start again.

Years ago, Blanch would have been in a state of anxiety each day as she was told the truth: that her husband was deceased, her sons were grown, and she was living in a nursing home. Using Validation as an approach, we supported Blanch in a way that helped her live a happier life, surrounded by friends in a great “hotel.”

Increased Awareness and Education

In the 1980s, interest in Alzheimer’s disease grew as healthcare professionals realized that the number of residents with memory loss was significant and growing in nursing facilities. They needed more information on how to treat and care for this special population. Articles on Alzheimer’s disease started to appear in journals. Now, of course, several journals are dedicated to Alzheimer’s disease.

Another important change in dementia care was the growth of organizations focusing on Alzheimer’s disease, such as the Alzheimer’s Association in the United States and Alzheimer’s Disease International, the umbrella organization for more than 100 countries. Founded in 1980, the Alzheimer’s Association emerged as the leading force in increasing the public’s awareness of Alzheimer’s disease. Beginning with a few family members and healthcare professionals, the association grew to become a respected organization with chapters throughout the United States.

The mission of the Alzheimer’s Association is to lead the way “to end Alzheimer’s and all other dementia—by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support” (Alzheimer’s Association, 2022). The association is dedicated to enhancing the quality of life of all people affected by Alzheimer’s disease and related disorders through advocacy, education, and support systems while also promoting research efforts.

As the number of people with Alzheimer’s disease grew, so did the scope of services and programs offered by the Alzheimer’s Association. The association began to establish support groups for families, people with early Alzheimer’s disease, and children with parents (early onset) or grandparents who had an irreversible dementia. The Alzheimer’s Association and most chapters offer conferences, other educational opportunities, and support groups to help professionals working with people who have Alzheimer’s disease and families caring for someone with this disease. Their web site (https://alz.org/) is well organized and provides information to people with Alzheimer’s disease, family carers, and professionals.

Over the years, researchers have studied a variety of care issues related to people with Alzheimer’s disease and their families, and Alzheimer’s disease has become a focus of conversation for healthcare professionals. Drug companies began to sink millions of dollars into finding medications to help slow the progression and hopefully cure Alzheimer’s disease. Now, you need only search the Internet to quickly find a wealth of information about Alzheimer’s disease. When I began my career, I rarely saw articles or books on Alzheimer’s disease. Now, there are many publications related to some aspect of irreversible dementias, and my computer is full of resources, newsletters, web sites, and discussion topics related to dementia. Dementia care has changed from a “road less traveled” to one that now is so crowded with information that it is easy to become overwhelmed with the sheer volume of it.

Philosophical Changes and New Approaches in Dementia Care

With her Validation approach, Naomi Feil opened the door to a new way of caring for people with memory loss. Others have followed with a variety of approaches that continue to improve quality of life for people with dementia. Virginia Bell and David Troxel (2017) wrote about becoming a “Best Friend” to someone with Alzheimer’s disease. Tom Kitwood’s person-centered therapy (1998) recognizes the importance of the individual first, the disease second. Cameron Camp and Jennifer Brush developed Montessori-based activities as a rehabilitation approach to the treatment of dementia (Camp, 1999; Brush, 2020).

Dr. Bill Thomas publicly declared what we all knew—that nursing facilities were filled with residents who felt lonely, helpless, and bored. This declaration has helped in humanizing nursing facilities. Thomas’s model, called The Eden Alternative, developed into an international organization dedicated to transforming care environments into habitats for human beings that promote quality of life for residents and staff (www.edenalt.org). The Eden Alternative (Thomas, 1996, 2004) is now being taught to care partners outside the long-term care setting in a program called Eden at Home. Dr. Thomas has also created the Green House Project (GHP), a radical approach to long-term care in which nursing homes are built new or torn down and replaced with small, home-like environments where people can live full, interactive, and meaningful lives (https://changingaging.org/the-green-house-project/).

In the decades since the first Green House homes opened, the GHP has been recognized as the leader in creating high-quality, cost-effective, and sustainable human-scale alternatives to the traditional nursing home. This is a movement that de-institutionalizes, de-stigmatizes, and humanizes care for all elders in need of long-term care (https://www.thegreenhouseproject.org/). GHP has created a disruptive and high-impact innovation in the care of older adults by implementing optimal systems and structural changes throughout the entire organization, thereby ensuring a unified approach to elder-directed care.

The momentum of the GHP continues to increase, with Green House homes and similar “small home” models throughout the United States, as well as international interest in the project. The GHP model proved particularly successful during the COVID-19 pandemic. GHP partnered with the University of North Carolina to collect data about the impact of the virus in Green House homes. Data amassed from the start of the pandemic through August 31, 2020, showed that 94% or more of the skilled-nursing Green House homes were free of the COVID-19 virus during that time (Zimmerman et al., 2021).

In addition to Dr. Thomas’s efforts to transform the long-term care environment, several others have offered their ideas and approaches in this area. Betsy Brawley (2008), an interior designer whose mother had Alzheimer’s disease, wrote about creating dementia environments that support life. Margaret P. Calkins (2009), an internationally recognized leader in the field of environments for older adults, especially those with Alzheimer’s disease and other dementias, founded I.D.E.A.S., Inc. (Innovative Designs in Environments for an Aging Society) and IDEAS Institute, a nonprofit research entity to promote research, education, and consultation on the therapeutic potential of the environment—organizational and social as well as physical—particularly as it relates to older adults, individuals living with dementia, and their care partners.

All of these innovators have increased our knowledge about how to help people with dementia live with their disease. For several years, the most popular title of the many presentations I have given is “Living, Not Just Existing, with Alzheimer’s Disease.” People who are experiencing memory loss from an irreversible dementia need more than just to be bathed, dressed, fed, and put in front of a television set. Meaningful activities must be offered for staying busy, contributing to the world around them, and having fun—helping them to live, not just exist.

Dementia Care in Nursing Homes

One large nursing home company where I worked as national director of Alzheimer’s services held a “Nursing Home of the Future” meeting. When asked my thoughts on what the building should look like, I described a building with a small wing for the few oriented residents who could easily go outside or go out to lunch with families and friends. The rest of the building would be secured and designed for residents with various degrees of memory loss. The idea surprised everyone and was considered radical back then. It seems that I was ahead of my time with my prediction. Staff members in nursing homes today say that at least 80% of residents who are not on the rehabilitation unit have some significant memory loss. Small areas of some nursing homes now have rooms designated for the few residents who have physical disabilities but do not have dementia, with the rest of the building dedicated to the care of people with memory loss.

Nursing homes that provided care for the growing population of residents with dementia began to change as new approaches to dementia care began to emerge. Special care units (SCUs) were created; these were secured areas within a care home that provided activities tailored for residents with dementia and specialized educational programs for staff. It was an exciting time as the long-term care industry explored ways to help residents with dementia maintain quality in their lives. As nursing homes grew more aware of the unique needs of residents with dementia, educational programs were offered to help staff understand how to care for them. Many training films and educational materials became available for healthcare professionals and family care partners. We now have many organizations, books, and journals that specialize in activities for people with dementia. Today, basic Alzheimer’s education is part of the orientation program in most care homes in most countries. In the United States, many states now mandate training in Alzheimer’s disease for all staff.

I was fortunate to be part of these historical changes in dementia care when, in 1990, I joined the Hillhaven Corporation, a leader in the care of residents with Alzheimer’s disease. Under the leadership of Nancy Orr-Rainey, a department was created to develop SCUs (Orr-Rainey, 1994). These units were secured so residents would be in a safe, controlled environment. SCUs were designed with country kitchens where residents could feel at home, help to prepare a meal, or just sit at the kitchen table to talk with their friends. Office spaces were established for residents who had “work” to do. Secure outside courtyards were designed so residents could enjoy being outdoors, planting gardens, or watching birds as they flocked around the bird feeders. Living rooms were arranged so that games could be played and families could visit in comfortable surroundings.

Nursing homes recognized that SCUs with high-quality programming had a healthy census, some with waiting lists. When the emergence of assisted living residences began to erode their private-pay census, many nursing-home companies found that SCUs had the greatest potential to attract new private-pay residents, helping to keep them solvent. As more and more SCUs were developed, the need for a special activity program emerged. Most healthcare professionals agree that residents with moderate to advanced dementia rarely self-initiate meaningful activities and need continuous activity programming (Volicer, Simard, Pupa, Medrek, & Riordan, 2006). When a resident with dementia has nothing to do, the person tends to engage in what are often called “problem behaviors,” such as wandering into other residents’ rooms, going through others’ belongings and taking items (I call that shopping), or otherwise annoying other residents and their families.

JOE

One of my earliest experiences with a “shopper” was Joe. We knew he liked to wander into other residents’ rooms, but what we did not know was that if he didn’t have his dentures in his mouth, Joe would believe they were lost and was on a quest to find them. When he died, we were cleaning his bureau and discovered 15 pairs of dentures safely tucked away in the back of a drawer. This solved the mystery of the rash of complaints we had been receiving about lost dentures.

The National Association of Activity Professionals (NAAP) emerged as a resource to help educate activity staff and increased awareness that activities were not just fun, but also therapeutically beneficial, especially for residents with Alzheimer’s disease. I have found that residents enjoy activities that remind them of earlier times in their lives. Finding ways to keep residents involved in the life of the unit became my specialty. I discovered that some people like folding laundry or washing dishes. Residents who love children are very comfortable rocking babies (I used realistic dolls) and enjoy folding baby clothes and cloth diapers. People who worked outside the home can be kept busy with office work. Other meaningful activities include cooking groups, sing-alongs, religious services, and a variety of exercise programs.

Dementia Care in Assisted Living Communities

Another change in dementia care took place in the 1990s, when the assisted living industry also began to realize that dementia care was a lucrative business. I was privileged to work with the Marriott Corporation, a company that understood the special needs of their residents with memory loss. I became their Alzheimer’s specialist for their new assisted living business, Marriott Senior Living Services. I was immersed in every aspect of assisted-living dementia care, including working with designers, choosing appropriate colors and fabrics for people with dementia, developing education programs for staff, and creating activities for residents with mild or moderate Alzheimer’s disease.

Our units were designed to be less institutional and more home-like so that residents recognized different rooms and anticipated what activities would take place there. They could identify the living room with its couches and television set and feel comfortable just sitting in the room alone. Residents were happy to help set the table or cook with staff in the country kitchen, and they clearly knew that the dining room was the place in which to eat dinner. We noticed that when the environment looked like a large home or a hotel, residents were less anxious and seemed more comfortable. Marriott designed the dining rooms to look like restaurants. As a result, residents were usually very polite and respectful, as they thought they were dining out. Some residents insisted on receiving a check to pay for their meal. We gave them a “check” and were often amused that a tip was added for the great service we provided!

Despite these developments, I never thought communities would emerge that were totally dedicated to caring for residents with memory loss. Arden Courts−ProMedica memory care communities are designed to do just that. They now offer Namaste Care™ to their residents with advanced dementia. You will be reading about my time with Arden Courts in other chapters of this book.

Culture Change

The Pioneer Network gave birth to the culture change movement that is sweeping the United States. This movement began in 1997, when a group of pioneering resident advocates and healthcare professionals joined forces to transform nursing homes into places offering person-directed care that would restore control to elders and their caregivers (www.pioneernetwork.net). Culture change refers to transformational changes in a care home’s values, practices, and day-to-day culture of care. This movement has translated into changes in many of the nursing homes where I worked, with positive results for both residents and staff. Culture change seeks to create a care environment that honors all individuals and supports their self-determination. Changes involve not only transforming the physical space where people live, but also the attitudes of everyone in the long-term care organization.

EPOCH Senior Healthcare of Harwich, Massachusetts, is an example of one organization that embodied the spirit of culture change in their efforts to transform care. All staff members were encouraged to engage with residents and with one another to create a comfortable, close-knit environment within the care home. To encourage department managers to leave their offices and get away from their computers, the organization decided that everyone had to lead at least one resident activity each month. The director of nursing played the piano and led a sing-along. The administrator met with residents to discuss her favorite subject, cooking. Residents chose a recipe from the administrator’s cookbooks and then prepared the dish. The maintenance director led a men’s group called “Guess What This Is?” in which he showed a tool and had the men guess how it is used. The staff and residents came to know each other better by getting together outside their usual roles and in a more casual setting.

In another EPOCH nursing home, which was located in Brewster, Massachusetts, staff members transformed one of the traditional 30-year-old units into a neighborhood by removing most of one nursing station and wallpapering the wall to look like a park. The remainder of the nursing station was hidden behind latticework so that the nurses could still see the corridor. The bathroom was made to look more homelike, with colorful shower curtains and pictures of old-fashioned bathtubs. The day room was transformed into a country kitchen with brightly colored walls, a refrigerator, and a sink. Old wallpaper was torn down in the corridors, which were repainted a soft blue, and interesting and interactive art was hung on the walls. The “institutional” name plates on each person’s door were replaced with a mailbox with the resident’s name and the room number, along with a sign welcoming visitors. This was a creative way to meet signage regulations and make this “mature” nursing facility look more like a place where people would want to live.

Culture change has also made a difference in long-term care by shaping how the U.S. government views the care of residents. The Nursing Home Quality Initiative of the Centers for Medicare & Medicaid Services (CMS) now promotes the transformation of nursing facilities from institutional to person-centered care models (CMS, 2021). Surveyors are no longer satisfied with seeing residents gathered in a room where activities are taking place. Now, they want to know whether residents had a choice in attending the program and whether they are engaged in the activities. A simple head count is not enough, especially if many people are sleeping. Surveyors also want to determine whether care partners really know the residents they are responsible for as unique individuals.

PEOPLE WITH ALZHEIMER’S DISEASE FIND THEIR VOICES

The voices and perspectives of people with dementia have led to increased advocacy and awareness, helping to profoundly shape dementia care.

Voices in the United States

Public awareness of Alzheimer’s disease increased dramatically in 1979, when Rita Hayworth made headlines announcing that she had Alzheimer’s disease. In 1994, President Ronald Reagan wrote his poignant letter telling the American people that he had Alzheimer’s disease. Since his announcement, it has become easier for people with Alzheimer’s disease and their families to talk about the experience of living with the disease. Families are writing books on various aspects of caring for someone with memory loss. Newly diagnosed people are coming forward to speak about the disease; many are outspoken advocates for more research funds and better care. Richard Taylor, a former psychologist who was diagnosed with early-onset Alzheimer’s disease, was a crusader for the newly diagnosed person with Alzheimer’s disease (2007). He established a large electronic network and emailed the following message on January 24, 2007:

Stand up! So as not to become a victim of your own silence. Speak for yourself and those who will follow. Ask Carers and Friends to do the same. Today will never be here again. Time is of the Essence! Use it wisely!!! Tell as many people as possible your perceptions of your interactions with professionals, with carers, with friends, with strangers, with your government. They won’t change unless they know, and they can’t know unless and until you SPEAK UP! Seek to create a Palpable Sense of Change and of urgency! Join a Crusade, Now! Be a Crusader, Now! Lead a Crusade, Now!

Richard Taylor was one of many people with an irreversible dementia who spoke out at professional conferences and in the halls of Congress. These people are demanding that money be spent not only to find a cure for Alzheimer’s disease, but also to learn how to preserve quality of life for people with dementia and to give them a say in policy decisions.

In 2014, country singer Glen Campbell co-wrote “I’m Not Gonna Miss You” as the soundtrack of his documentary Glen Campbell: I’ll Be Me, which focuses on the singer’s diagnosis of Alzheimer’s disease and his final tour. His wife, Kim Campbell, formed CareLiving.org, an organization that continues her husband’s quest to educate the world about Alzheimer’s disease and inspire, encourage, and empower caregivers to care for themselves while caring for others. Their web site features articles from Kim and a host of guest writers, specialists, musicians, doctors, and caregivers (http://www.careliving.org/about-careliving/).

Voices Around the World

In addition to the work of advocates in the United States, the voices of people with Alzheimer’s disease from other countries around the world have contributed to improving the lives of people with dementia and to increasing awareness. Alzheimer’s Disease International (ADI) is the global voice on dementia. This organization provides information on how Alzheimer’s disease impacts many countries. ADI also sponsors and reports on research and policy issues and provides information on dementia-friendly communities—societies that strive to honor the lived experiences of people with dementia and their right to self-determination. A dementia-friendly community considers the needs of people with dementia by focusing on multiple services and areas of life, including social support, healthcare, the living environment, and more (https://www.alzint.org/what-we-do/policy/dementia-friendly-communities/).

The Scottish Dementia Working Group is another organization that promotes the voices and experiences of people with dementia. The group is run by people with dementia and is recognized as “the independent voice of people with dementia within Alzheimer Scotland.” The Working Group seeks to “improve services for people with dementia and to improve attitudes towards people with dementia” (https://www.alzscot.org/our-work/campaigning-for-change/have-your-say/scottish-dementia-working-group). Its members have a voice in legislation regarding Alzheimer’s disease; meet with ministers and other politicians; speak at conferences; and participate in the training of doctors, nurses, and social workers. This is just one of many advocacy organizations run by people with an irreversible dementia who are helping to raise issues that are important to people living with the disease.

Dementia-Friendly Initiatives in Action: Spotlight on Efforts to Support and Honor People with Alzheimer’s Disease

When one of my sons, Stephen Sarvi, began serving as the City Manager of Winona, Minnesota, I challenged him, as I often have, to educate the public about Alzheimer’s disease. I had recently learned of the work of Dementia Friendly America, an organization with an initiative to create dementia-friendly communities throughout the United States (https://www.dfamerica.org/dfa-communities), and suggested that he introduce this idea to the business and community leaders. The concept took off, and Winona began working toward becoming an official Dementia Friendly Community. This city is a good example of efforts to support and honor people with dementia.

Winona has a Memory Café, where people with Alzheimer’s disease can meet and support each other. The city also hosts a Friendship Center, the only nationally accredited center in Minnesota that helps to educate the public about Alzheimer’s disease. The Friendship Center sponsors a choir of people with memory loss and their caregivers called “The Forget Me Notes.” Many businesses and civic organizations in Winona educate all staff about Alzheimer’s disease. With the help of eight trained Dementia Friends Champions, the City of Winona has informed many community members about Alzheimer’s disease and how to support persons living with memory loss.

This increased awareness has improved how the community cares for people with dementia. For example, the police department responded to a situation in which a woman with dementia walked out of her home and her husband could not find her. The police knew that this woman had been born and raised in a house not too far from where she lived. They also knew that people with Alzheimer’s disease often believe that they are living in the past. She was found safely at the home she remembered, looking for her parents.

In the United States, Winona is just one city out of many dementia-friendly communities. For more information, visit the Dementia Friendly America web site (https://www.dfamerica.org/dfa-communities) and the Minnesota ACT on Alzheimer’s web site (https://www.actonalz.org/).

CURRENT CHALLENGES AND TRENDS IN DEMENTIA CARE

Alzheimer’s disease is a worldwide problem. According to the Alzheimer’s Association (2022), approximately 6.2 million Americans aged 65 and older were living with Alzheimer’s disease in 2021. Alzheimer’s Disease International’s World Alzheimer Report 2021 states that “over 55 million people live with dementia worldwide” (Gauthier, Rosa-Neto, Morais, & Webster, 2021, p. 19) and forecasts that this number could reach 78 million by 2030. These sobering numbers require urgent efforts to ensure that the care and treatment needs of this growing population are met.

The Cost of Alzheimer’s Disease

Billions of dollars are spent each year on research to find the cause and risk factors for Alzheimer’s disease. Teaching people how to address modifiable risk factors through lifestyle changes can help reduce the likelihood of developing Alzheimer’s disease. However, a cure continues to be elusive. Medications are now available to slow the progression of the disease, but they do not stop it.

If we do not find a way to prevent or cure Alzheimer’s disease, it may bankrupt our healthcare system; in fact, we may have already done so. The toll on families is astronomical from both a financial and an emotional standpoint. According to the Alzheimer’s Association (2022), “The costs of health care and long-term care for individuals with Alzheimer’s or other dementias are substantial, and dementia is one of the costliest conditions to society. Total payments in 2022 (in 2022 dollars) for all individuals with Alzheimer’s or other dementias are estimated at $321 billion” (p. 61).

The financial cost to families in the United States is extraordinary. In many instances, families must rely on the U.S. government to pay the cost of care only after savings carefully put away for retirement are depleted. In most other developed countries, the cost of healthcare is paid by the government. The toll on the family continues even after the death of their loved one; many family caregivers experience depression. In the first edition of this book, I wrote, “How lovely it would be if my grandchildren could live without the fear of developing Alzheimer’s disease.” Now, because we are no closer to finding a cure or a drug that would stop the progression, I’ve revised this statement as, “If only my great-grandchildren would not have to worry about developing Alzheimer’s disease.” My dream is that one day hardly anyone will remember Alzheimer’s disease. Those of us who care for people with Alzheimer’s disease would be gloriously out of work!

Current Needs in Dementia Care

With no cure in sight and the average life expectancy increasing (age is the greatest risk factor for Alzheimer’s disease), greater awareness of the need for specialized Alzheimer’s services has emerged. Caring for people with Alzheimer’s disease is a thriving business. Adult day services have become an option for families who choose to provide care at home and need respite during the day. Home health companies are providing specialized services to families of clients with dementia as they meet the challenges of keeping their loved ones at home. Hospice organizations are also involved in caring for people with an irreversible dementia as either the primary or secondary diagnosis. Hospice can be provided in nursing homes, assisted living communities, people’s homes, or hospitals.

A major goal is to provide person-centered, thoughtful, affirming, high-quality care and meaningful activities in any home or organization, regardless of a person’s physical or cognitive status. This type of care allows people to live, not just exist, while surrounded by well-educated and caring staff.

HISTORY OF HOSPICE CARE

The origins of hospice can be traced back to early Western civilization when the term was used to describe a place of shelter and rest for weary travelers. Notations have been found among the writings of monks caring for warrior knights during the Crusades. They speak of caring for the aged and wounded knights, keeping their bed linens clean, serving warm soup, and washing their feet. Not much has changed; this comforting care is at the core of current hospice services.

The modern hospice movement began approximately in 1967 at St. Joseph’s Hospice in London’s East End. It was in this hospice that Dame Cicely Saunders began to experiment with pain medications and symptom relief for patients with terminal illness. In 1967, she opened St. Christopher’s Hospice in England, a place of comfort for people who were terminally ill. This hospice became the model for hospice programs all over the world and mainly served individuals with cancer.

A group of healthcare professionals from Yale University who visited St. Christopher’s Hospice were inspired by what they heard and saw there, and they resolved to begin a hospice program in the United States. In 1974, a hospice home-care program was developed in New Haven, Connecticut. An inpatient center, Connecticut Hospice, Inc., followed in 1980. This was the beginning of the hospice movement in the United States. The number of hospice organizations in the United States has grown to 4,639 hospice organizations (National Hospice and Palliative Care Organization, 2020) that serve millions of people with terminal illnesses and offer support and counseling to their families. Some have retained their status as voluntary organizations. However, most are Medicare certified.

One of the nurses who knew Dame Cicely, as she was affectionately called, had a conversation with her just before she died in 2005. The nurse asked Dame Cicely whether, looking back on her life, she would do anything differently. Her reply was that she would pay more attention to her patients with dementia. I think she would be pleased to know that in 2012, after inviting me to speak, St. Christopher’s Hospice sponsored a research grant that allowed me to work alongside their staff to implement Namaste Care in a number of care homes in the United Kingdom (Stacpoole et al., 2015, 2017). St. Christopher’s Hospice regularly offers Namaste Care education courses and brings Namaste Care to the bedside in the inpatient unit, in the person’s own home, and in care homes.

CURRENT CHALLENGES AND TRENDS IN HOSPICE CARE

Each country has regulations to determine when a person can access hospice care. In countries outside the United States, hospices are supported by government funds and donations from the public. In the United States, care is offered through the Medicare program, which is paid by federal taxes. For people with advanced dementia, criteria for receiving the Medicare hospice benefit are established by CMS and change periodically (visit the CMS web site or search the Internet for updates). Under the Medicare hospice benefit, an individual is eligible for hospice when the primary physician and the hospice physician decide that the person has 6 months or less to live.

Unfortunately, some people do not understand that hospice is a free service in the United States for anyone over the age of 65 who is enrolled in Medicare. It is also unfortunate that people wait until the person is dying before they call hospice. Many families of people with Alzheimer’s disease struggle to realize and accept that the person they love is nearing the end of life and is eligible to receive hospice care. Even in care homes, team members are reluctant to use hospice services, believing they themselves are already doing what hospice offers. However, this view fails to account for the services that families receive, as hospice not only cares for the person who is dying, but also provides support and counseling for families. In the United States, hospice offers families bereavement services for up to a year after the death as they adjust to life without the person they have cared for or visited in a care home for many years.

Many people believe that hospice is appropriate only at the very end of a disease and that hospice is just about dying. Hospice is really about living comfortably until you leave this world. When people are in hospice for several months, the team gets to know them and their families, so the care is very personalized. It has been a wonderful experience for me to hear and see how Namaste Care has been a part of hospice in many countries, helping to provide comforting and personalized care during a person’s final days. You will read about some of these programs throughout the book. Matthew Wilk, the resident introduced in Chapter 1, taught me much about the healing benefits of Namaste Care at the end of life.

MATTHEW’S STORY

Matthew was part of Namaste Care for several months before he died. I had seen the pleasure on his face when he was placed in a comfortable lounge chair and offered orange slices and lollipops. He was in the presence of other residents who were also experiencing advanced dementia-related illnesses, not isolated in his room or asleep in The Club. He spent most of the day with caring Namaste team members, in a room filled with beautiful music and the scent of lavender drifting through the air. Namaste Care team members offered Matthew a variety of meaningful activities, such as receiving hand and foot massages, listening to the sounds of nature, and hearing gentle conversations. Matthew spent the last months of his life in this comforting place with his wife, Celia, often by his side.

Matthew Wilk died on July 12, 2004. He was a husband to Celia for 56 years, a father of five, a retired transformer specialist for General Electric for 35 years, and a person who had lived with dementia for 6 years. Matthew’s last weeks, days, and hours could have been sad or distressing. Because of his participation in the Namaste Care program, they were not. Matthew left this world with dignity, love, and compassionate care and on the wings of laughter (Simard, 2005).

Several months after Matthew’s death, Celia and I were sitting in the private room reserved for residents in the Namaste Care program. This was the room where Matthew spent his last days, where he died. She looked around the room and gave a wistful smile at what had transpired there, the place where her wonderful husband had died, recognizing what a beautiful passing it was. We realized that the passing of Matthew had made a difference in both our lives. For Celia, it was the end of a journey for her husband, who had struggled with dementia for so many years. For me, it was being present during his death and seeing how the program had taken on a life of its own and blossomed in ways I had never anticipated. Namaste Care could really make a difference in the way people with advanced dementia lived their last days and in how they died.

PART II

Namaste Care in Practice

Namaste Care is a holistic approach that is practiced in the day-to-day interactions with those in our care, in organized group or individual sessions, and organization-wide. This section of the book describes in detail the Namaste Care Day (Chapter 3) and the Group and Individual programs (Chapters 4 and 5, respectively). Chapter 6 describes the physical setting that supports the practice of Namaste Care, including advice for creating one in an existing facility. Chapter 7 details the planning and implementation of a Namaste Care program, as well how to grow and maintain it.

CHAPTER 3

Beginning the Namaste Care Day

Be kind whenever possible. It is always possible.

THE DALAI LAMA

For people in care homes, Namaste Care™ begins with a gentle awakening to the day. When words fail, Namaste Carers find other creative ways to communicate. Sally Callahan (2005) wrote lovingly of communicating with her mother, even when dementia had taken all language away. She said, “Somehow, together, we learned the language of eye hugs and heartspeak; through eye hugs and heartspeak we found a spiritual connection.” She further commented that this spiritual connection calmed not only her mother, but also her. With heartspeak and eye hugs, care partners can help everyone greet the day.

In this chapter I will show you what the Namaste Care Day looks like, supplies you will need, and how to organize the program from the moment the doors open and residents are greeted.

MORNING CARE

A typical day in a care home starts with the morning shift of care partners assisting people with morning care. For people with advanced dementia, that may mean providing total care—helping with all aspects of ADLs, then transferring the person to a wheelchair or lounge chair. People are then taken to the dining room, where they also may need to be fed.

On a good day in the United States, when all scheduled care partners show up for work, the care partner is assigned 8 to 10 people to care for that day. When staffing is less than optimal, each care partner might have 12 or more residents. “Frantic” and “rushed” are how care partners often describe their mornings. They speak of feeling frustrated that no matter how fast they work, they never really have the time to get all their tasks done. Unsurprisingly, the turnover of care partners is exceedingly high in long-term care, both in the United States and in other countries.

A person with advanced dementia likely feels very confused when care partners are in a hurry to get their morning tasks done. Most of the time, residents with advanced dementia have not quite adjusted their sleepy body rhythms to waking up. People often don’t know where they are or what they are supposed to do now that they are awake. The constant commotion from highly energized care partners moving around the room could be frightening. The person may also experience discomfort from hunger or incontinence and will require very personal care from someone perceived as a stranger. Care partners are responsible for helping each person greet the day feeling safe and in the hands of a friend. Namaste Care is designed to do just that, as well as to support all team members providing care.

Based on conversations with administrators and directors of nursing in U.S. care homes, I know that Namaste Care has had a positive impact on care-partner turnover. They believe that turnover has decreased because Namaste Care is a team effort. The process is more important than the task, and everyone on the team knows this and supports each other. I have seen a nurse make a bed when she realized that the care partner assigned to that room was the Namaste Carer that day. You can imagine how that care partner must have felt supported by nursing rather than fearful of being chastised for not making the bed.

Greeting the Day

In some care homes, the morning begins with music, each day arriving with the sounds of song or chirping birds filling the air. The music is usually a classical piece, love songs from the 1940s, or nature sounds. Morning is a time of awakening, the beginning of a new day, and the music should reflect that feeling. Music influences everyone in the care setting. Team members seem to slow down and approach their work with a lighter heart as beautiful music drifts through the corridors. In smaller care homes, care partners often play music on their phones.

Care partners always knock on the person’s door and identify themselves before entering the room, with a greeting: “Good morning, Mr. Black. I’m Carol, and I will help you get ready for breakfast.” This is a simple but courteous way for care partners to enter a person’s room. “Wake up” music may be played for a pleasant way to begin the day.

When the person appears to have heard the greeting and is beginning to wake up, a light touch provides a cue that someone is there. Carly Hellen (1997, 1998) speaks of caring touch: “Touch is the primary way we communicate with people who have lost their ability to understand verbal messages. We touch ‘hello’ to let people know we are there, we gently move parts of their bodies to dress them, and together with the sound of our voices, our facial expressions, and eye contact, we make waking up and getting ready for the day a less frightening experience.” A man in the early stages of Alzheimer’s disease described his memory loss as always feeling like he had just woken up in the middle of a movie and had no idea what had just occurred. With soft reassurances and a loving-touch approach from care partners, people in Namaste Care are not as frightened and feel supported and comfortable in their world.

In some countries, people are in wards with six to eight others in the room with them. This type of living arrangement makes waking up more of a challenge. Playing music loud enough for everyone to hear and greeting everyone in the room are good ways to help begin the day in this situation. Then, each person is cared for behind a privacy screen, or curtains can be pulled around the bed.

In addition to conversation and gentle touch, another way for care partners to establish comfort and trust during morning care is by wearing a name tag with their name clearly visible to the person with dementia. I wear a large name tag (3×2 in.) with “Joyce” in large black letters, because an older person with decreased eyesight often has difficulty reading an official company name tag, which may include the name of the care home or organization, the team member’s full name and title, and often a company logo. I wear my name tag on my chest where it can be easily seen, as opposed to putting it on a lanyard where it moves as the person moves and often hangs just above the waist instead of in clear view. My name tag decreases people’s anxiety, and many who have never met me will call out “Hi, Joyce” as I pass by. In the United States, team members often wear both a personal name tag and an official organization tag, depending on regulations. Residents definitely look for name tags, though; I once consulted with a nursing home in Vermont (United States) called Helen Porter. All team members had to wear the official name tag with Helen Porter in large letters. Many of their residents called all team members, male or female, “Helen”!

Care partners should know everyone’s preferences so that the day begins in a way that suits the person. Some people like the drapes opened early in the morning, whereas others prefer dim light. The television set is turned off because care partners tend to talk less to the person when the television is on. A person with advanced dementia is not usually aware enough to understand television programming, and news programs are often filled with the bad news of the day. For too long, having the television on has been an excuse for not offering other programming. The television is definitely not a meaningful activity for people with advanced dementia. However, talking to them, even if the conversation is one-sided, is a meaningful activity.

Providing Care

When providing morning care, a care partner should explain what will happen next and how the person can help. For instance, a care partner might say, “Mr. Black, I’m going to help you get out of these wet clothes. I think you’ll feel so much better. Can you help me by turning over?” Throughout morning care rituals, such as brushing teeth, washing faces, and combing hair, the care partners should urge people to participate, even if just by opening their mouths or holding the face cloth, and then thank them for their help.

Many people with dementia experience depression, and I believe that a contributing factor may be low self-esteem. Thanking people with dementia for whatever they can do to help with care reminds them that they can still do things for others. The intentional shift in terminology from caregiver to care partner reflects the need for the person on the receiving end of care to remain as independent as possible. People should be given the opportunity to participate in their care even if they have severe cognitive and physical impairments.

Throughout the care process, the care partner speaks in a low tone and gives explicit step-by-step directions: “John, I’m going to help you get dressed for breakfast. If you just give me a hug, I’ll help you sit up.” The care partner provides clear instructions for each part of the activity: “Now, we will take off your gown; just lean forward like this” (models leaning forward). This is just one example of a positive way to involve the person in morning care.

Most people with advanced Alzheimer’s disease have lost the ability to communicate verbally, so care partners should watch for their nonverbal signs. The person may communicate with facial expressions, body language, and sounds. If a person is unable to make recognizable choices, the Namaste Carer continues to talk to and affirm the individual during care—for example, by stating how handsome the resident looks dressed in a clean shirt, or how the person has beautiful hair that shines when it is combed. A person who resists dressing and becomes agitated may not understand what the care partner is doing. Often, resisting morning care can indicate physical or mental distress. In this case, care partners should respect the person by providing as little care as possible, simply ensuring that the resident is clean and dry. Choice and control are always a part of Namaste Care.

Talking to the person throughout each step of care is time consuming for care partners, but it is a necessary part of Namaste Care and a powerful way to help alleviate a person’s distress. An important part of connecting with residents is knowing about each person’s history. In some settings, a form that captures this information is called a Social History; in others, it is called a Life Story. By learning about the resident’s life, care partners can better connect with the person during difficult care tasks. Consider the story of Molly, a resident who did not want to leave her bed or accept care. Using knowledge about Molly’s life, a creative and flexible care partner was able to make morning care much easier for her and Molly.

MOLLY

Caring for Molly was difficult for the day staff, as she resisted most attempts to get her up and dressed. Molly had severe cognitive and physical impairments; she needed assistance with all personal care. In the morning, she was usually curled up in a tight ball of resistance and soaking wet. It was challenging to care for her because she would strike out and scream at the care partners. She may have been frail and tiny, but she had a voice and strength that belied her size. Staff were desperate and called for a consultation.

A brief meeting, which I call a huddle, was scheduled to brainstorm approaches that might work with Molly. When one care partner said that she had no problems with Molly’s care, we all stared at her. What, we asked, was her secret? She very hesitantly told us that when she entered Molly’s room, she knocked on the door; said “Good morning, Grandma”; and kissed Molly on the cheek. The care partner had stumbled on calling Molly “Grandma” when she had told Molly one day that she reminded her of her own grandma. Molly had smiled, and her eyes had lit up. This “Good morning, Grandma” greeting became part of their special relationship.

After Molly was awake, the care partner would say that she was taking Fluffy (the cat who had been Molly’s best friend for years) off the bed so she could eat her cat food. She pantomimed removing the cat from the bed, after which Molly was happy to cooperate with her morning care. How did the care partner know about Fluffy, we asked? She replied that she had been as frustrated as the rest of her teammates, so when she saw family and friends visiting, she made it a point to find out all that she could about Molly. They told her about Fluffy and the strong relationship between Molly and her cat. Molly’s daughter remarked that her mother was very protective of her cat and had slept with Fluffy for years. It occurred to the care partner that Molly might be curled into a ball to cuddle the cat.

Despite her advanced dementia, Molly had a strong connection with memories of the cat. Once the cat was out of bed and happy, Molly was content to allow her “granddaughter” to help her get ready for the day, have breakfast, and be taken to the Namaste Care morning program.

People with dementia have difficulty dealing with the world around them, so eliminating excess disabilities is very important. Excess disabilities are impairments caused by factors other than the dementia itself, such as a lack of participation in daily activities or a lack of accommodations (Wood, 2020). Preventing excess disabilities includes ensuring that hearing aids are working properly, eyeglasses are clean, lighting is strong enough for people to see, and dentures fit. Unless the resident is clearly uncomfortable with wearing glasses, dentures, or hearing aids, these items should be maintained in good working order.

As the morning care ritual unfolds, care partners continually assess people for signs of pain. Pain assessment begins the moment a care partner walks into the room and continues with every interaction. Care partners learn to read body language by watching body movements and facial expressions and listening to the tone of people’s voices. As stated previously, the PAINAD Scale is a good tool to use for assessing pain (see Appendix F). If a care partner believes that a person is experiencing pain or discomfort, this finding should be reported to the nurse or the person’s physician.

By finding creative and effective approaches, care partners make their job responsibilities more fun and less like work. A new beatitude dedicated to their efforts might look like this:

Blessed are the care partners

Who are flexible

For they shall not break!

PREPARING THE NAMASTE CARE ROOM

Once breakfast has been served and most people are fed and groomed, the Namaste Care room is prepared for the morning activities. The daily program usually begins around 9:30 a.m., but this depends on the breakfast schedule. Responsibility for preparing the Namaste Care room for the morning program depends on how the program is staffed. Here are some of the ways that care homes prepare the room for programming:

- If there is a separate position for a Namaste Carer, that person may help with breakfast because so many people need assistance with meals. Afterwards, the Namaste Carer can gather the supplies for the morning activities and prepare the Namaste Care room, creating the calm environment.

- When the Namaste Carer changes from day to day, the person chosen for that day asks other care partners to watch over his or her assigned residents. This allows the person to gather the Namaste Care supplies and prepare the room for activities.

- If the room has been used for dining, the housekeeping staff cleans the floor. In U.S. care homes and assisted living communities, activity team members will help set up the room for the Namaste Care morning and afternoon programs.

All supplies must be in the room so that the Namaste Carer does not have to leave the room once the program begins. For the safety of everyone, the room is never left unattended. There is also always a way for the Namaste Carer to call for help in the event of an emergency.

A list of people participating in the Namaste Care program should also be available so that everyone in the care home knows who attends the program on a regular basis. Special diets with instructions for anyone who has swallowing difficulties should be noted with each person’s name, should always be in the Namaste Care room, and should be updated as needed.

Several tasks are recommended when preparing the room for the Namaste Care program. These recommendations are based on my experience; however, each care home or organization should develop its own list of tasks. It is useful to have this list readily available, as someone who usually does not work in the Namaste Care room will occasionally be asked to take over the program for the day. The team member responsible for opening the Namaste Care room will complete the following tasks prior to beginning the daily programming:

- Gather beverages for the day, such as juice, water, tea, or whatever people in the program enjoy drinking. It saves time to have some drinks poured and placed in a cup or glass with the person’s name on it. This way, the beverages will be available as soon as the person has entered the room and is comfortably seated.

- Collect food items for the day. Options have included oranges, pineapple, ice cream, puddings, cookies, lollipops, bits of chocolate for Namaste Care programs in Iceland, and yogurt for programs in Greece. Programs have tried to avoid using supplements because they are expensive and the goal is to offer food and beverages that people may have enjoyed in the past. Ideally, Namaste Care rooms have refrigerators so that food and beverages can be stored safely. Someone must be responsible for regularly cleaning out the refrigerator per regulations. In the United States, local and federal regulations often require a temperature chart to be filled in each day by a team member.

- Label all food and beverages according to regulations. Exposed food should be in a closed container with the date when it was opened.

- Remove any out-of-date food and beverage products from the refrigerator.

- Ensure these supplies are available: cups, napkins, a plastic serrated knife for cutting fruit, spoons, and straws.

- Gather towels, face cloths, basins, soap, lotion, mouth swabs, shaving cream, safety razors, and other items needed for the morning programming and personal care.

- Make sure pillowcases, quilts, and blankets are always available and are clean.

- Spend some time making the room look as homey as possible with tablecloths, fresh flowers, and items that will help make the space look like a room that people remember from the past.

- Spray the room with lavender or another pleasing scent.

- Water plants.

- Set the heat or air conditioning to a comfortable setting.

- Turn on the music.

- Play an appropriate DVD or streaming video.

- Hang a sign on the door that welcomes people into the Namaste Care room.

- Inform team members that the Namaste Care room has been opened.

CREATING THE CALM ENVIRONMENT

When people enter the Namaste Care room, they should feel as if they are enveloped in a calm, soothing environment, like being wrapped in a cocoon. Creating the ambience for the daily program includes playing appropriate music, infusing the room with a soothing scent, and setting the lights to help create a soft and pleasant aura. These three elements are to be in place before anyone enters the room.

Music

As anyone in the caregiving profession knows, music is a universal language. Evidence shows that even people who are comatose respond to music. The area of the brain that responds to music is the last to be affected by Alzheimer’s disease (Cuddy & Duffin, 2005). Music helps to create a calm feeling in the room. Consider playing the following types of music to convey different kinds of moods:

- New-age music that is soft and soothing for quiet time

- Nature sounds—birds singing, waterfalls trickling, and the echo of animals in the wild—for stimulating the senses during an activity

- Big-band music for range-of-motion exercises or to help awaken everyone before lunch and dinner

- Broadway musicals, such as Oklahoma, The Sound of Music, or The King and I, to evoke a reaction and have people clapping or tapping their toes in time to the music

- Love songs in the United States that were popular when most people in Namaste Care were younger, such as songs by Bing Crosby, Frank Sinatra, and Patti Page

- Classical music (Pachelbel’s “Canon” is a popular piece for creating a restful feeling.)

- Music of different cultures according to residents’ diverse backgrounds:

- Mexican mariachi
- Czech polkas
- Folk songs from European countries

- Calypso and reggae music from Latin American countries

- For residents from the United Kingdom, wartime songs like Vera Lynn’s “We’ll Meet Again” and Gracie Fields’ “Now Is the Hour”

- Music by Glenn Miller, which includes many lively songs

- Religious music, such as Christian hymns for Sunday services or Jewish songs for the Friday and Saturday Sabbath

Part of the adventure of Namaste Care is trying different music to create a mood that is consistent with what is occurring in the room. For instance, as people enter the room, the mood is intended to be tranquil on most days, so Pachelbel’s “Canon” is a good choice. However, after a few cloudy or rainy days, songs like “Oh, What a Beautiful Morning,” a popular song from the musical Oklahoma!, could be a wonderful greeting to lift everyone’s spirits.

Before lunch and dinner, sounds from the big-band era help wake people up for the meal. In Australia, “Waltzing Matilda” is a song played before meals, and in the Vermont Veterans’ Home in Bennington, Vermont (United States), we played a march. Hymns or other religious music might help people of faith to recognize the Sabbath day.

Namaste Care aims to make humor a part of every day. One activity professional I worked with in the United States came into the room wearing a rainbow wig and a red clown nose, accompanied by circus music featuring a calliope! Selecting music is one creative way that each Namaste Carer can add an individual touch to the day.

Scents

Lavender is the preferred scent for the Namaste Care room. Studies have shown that this scent decreases anxiety and is a calming agent (Lin et al., 2007). The scent must be strong enough for anyone entering the room to smell. A diffuser is the most effective way to fill the room with a fragrance. If the diffuser is electrical, it must be approved per regulations.

Other options for scenting the room include plug-ins, linen spray, and reed diffusers that are always placed out of reach for the people in the program. In some cases, a lavender room spray is used to ensure the room has the scent of lavender as soon as it opens because a diffuser may take some time to permeate the room. It also helps to have a stronger scent if the room is additionally used as a dining room and the smell of food has lingered after the meal. Lighted incense sticks or candles are never used because of the fire hazard they create.

Lighting

Lighting helps to set the mood of the room. Harsh overhead lighting can be avoided by having dimming switches installed for ceiling lights. Natural lighting is always the best option, but some rooms do not have windows large enough to offer sufficient light. Floor lamps might be the answer because this type of lighting is softer and helps make the room look homey.

Teamwork

Gathering people for the morning program is sometimes challenging for care partners because of the time it takes to get their morning assignments completed. Care homes in the United States may assign one or two managers and other team members to help take residents to the morning activities, with some people brought to the Namaste Care room and others to activities designed for the more oriented residents. Dedicating 15 minutes to help care partners in the morning is not a problem for most staff and helps the care partner to feel supported—culture change and real teamwork in action!

WELCOME TO NAMASTE CARE

After supplies, beverages, and food items are gathered; music is playing; lights are dimmed; and the room is staged with tablecloths, flowers, and other items to make it look and feel warm and inviting, the door is opened, and the Namaste Care program begins. It’s always especially interesting to see people’s reactions to the sensory impact of entering a room that had just been used for dining. The dining tables and chairs have been pushed to the side of the room and covered with colorful cloths; with the lights set on low, beautiful music playing, and the scent of lavender present, the space looks and feels very different. It really is not the dining room anymore! As they enter the room, team members, participants, and their families realize how unique and homelike this program is within a care home. This comforting and pleasant environment is a core part of what makes Namaste Care special to people like Matthew. The Namaste Care environment enveloped him from the moment he woke up each day and throughout all daily activities.

MATTHEW’S STORY

Matthew began the day by being gently awakened by the care partner assigned to him. He was changed, dressed, and groomed while the care partner talked about Matthew’s wife and children. After breakfast, Matthew was taken to the Namaste Care room, where soft and comforting music was playing. He was greeted by the Namaste Carer, taken from his wheelchair, and placed in a comfortable lounge chair close to the window. Matthew expressed how much he liked looking at the mountains when he was still able to communicate, so placing him near the window was a way to honor his wishes. Based on an evaluation by the rehabilitation therapist, Matthew was tucked in a quilt and surrounded by small pillows to ensure maximum comfort. Next to Matthew was an over-the-bed table with photos of his family and his life: pictures of his children; his wedding; and him and his wife, Celia, walking on the beach.

During the morning activities, Matthew was gently awakened by the sound of a bird (from a stuffed bird that makes genuine bird calls) and by conversation from the Namaste Carer about his interest in golf. His favorite bird was a pheasant because it made a call that sounded like his name. Celia particularly enjoyed making the little stuffed bird chirp “ma-coo”; she would laugh and hug her “ma-coo.”

A special treat for Matthew was getting shaved in the Namaste Care room. His chair would be placed near the sink. The Namaste Carer would greet him with a hug, then remark that he looked scruffy; he smiled. She told him that he was going to have a wonderful shave so that he would look handsome for his visit with Celia in the afternoon. After placing a barber cape around his shoulders, the Namaste Carer gently washed his face with a wet, warm face cloth and then placed a small, wet, warm towel on his face. The next step was to tell him about the shaving cream that was going to be smoothed on his face. She continued to talk to him as he was shaved. When finished, the Namaste Carer washed his face to remove any remaining shaving cream, then placed a kiss on Matthew’s cheek. This was one of the most pleasurable experiences for Matthew; he really showed a positive reaction, especially to the kiss! Celia told us that as a businessman, he was always well dressed and groomed for work, and that Matthew shaved every morning, even on the weekends. Although Matthew could not shave himself anymore, he was honored by keeping this ritual intact.

Matthew was not consuming enough calories during meals, so the Namaste Care team made sure he had high-calorie snacks and beverages throughout the day. Matthew had a sweet tooth, so he was often given a lollipop. After the morning program, he was taken to his room to be changed and then went to the dining room for lunch.

CHAPTER 4

The Namaste Care Group Program

Activities are meaningful when they reflect a person’s interests and lifestyle, are enjoyable to the person, help the person to feel useful, and provide a sense of belonging.

KATHY LAURENHUE

This chapter describes the range of activities that can be offered throughout the day. All activities can be adapted to suit the culture and the individuals in the care home. The possibilities are nearly endless!

NAMASTE CARE MORNING ACTIVITIES

When most people are in the Namaste Care™ room, programming begins. Many small group programs have one Namaste Carer in the room who offers activities to each person individually. Gloves are not worn unless required by regulations because the power of loving touch is more effective skin to skin. Because the Namaste Carer is moving around the room, each individual present can feel the movement and hear the Namaste Carer speaking to others. I believe that when people with dementia hear the Namaste Carer and sit close to each other, they experience a sense of being in the presence of others, even if they do not participate in an activity.

When family members or volunteers are in the room, they are invited to offer many of the activities to their loved one or to another person in the group, perhaps someone who does not have visitors. The only activity that they may not legally be able to offer is giving people beverages and food. The Namaste Care programs always follow the rules and regulations of the care home. In the United States, each state has its own regulations, along with federal regulations that everyone follows. In addition, most care homes also have their own protocols regarding food and beverages. The Namaste Carer will ask family members or volunteers to offer food and beverages if they are legally able to give them.

Families often enjoy offering beverages, food, or activities to a person who does not have family present. Family members often tell me that they feel useful when they can help provide Namaste Care. I have even known family members to return to the Namaste Care group after their loved one has died. These family members tell me that coming to the group helps them to cope with their loss, as they can continue to feel needed.

Personal Care and Grooming

Activities related to personal care, such as skin care, hair care, and shaving, provide group participants with comfort and connection. Everyone possesses inner beauty, but it is also important to attend to each person’s outer beauty and appearance so as to honor the individual and preserve self-esteem. Each Namaste Care program will have basic supplies related to personal care, such as a familiar face moisturizer. In the United States, Pond’s is a longstanding, familiar brand of face cream that many Americans would recognize. In other countries, Nivea was the most popular face cream. A less expensive skin moisturizer is used for the hands, arms, and legs.

Shaving cream and safety razors are included in the supplies gathered for shaving. The most familiar brand of aftershave lotion in many countries is Old Spice. I put some of the aftershave in inexpensive, unscented lotion. Families may also provide another face moisturizer or aftershave lotion, perhaps one the person used at home. All personal items supplied by the family will be kept in the person’s own bag of supplies. Names are placed on the bags, which are kept in a secure place when the program closes.

Moisturizing the Face

At the start of the morning program, all people who enjoy this activity have their face washed with a wet, warm cloth. Some Namaste Care rooms have sinks that can be used to wet the cloths with warm water or to fill a small basin with warm water to soak the cloths. Our first Namaste Carer, Mary Longtin, often placed dried lavender buds in the water. She said that the lavender filled the room with a lovely scent.

In some care homes, a sink is not available in the Namaste Care room. In that case, Namaste Carers wet small cloths with hot water in the closest sink to the Namaste Care room, then wring the cloths out and place them in a plastic bag. The cloths usually stay warm for the morning face-washing activity. The Namaste Carer should have a plastic bag for the used cloths so that they can be laundered for the next day.

After a gentle washing, the person’s face is not dried so that moisture stays on the skin. A moisturizer, such as Pond’s or Nivea, is then applied to the face as the Namaste Carer speaks gently to the person. Although grooming routines often differ for older adults based on aspects such as gender, culture, or tradition, I have found that people of all genders and backgrounds enjoy having their face moisturized.

Skin becomes drier with age, so the moisturizing activity is not only pleasurable, but also beneficial for skin health. Recommended supplies include a plastic spoon, cotton bud, and medication-dispensing cups for each person. The amount of cream needed for each person is put into the cup, and the Namaste Carer uses the cotton bud to stroke the cream on the person’s face. All items are placed in the trash bin after use. These practices avoid any danger of cross-contamination.

Using moisturizers that older adults remember from their younger days can elicit memories and positive responses from Namaste Care participants. In the United States, Pond’s Dry Skin Cream is in a jar that has not changed for many years, and the scent is the same since the product was first introduced in the early 1900s. Applying a familiar skin moisturizer to a person’s face can be a wonderful reminiscence activity. Once, I was demonstrating this face-moisturizing activity with a resident who had stopped speaking. You can imagine the team members’ surprised faces when I showed the resident a jar of Pond’s and she started talking. “Oh, Pond’s! I’ve used it all of my life, or I would look like a prune now!”

Shaving

Shaving is another grooming routine that can be made into a pleasurable sensory activity. When providing shaving and other grooming activities in the Namaste Care room, it is important to ascertain what each person enjoys and what care routines help people to look and feel their best. Older adults have diverse backgrounds that influence their personal aesthetic and how they conceptualize beauty and wellness. Gender identity is one factor that can especially impact which personal care activities are preferred and enjoyed. Although shaving facial hair is a more common routine for men, facial hair on women and on transgender and gender-nonconforming people may also need attention.

Shaving is usually too time consuming to provide as an activity for every Namaste Care participant who shaves. For this reason, the Namaste Carer schedules this activity with the care partner in advance if shaving will be part of the person’s morning program. For example, on the day a resident is to receive a shave in the Namaste Care room, the care partner is aware of this and does not shave the person before breakfast.

The act of shaving in public could be viewed as a violation of privacy, so the Namaste Carer must be sensitive to how a person reacts to being shaved in the Namaste Care room and should honor each person’s preference. As with all activities, shaving must be enjoyable for the person, and if privacy is desired, then this grooming task should take place in the resident’s room rather than in the Namaste Care room. Many countries have regulations about who can shave a person with a safety razor, and the Namaste Carer should be aware of these regulations.

For people who visited a barber shop, shaving can be made into an enjoyable activity when performed the “old-fashioned way” that they remember from years ago—with a shaving cape; a warm, moist towel applied to their face; a familiar shaving cream; gentle strokes with a safety razor; and a familiar aftershave, such as Old Spice. Whenever I smell Old Spice, my father’s favorite, I am reminded of him, and that brings a smile to my face. One care partner, Earl, used Old Spice to evoke a similar response from a resident.

EARL

Earl was a care partner in the Vermont Veterans’ Home, the place where Namaste Care began. On most days, he was responsible for shaving Jerry, one particular resident who did not like to be shaved. Earl was a good care partner and used several approaches to help make Jerry comfortable, but they did not work. The end result was that some days Jerry was not shaved, which was upsetting to the resident’s family. One day, Earl took Jerry to the Namaste Care room to give him an old-fashioned shave. The Namaste Carer showed Jerry the barber cape, safety razors, shaving cream, and Old Spice aftershave. When Jerry saw these items, he was aware that he was going to be shaved and was agreeable to this normal morning ritual. Earl was pleasantly surprised to find that Jerry actually smiled when he was shaved. He may have remembered that when he was younger, going to a barber for a shave was a luxury and a pleasurable experience. Maybe he also remembered that when the shave ended, he would get a kiss on the cheek from Mary Longtin, the Namaste Carer, who declared him to be the handsomest man in the room!

When shaving a resident or providing any other personal care, it’s important to keep in mind any age-related physical changes that could negatively impact a person’s self-esteem, such as hair loss and changes in hair growth. For example, as women age, their facial hair may get coarser, such as on the chin and around the lips (ADAM Health Solutions, 2021). For some older women and their families, more noticeable facial hair may cause embarrassment and be an unwanted change in their appearance. Electrolysis is not a good option for women with advanced dementia, but facial hair can usually be removed quickly and without any problems using a safety razor, which should be disposed of afterward. As stated previously, if any person might feel self-conscious about hair removal, this activity should always take place in residents’ rooms or behind a screen in the Namaste Care room. Remember that privacy and respect are always paramount when it comes to grooming activities. Taking pride in how each person looks shows respect for all Namaste Care participants and their families.

Makeup

Applying makeup, such as lipstick, may be a routine activity for many people. In the United States, attractive cosmetic bags can be purchased very inexpensively (e.g., at a dollar store or drug store) and given to people who have their own makeup, decorative hair pins, or other personal care items. Cosmetic bags should be easy to clean and have a zipper to keep items from falling out. Some Namaste Care participants enjoy having makeup applied every day as their special morning activity. Makeup, beauty, and fashion were lifelong interests for Eleanor, one Namaste Care participant.

ELEANOR

Eleanor was a model years ago. Her family proudly showed photographs of her modeling the latest Paris fashions. Throughout most of her life, Eleanor loved dressing up and would never think about going out without full makeup. Actually, family members noticed the beginning of her dementia when she started looking, in their words, bizarre. Her eyebrow liner went every which way, far above or below her eyebrows, and her eye shadow was much too dark. Lipstick went beyond her lips, and her hair, once meticulously colored and maintained with a weekly trip to the beauty parlor, was uncombed on most days. It was apparent that Eleanor was forgetting beauty-shop appointments, something she never would have done in the past. As the disease progressed, she lost all ability to groom herself and did not seem to care about her appearance anymore. It was devastating for the family to see Eleanor without her makeup and nicely groomed hair. The Namaste Carer recognized that the best way to honor Eleanor was to provide special grooming in the morning and to have her care partners dress her in the beautiful clothing provided by the family. Beauty-shop appointments were also made by the family. Eleanor, with her full makeup, combed hair, and fashionable dress, became the Namaste Care Beauty Queen!

Hair Care

After everyone’s faces have been washed and moisturized, the Namaste Carer combs or brushes each person’s hair with gentle strokes. Even those with thin hair or no hair seem to enjoy having their scalp massaged. Gloves are not worn, and Namaste Carers sanitize their hands after each hair care activity. A comb or brush is kept in each participant’s personal supply bag.

Short hair is easier to groom, and if a person can tolerate getting a permanent, it is a way to keep the hair looking nice. For people with advanced dementia, beauty-shop appointments are often dismissed as unnecessary because sitting under a strange object (hair drier) or even having their hair blown dry can be a frightening experience. However, some people, like my mother Doris, have told their families that they want to get their hair done no matter their age.

DORIS

My mother, Doris Simard, told me that no matter her physical condition or her age, she always wanted to look like she was a “natural blonde” until the day she was buried. As an only child, I was responsible for carrying out my mother’s last wishes. These instructions included how she wanted to look when she died, such as which dress she was to wear in the casket and how she wanted her hair to look. She wanted to ensure that no one would ever see Doris Simard with gray hair, either in the nursing home or when she had died and was in an open casket. She had a very disabling stroke that left her unable to speak, but I made sure that she had her hair colored while she was in the nursing home. Following my mother’s instructions, she was a “natural blonde” for the public viewing. I’m sure no one suspected that 87-year-old Doris Simard colored her hair!

Often, I do not use a comb or brush, but simply “fuss” with a person’s hair using my fingers. I find that in every country I visit, fussing with people’s hair usually produces smiles. Perhaps this gesture triggers long-term memories of their parents or other loved ones touching their hair. Once, I was able to carry out this technique with a person close to me.

JACQUE

My dear friend Jacque was in the last stage of a 10-year fight with cancer. She and her husband, Dave, chose to have her die in their home. Jacque would sometimes become very agitated, and when she did, Dave would call me. I was busy writing the revision of this book at the time, but would stop writing, gather my Namaste Care supplies, and drive to their home. As soon as I arrived, I’d sit by Jacque’s bed and gently touch her hair. She would turn her head towards me, give me a huge smile, and simply say, “I love you.” I would make sure that calming music was playing, spray a lavender scent in the air, and do what I was writing about! She loved me fussing with her hair and massaging her hands. Very quickly the agitation would disappear, and she would fall into a peaceful sleep.

In Namaste Care programs around the world, the loving-touch approach shines through in hair care and in all personal care activities. Touch is a powerful and simple way to connect with people, as shown in Maria’s story.

MARIA

I was in Singapore visiting Dover Park Hospice and was taken to a room where a large-screen television played a rainforest video. The beautiful colors of the trees and flowers and the sound of rain were very comforting. Five social workers were giving five people hand massages. When they finished, I wanted to show them how Namaste Care could incorporate additional forms of comforting touch. With their permission, I kneeled down before a very attractive young woman who had long brown hair. I introduced myself and asked if I could fuss with her hair. She said “yes.” I stood behind her and gently stroked her hair for about 15 minutes. When I finished, I got on my knees, so we were eye to eye. I asked if that felt good. She looked at me, smiled, and said, “I love you” (Simard, 2019).

Care partners continue to amaze me. They are not highly paid in any country I have visited, and their job typically does not carry a high status. I believe that care partners stay in this field because they have the heart for providing care. Staff members like Sara are the reason why Namaste Care is so honoring and healing to people with dementia. Sara continued to cherish each resident’s individuality, giving personalized time and attention even when the person did not outwardly respond to the activity.

SARA

While visiting the first Namaste Care program in Bennington, Vermont, I observed Sara, a care partner, lovingly braiding the long hair of Ann, a resident who had progressed in her dementia to the point of almost never responding to any kind of touch. When I asked Sara why she took the time to braid Ann’s hair when the resident didn’t seem to care, Sara responded that she had seen a photo of Ann in her younger days and had noticed how beautifully her hair was braided. Because Sara found so little that she could do just for Ann, braiding her hair became Sara’s way of showing respect for this resident and honoring her as an individual.

Food and Beverages

As cognitive impairments increase, the appetite of a person with dementia decreases, and eating problems arise (Gillick & Mitchell, 2002). Although these changes are a normal, natural way for the body to prepare for the last stage of life, they are very troubling for families and care partners. Weight loss is almost always a concern in advanced dementia, as the person’s ability to feel hunger and thirst seems to disappear. Eating difficulties can lead to dehydration and increase the risk of infections. In the United States, urinary tract infections are a common cause of hospital admissions for older adults (Fu et al., 2017).

Although eating problems often arise as dementia progresses, each person is unique. Rather than just accepting food refusal as normal for advanced dementia, it is good practice to perform an assessment when people begin resisting food. This evaluation helps determine potential causes for loss of appetite (e.g., psychological factors, such as apathy or depression). Antidepressants and other medications may help to improve mood and appetite, but they may also cause dry mouth, constipation, diarrhea, and other unpleasant side effects.

In the Namaste Care program, eating is encouraged by tempting people with small offerings of easy-to-swallow foods and beverages. I have found that until people begin to actively die, they seem to enjoy drinking and eating while they are in the Namaste Care room. The atmosphere in the room seems to stimulate appetites, perhaps because others are around, the room looks homey, and memories of the pleasures of eating resurface.

When I worked with activity professionals in U.S. nursing homes, they would often describe a similar effect during outings at a restaurant where they took people for lunch. They discovered that many people who needed help eating while in the nursing home suddenly became very independent with eating skills at the restaurant. They were also more social and displayed excellent table manners. The atmosphere of the restaurant seemed to trigger their long-term memories of eating out, as people knew how to act while in this setting. Perhaps the same logic could be applied to the Namaste Care program. Because it resembles home, the Namaste Care room elicits long-term memories of how to act as a guest in someone’s house, and people remember that it is polite to eat and drink what is offered to them.

Food and beverages are an important part of Namaste Care. Team members should be aware of health and safety considerations for people with advanced dementia, as well as which foods and beverages will best encourage residents to eat and drink.

Swallowing Problems

Occasionally, a person with dementia will have problems with swallowing as the disease progresses. Namaste Carers should watch for any swallowing problems—observation is critical when people have limited means to communicate verbally. When swallowing difficulties occur, it may be helpful to have a speech therapist evaluate the person’s swallowing ability, with assessment guided by Namaste Care principles and a consideration for quality of life.

Possible interventions for swallowing problems vary. Sometimes, a feeding tube is considered. For residents with advanced dementia, however, feeding tubes do not extend life and have many drawbacks. Registered dietitians who are skilled in nutritional assessment can recommend different textures of food or show how to thicken liquids. However, thickening liquids may not prevent aspiration, may make swallowing more difficult, and can lead to dehydration (Campbell-Taylor, 2008).

For safety reasons, Namaste Carers should be informed about any person who has swallowing difficulties. Those who have swallowing difficulties or who pouch food in their cheeks should sit upright as they are being fed to aid in the swallowing process.

Beverages

Continuous hydration is an important part of the Namaste Care program. Small pieces of food items and beverages are offered by hand as a normal part of the day’s activities. All participants are offered a beverage in a cup marked with their name as soon as they are made comfortable in the room. Then, when the Namaste Carer has finished washing everyone’s face and hands, applying moisturizer, and combing hair, each person is offered more to drink throughout the morning program. When other care partners and managers come into the Namaste Care room, they can assist with offering beverages. Nurses have reported that increasing the amount of liquid consumed by residents in the Namaste Care program has decreased infections, especially urinary tract infections, as well as skin tears.

In most countries, beverages are served at room temperature rather than cold or with ice. Beverage selections often depend on the season. In the summer, some people prefer cold beverages, whereas in cold winter months, a warm beverage is the most comforting. Using straws can be helpful, as one of the last reflexes to disappear at the end of life is the ability to suck. Straws, especially short ones, do not require much energy for sucking and seem to be effective even for people who usually do not drink (Asplund, Norberg, & Adolfsson, 1991; Franssen, Reisberg, Kluger, Sinaiko, & Boja, 1991). If a person does not seem to recognize the straw or cup, some of the liquid can be placed on the individual’s lips to provide a taste of what will be offered. Food or liquid is never forced on a person—we always honor people’s choices, as difficult as it may be for Namaste Carers and for families to see someone give up on eating and drinking.

Options for beverages vary depending on where Namaste Care is provided and the individual’s preferences and needs. Here are just a few beverage options and considerations:

- In the United States, people usually like sweet juices. People are offered different choices, or the Namaste Carer may know which juice produces the biggest smile from each person. This information is communicated so that all team members know a person’s preference.

- Cranberry juice is especially beneficial for preventing urinary tract infections in women.

- Milk and buttermilk add calories but are constipating.

- Ginger ale is a popular comfort drink in the United States. The sweetness is appealing, but the bubbles may be bothersome; leaving the bottle uncapped will decrease the number of bubbles but keep the taste intact.

- In Singapore, warm water or warm tea is the preferred beverage.

- In the United Kingdom, tea is the favorite beverage and is offered continually during the morning and afternoon programs.

Choosing cups or containers for beverages is another consideration that may vary by country or culture. Here are just a few options:

- In Namaste Care programs in Australia, the care homes use sipping cups marked with the person’s name that are washed in the dishwasher. Some cups have two handles, which seems to help people hold the cups and drink independently without spilling the contents.

- One creative nursing home in the United States offers beverages in colorful travel mugs because they do not look institutional.

- In care homes located in the United Kingdom, the afternoon beverage is often tea served in china teacups from a tea trolley. In one home, the head of the dietary department told me many of the residents had worked at companies that hired a “tea lady,” who rolled around the workplace from desk to desk, offering tea to the employees. This practice was emulated in the Namaste Care room and seemed to trigger long-term memories and responses in the participants. I saw people who were unable to hold large cups with handles daintily hold the teacups!

- In other countries, paper throwaway cups with covers and a straw are the easiest to use. The cup is marked with the person’s name and kept nearby so that anyone can easily find the person’s beverage and offer it during the program.

Even if someone does not seem to understand that beverages are being offered, the person is told that a delicious drink has been prepared. Namaste Carers place the person’s hands around the cup and encourage every sip that is taken. For someone who is difficult to rouse, the Namaste Carer can gently stroke that person’s cheek while talking to the individual. This can be a comforting way to help some people wake up, get oriented, and take a drink.

Offering Food and Nourishment

Families like hearing that their loved one enjoyed some nourishment that day, and they often welcome the chance to do something productive when visiting, such as helping their family member to eat and drink. This meaningful activity can ease the difficulty and frustration of visits with a family member who is no longer able to communicate. Families and Namaste Carers always offer food in a way that is gentle, kind, and respectful. There are a number of options for foods to offer during Namaste Care.

Fruit. Fruits are a wonderful source of nourishment and hydration for people with advanced dementia. Pineapple is appealing to some people. Canned, crushed pineapple is easy to swallow, stimulates the saliva and digestive juices, and has a chemical effect on the mouth that promotes good mouth hygiene. Oranges sliced in quarters are also enjoyed by many residents, as they can suck on them. The Namaste Carer holds the orange slice close to the person’s nose. Then, a few drops of the juice are placed on the person’s lips. This often stimulates the person to suck on the orange slice. Oranges were particularly enticing to one resident, Sam, who had eating difficulties at the end of his life.

SAM

Sam, a wisp of a man who hardly ate or drank, was surrounded by love in the Namaste Care program. Care partners were always so tender and exceedingly gentle as they moved him from chair to bed. Sam had almost no recognizable speech, but he had gentle and very aware eyes. It seemed like he knew when people were present for him.

One day during my consulting visit, I decided to give Sam a taste of an orange. I approached him with a piece of the orange and introduced myself. When I put the orange under his nose, Sam immediately opened his eyes. I gave him a slice, and he sucked on it with such vigor; his strength surprised me. Then, he looked at me with such gratefulness and love that I knew how much he enjoyed this small activity of eating an orange. The moment was special to him as well as me. From then on, my visits to the nursing home always included visiting Sam with an orange.

Lollipops. These are a fun way to keep the mouth moist. Small lollipops are inexpensive and easy to suck. Most people will not chew on them because they lack the teeth or the strength to bite down. As always, assessment and observation are important to prevent problems.

In the United States, lollipops were often considered a very special treat, especially during the Great Depression when sugar was expensive and in short supply. Lollipops are an inexpensive option for that generation. People who grew up during that time usually respond positively when a Namaste Carer offers a lollipop; their smiles brighten the room. Family members usually also smile when they enter the Namaste Care room and find their loved one sucking on a lollipop.

Lollipops can be soothing for agitated residents. When I was a consultant in a Massachusetts nursing home, one woman said “I want to go home” constantly. We were at a loss as to how to discourage her from repeating this, and other residents were frustrated and often told her to “shut up.” Out of ideas, I gave this resident a lollipop. She immediately stopped saying “I want to go home” and started sucking it with a contented smile on her face.

Smoothies. Some Namaste Care rooms have blenders to make smoothies, or the food service staff make them for each session of Namaste Care. These mixtures of fruit and high-calorie liquid are easy to make and are beneficial for the person who has not eaten breakfast or who needs the extra calories. Delicious smoothies can be made at a moment’s notice and in small amounts. Use high-calorie products, such as ice cream, sherbets, and canned fruit, that satisfy the sweet tooth and may help to decrease weight loss.

Yogurt. A preferred treat in Greece, yogurt is easily swallowed and comes in a variety of flavors. For people who have difficulty swallowing, yogurt carries less danger of choking and aspirating than does milk. It also increases the healthy microbes in the intestines. Yogurt can be purchased in small, individual servings, and many yogurts include sweet fruit syrup.

Transitioning to Lunch

The activities of washing and moisturizing people’s faces, hands, and arms; brushing or fussing with their hair; and continually offering beverages usually take up most of the available time for the morning program. About 20 minutes before the morning program closes, the Namaste Carer changes the atmosphere in the room to help wake people up for lunch.

WAKE UP; IT’S TIME FOR LUNCH!

Shortly before lunch, the Namaste Carer brightens the lights in the room and plays livelier music. This part of the program is a time to have some fun. A brief activity is offered to stimulate people who have been sleeping and prepare them to leave the room for lunch.

Seasonal Activity Ideas

Activities just before lunch are meant to provide an enjoyable, sensory experience. The offered activity often provides clues as to the current season or an upcoming holiday through the use of seasonal items and scents. The Namaste Carer is encouraged to be creative in finding different ways to engage people’s senses that coordinate with the activity that is occurring. For instance, a U.S. nursing home located in the Cape Cod region of Massachusetts uses the scent of the sea and plays “Old Cape Cod,” a song that was popular in the 1950s. During this activity, people wear sun hats, and basins of beach sand are available for them to feel. The Namaste Carer also plays the sounds of squawking seagulls flying over the ocean that are so familiar to “Cape Codders.” This sensory experience may help surface memories of happy days on vacation at the beach.

During the winter in countries where it snows, the scent of cinnamon or smoke from a wood fire provides a warm feeling. In the United States, a popular winter song for residents is Bing Crosby’s “Let It Snow”; while the song is playing, the Namaste Carer passes a basin of snow around for people to touch. In the spring season, floral scents are often used, such as the scent of lily-of-the-valley, lilacs, and hyacinths. Team members sometimes bring in fresh flowers from their own gardens—in the springtime, flowers seem to sprout everywhere, and they are free. Even the lowly dandelion can evoke a smile from people, especially if they can blow on the seed head. The mess created by this exercise may not be appreciated by the housekeeper, but everyone in the room often loves this activity.

Summer brings the scents of fragrant roses, watermelon, and rain. Namaste Carers might offer people small, colorful umbrellas to hold. A gentle spray of water helps everyone feel as if it were raining. In countries where a crisp, cool fall follows the hot summer months, the aroma of apples and cinnamon is appropriate. For me, growing up in New Hampshire, fall was a time when my father would rake the leaves that had fallen from the trees and have a bonfire. Long before regulations made it illegal to burn leaves in your backyard, this activity was a family tradition and a strong indication that fall had arrived. Although Namaste Care participants can’t enjoy a live bonfire, even the seasonal scent of burning leaves has been bottled and sold as a fragrance, providing a creative way to simulate this old-time outdoor experience inside. An online search can reveal a vast array of bottled scents for almost any occasion.

The best scents, of course, are the real things. One Namaste Carer kept the room filled with lilacs when they were in bloom. Another brought freshly cut grass during the summer. Supplies for Namaste Care programming are as basic as the program itself. It is all about the fundamentals of life, and nature is one of them. Keeping fresh flowers in the room is always a welcome touch. However, make sure that no one is allergic to them. Consider purchasing African violets, which bloom year-round. Or, talk to a local funeral home about delivering flowers after a funeral is over. Think of these flowers as a final gift from a stranger, who even in death can touch our lives. Taken apart and put in vases, the flowers can fill the room with beauty and fragrance.

Another authentic scent is the smell of real bread baking. Consider purchasing a bread maker and easy-to-use mixes. As an added bonus, people who have poor appetites may be tempted to eat the homemade bread.

Activities to engage Namaste Care participants often are designed around upcoming holidays. Holiday items that might trigger memories for people include some of the following:

- Hats and noisemakers for New Year’s Eve

- Red hearts for Valentine’s Day

- Easter baskets with colorful plastic eggs and flowered Easter hats for Easter

- Matzo, Kiddush cups, and other religious items for Passover

- In the United States, American flags and red, white, and blue colors for the Fourth of July

- Cornucopias and cut-out turkeys for Thanksgiving in the United States

- Christmas ornaments and Santa hats for Christmas

- Mandarin oranges and red lanterns that are hung for the Chinese New Year, as practiced at Dover Park Hospice in Singapore

- Mooncakes served for the Mooncake Festival (traditional holiday celebrated by people in many countries, including Singapore, mainland China, Taiwan, Hong Kong, Macau, and Vietnam)

- Flags for National Day (Singapore)

Familiar Items

To provide a hands-on, tactile experience for Namaste Care participants, familiar items are often used in activities. Often, these items can be simple household objects. For example, passing around a rolling pin and other cooking or baking items may be interesting for people who loved cooking and spending time in their kitchens. Grilling utensils and accessories, such as a large apron and special implements for cooking hot dogs and hamburgers, can remind people of backyard barbeques or picnics in the park. Make sure these items do not have sharp edges, as people may want to hold them.

Other items that can be passed around include old irons for ironing clothes and pictures of cities, towns, parks, or other places where families visited or vacationed. Pictures and photos should be placed in plastic covers for infection control. Some care homes have a coat rack with various hats, and one home I visited has an old wedding dress that produces many smiles.

Items used in activities will depend on the country, cultural backgrounds, and life experiences of the participants. In England, familiar items of significance may include teapots and tea cozies, ration cards, stylish hats, and pictures of favorite soccer stars. Namaste Care programs in Australia show pictures of kangaroos and didgeridoos, a popular instrument played by Aboriginal peoples. Some veterans may appreciate war mementos, but these must be used carefully to ensure that they do not produce anxiety or trigger traumatic memories.

Items that remind people of their children or their own childhood may be appreciated. Some people find it enjoyable to pass around pictures of children’s clothing and toys from when their children were young. Realistic sports items can be touched and tossed with the Namaste Carer, including soccer balls, baseballs, footballs, and basketballs. Let your imagination run free, and make before-lunch activities a fun time for all.

When team members come to take people to the dining room for lunch, all participants are individually thanked for joining the group, and the Namaste Carer gives each person a hug, handshake, or whatever is appropriate for the individual. The care partner is also thanked for coming to take the person to lunch.

Morning Documentation

If the program is in a care home, the Namaste Carer may have lunch and prepare for the afternoon program. After everyone has left the room, the Namaste Carer ensures that food supplies are stored properly and that the space is tidied up for the afternoon session. I suggest that an attendance record be maintained. Some Namaste Carers use a checklist to show what activities people have participated in during the morning program (Appendix D).

I also recommend that Namaste Carers maintain a Namaste Care journal and secure this documentation in the room where the program takes place. Notes made in the journal are a good way of communicating information to anyone responsible for leading the group program. Helpful information can include which activities each person really enjoys and ideas for how to individualize activities for the participants. For instance, the Namaste Carer might note in the journal that Jack needs to exercise his arms, but that he is quite resistant to exercising unless “I’m In the Mood for Love” is playing, a song that he danced to at his wedding.

The Namaste Care journal not only includes notes about the Namaste Care participants, but also any important information about their families. For example, in one Namaste Care program, two husbands visited their wives every day. The men began a friendship because the Namaste Carer always placed their spouses next to each other. Although their wives could not communicate, the two men spent the afternoon talking with each other as they gave their spouses hand massages. Long after their wives had died, these men continued their friendship and helped each other adjust to being widowers.

Sensitive, very personal information should not be noted in the Namaste Care journal. As an example, one husband was often inebriated when he visited. This information was given to the manager of the home and was not put in the journal.

THE NAMASTE CARE AFTERNOON ACTIVITIES

In a care home, the care partner ensures that people participating in the afternoon program are groomed and toileted before they are taken back to the Namaste Care room. For people who have very fragile skin, positioning them with pillows in their rooms helps to maintain good skin integrity.

If possible, it is preferable for Namaste Care participants to attend both the morning and afternoon programs. People who are unable to participate in activities designed for more oriented residents may spend many hours isolated in their rooms when they are not in the Namaste Care room. For this reason, even residents who are sleeping or tired should ideally be included in the Namaste Care program. Instead of sleeping in their rooms, people can nap in the Namaste Care room, where they are with others and there is a sense of movement and life. If the person is asleep, the Namaste Carer gently touches the individual and speaks about the activity being offered. If the person does not wake up, the Namaste Carer moves on. Nurses have noticed a decreased need for sleeping medications among Namaste Care participants because people are not sleeping as much during the day when they are engaged in activities.

The room is prepared for the afternoon activities the same way it was prepared for the morning program: with the scent of lavender, dim lighting, and calm music. After lunch, everyone is welcomed back and assessed for pain or discomfort. People are once again made comfortable, with their individual quilts or blankets tucked around them. They are offered a beverage, as continuous hydration continues to be an important activity in the afternoon.

Beginning the Afternoon Activities

Afternoon activities differ somewhat from the morning program activities. People who did not attend the morning program will have their hands and faces washed and moisturized, and their hair combed. Those who attended the morning session will have different activities offered to them in the afternoon.

At the start of the program, a large-screen television might be playing a relaxing video, such as scenes from the rainforest. The splashes of color and movement of waterfalls or animals seem to attract the attention of some people. After an hour of playing the restful video, when many people take short naps, the Namaste Carer may play a popular television show that people might remember from the past to help them wake up. In the United States, I Love Lucy is often a favorite show, and in the United Kingdom, people might enjoy watching Coronation Street. Videos showing puppies, kittens, or other animals may be interesting to animal lovers.

Soft, Fun, Furry, and Familiar

During the afternoon program, the Namaste Carer visits each person with a variety of items to stimulate memories. Various fabrics, such as cashmere, silk, velvet, or knit fabrics, have different textures that may elicit memories of wearing garments made from those materials. Choose clothing items that are familiar and appreciated by the person. Preferred clothing styles often differ by gender or may vary by region or culture. For example, women may enjoy shawls and gowns, and men hats and jackets, although it’s best to discern what each individual likes, as everyone’s style is unique.

One activity involving clothing is to show people different shawls and ask them to choose one they like the best; the shawl is then draped over their shoulders. Some thrift shops have high-end articles of clothing, such as evening gowns, tuxedos, and leather jackets, that often produce smiles from people, uncovering memories of dances and special occasions when they were dressed in their finest. Wedding gowns are another favorite; people often like to touch the lace and beading on the dresses. These gowns are inexpensive when purchased at second-hand stores. Families and team members may also donate unused gowns.

Many people enjoy hats and seem to recall wearing them when they went out for lunch, to attend religious services, or as part of a work uniform. My father was a police officer and enjoyed telling me about his life directing traffic and helping children cross the street. If he had been in Namaste Care, Emile Simard would have been wearing his police hat.

For residents who served in the military, military jackets and hats may offer some pleasant or proud memories. As stated previously, use caution when presenting such items—the Namaste Carer should carefully observe the person to judge whether the item provokes pleasant or unpleasant memories. For one care home in the United States, the Veterans of Foreign Wars (organization of U.S. veterans) gave me jackets and hats that veterans might have worn in the past if they had joined a branch of the armed forces. Using these items, I created a special veterans display with the American flag mounted on the wall, but easy to reach. When I took the flag down, I would ask one of the veterans to hold it while I said the Pledge of Allegiance. I would then ask another veteran to hold the flag while I sang “God Bless America.” The various uniforms and hats hanging on the wall helped many veterans recall good memories from their days of serving in the military.

When the Namaste Care room is large and can be secured, I place several coat racks around the room with gowns, scarves, and other articles of clothing hung on them. Hanging old clothing on coat or hat racks helps to give the room a warm, homey feeling and makes the items very accessible for people to touch. As a reminder of the weather or time of year, coat and hat racks could be hung with seasonal clothing items. Sun hats and fans can be used in the summer months. Knitted hats, earmuffs, and scarves hung in the winter are reminders of the cold winters in many countries. Sports jerseys, pendants, and flags can also be used to represent the season when a sport is being played.

Realistic plush animals (e.g., stuffed dogs and cats) can be especially enjoyable for animal lovers. Recently, a man who had not spoken for several months took a realistic plush dog from me and placed it on his lap. He then began petting it and I thanked him for taking care of the dog. About 15 minutes later, I stopped to say something to him, and as soon as I was at eye level, he said, “Do you think he likes me?” I assured him that the dog liked him very much. For infection-control purposes, a stuffed dog like this one stays with the Namaste Care supplies in a bag with the person’s name on it. Occasionally, the person will not give up the “pet,” which leaves the Namaste Care program with its “owner.”

Several inexpensive and fun items are effective in producing chuckles from the participants, including colorful pinwheels, bubble wands, colorful small balls, and chattering fake teeth. Soft but realistic sports items are also popular, including golf equipment, basketballs, soccer balls, baseballs, and footballs. Small replicas of these balls can be found in children’s toy stores. These balls are easy to hold and seem to work well in getting responses from people, even though they are not the real, full-size versions. Pictures of famous athletes and movie stars (in plastic covers) may trigger memories, depending on the person’s level of awareness and interests.

People with advanced dementia clearly can still have smiles and laughter in their lives, but eliciting these responses takes some thought on the part of the Namaste Carer. The Namaste Carer needs to determine what item will produce these happy moments. For instance, one resident, Muriel, loved having an evening gown draped around her, while a resident named Michael held tightly to his University of Michigan football sweater. Sometimes, families can help identify items their loved ones will enjoy. Other times, the Namaste Carers keep trying different items until they find one that creates a positive response. Be sure to communicate successful items and activities to other Namaste Carers (e.g., using the Namaste Care journal). The story of Joe shows how incorporating people’s interests in Namaste Care activities can have a powerful effect.

JOE

Joe did not appear to be interested in any of the items shown to him during the afternoon program. The Namaste Carer met with his family to ask if Joe had any hobbies and to find out what might be of interest to him. According to his family, Joe was an avid fan of the Boston Red Sox, a popular baseball team in the state of Massachusetts. The Namaste Carer decided to see if he would show any interest in items related to his favorite team. When a baseball glove and ball, a Red Sox hat, and pictures of players he had admired were placed on a table near him, Joe became a happy man. His family bought him his own Red Sox hat, and when they placed it on his head, it produced a huge smile. Joe held the baseball and glove and gently caressed the leather. Joe was unable to communicate, so imagine how surprised the Namaste Carer and his family were when he joined them in singing “Take Me Out to the Ball Game”!

Exercise

Namaste Care participants usually have lost the ability to exercise independently; they cannot follow directions and rarely move their hands and legs. One of the afternoon activities will involve getting everyone moving in some way to help prevent contractures and get the blood circulating. A physical therapist can show the Namaste Carer how to make this activity pleasant and beneficial for the participants. Passive range-of-motion exercises include slow movement of the hands, fingers, arms, feet, and legs.

During range-of-motion activities, care partners must continually assess the person’s facial reactions and verbal sounds for signs of discomfort. The Namaste Carer can show family members how to exercise with their loved one during their visits, and the family may know how to make exercising fun for the person (e.g., by playing music the individual danced to in the past).

Most people with advanced dementia cannot walk, and getting their legs and feet to move can be challenging. I have found that the best exercise for the feet is marching while seated. The Namaste Carer plays a marching song and then marches around the room, encouraging people to join by marching in their chairs. Music can be incorporated in other exercises as well. People can be positioned in a circle, and big-band sounds or a march can be played while the Namaste Carer demonstrates hand and arm movements for the group to imitate. These movements can be familiar motions that people recognize and remember doing, such as dancing, rowing a boat, and stirring a pot of gravy so that it doesn’t stick. Clapping the hands; moving the head to indicate “yes” or “no”; and shaking hands with the Namaste Carer, family members, or volunteers are all good ways to exercise people’s hands and arms.

Balls and sports items can be incorporated into exercises. In the United States, some people will try to kick a football, whereas in other countries, a soccer ball is more frequently used. Another predominately American sport is basketball. These balls are easy to hold, as they are quite large. Participants may recognize balls used during activities and toss them to the Namaste Carer. Tossing a colorful beach ball during the summer months is not only a great exercise, but also a reminder of the season. Likewise, small Styrofoam balls can be used to resemble snowballs in the winter months.

Exercise can also be done with guided imagery. Tell a story and use the person’s arms and hands to describe the image. For example, the Namaste Carer says, “Let’s look at how the sun is rising in the morning,” and raises a person’s arms as high as they will go without pain. Next, the Namaste Carer talks about the breeze ruffling leaves in the trees, and has people flutter their fingers. When I was in Honolulu, Hawaii (United States), the Namaste Carer had people performing hula movements to Hawaiian music, with the scent of gardenias in the room.

Another exercise idea is catching bubbles, a fun activity that draws on childhood memories. Bottles of bubbles used as favors at children’s birthday parties can be used to remind people of games they played when they were young. I recommend bubble wands that produce large bubbles, which are easier for people to see and try to catch. Catching bubbles is a good exercise for the arms and hands. Once, I placed the bubble wand in front of one person’s face, and he blew the bubbles. This participant seemed to enjoy being the one in charge of the bubble blowing, taking my job away!

Massage

Massage is a relaxing activity during the afternoon program. Types of massage include hand massages, neck massages, and foot massages.

Hand Massage

I used to think that giving a hand massage simply involved washing the residents’ hands and applying lotion to them. Then I met Lorna Reid, a nurse with ACCORD Hospice in Scotland who showed me the art of hand massage and gave me a copy of Comforting Touch in Dementia and End of Life Care: Take My Hand, by Barbara Goldschmidt and Niamh van Meines. The book gives the background of touch therapy and provides many stories of residents with dementia who have benefited from touch. The step-by-step instructions for what the authors describe as a “comforting touch session” can only be summarized here; the book is worth buying.

The session begins with hand washing for both the person giving the massage and the person receiving it. I’m using the term massage, but I do not mean to imply that this activity can be offered only by a licensed massage therapist. Goldschmidt and van Meines (2012) suggest that at least 30 minutes should be allocated for each hand rub, but that timeframe would be difficult if not impossible for the Namaste Carer with 10 to 12 people in the room. A more practical application is to teach this activity to volunteers, families, and other team members. When Lorna demonstrated the hand rub to me and other care partners, we could feel the effects after a 10-minute demonstration. The sequence recommended by Goldschmidt and van Meines is as follows, with every gesture repeated three times:

- Be present and in the moment, then apply soft, fluttering strokes that say “hello.”

- Rub the shoulder and elbow with circular motions.

- Place the person’s hand with the palm facing down on your hand and make small circular strokes over the knuckles.

- Using your thumb, make gliding strokes over the top of the hand.

- Turn the hand over and rub the inside of the palm.

- Hold the hand and stroke down the fingers.

- Stroke the fingertips.

- Say goodbye by repeating the soft, fluttering strokes that began the massage.

Neck Massage

Some people may enjoy receiving a gentle shoulder and neck massage. No gloves are worn when offering a neck massage. This massage can be applied over clothing or directly on the skin. People with advanced dementia often have fragile skin on their necks and shoulders, so the massage is very gentle, and the Namaste Carer is constantly assessing the person for signs of discomfort.

Foot Washing and Massage

In the Namaste Care room, foot washing may be a part of the afternoon activities. Historically and culturally, foot washing is often viewed as a humbling task and a loving gesture. As explained in Chapter 2, the origins of hospice care date back hundreds of years ago to the Knights of the Round Table, with stories describing how knights retired from battle would care for the oldest knights at the end of their life, providing clean linens, offering warm soup, and washing the feet of the people in their care. In Christianity, there are also descriptions of Jesus washing the feet of the disciples. The act of washing feet continues to be a symbol of honor and care in the Namaste Care room.

Foot massages are given using a careful and gentle touch, especially when rubbing over bony areas. Gloves are worn when offering foot massages. The person’s feet are soaked one foot at a time in a basin with warm water and antibacterial soap, gently washed and dried, and massaged with lotion up to the knee. This procedure not only feels good, but also provides an opportunity for the Namaste Carer to assess the integrity of the person’s skin and the condition of the toenails. Nursing staff are immediately informed of any questionable areas on the legs or feet. Toenails must be trimmed by a podiatrist in the United States, so except for cleaning them using an emery board and moisturizing them, the toenails are left alone. The reaction of people to this very basic and loving experience is often an expression of complete bliss.

Music Activities

As emphasized, music is an important part of the Namaste Care program that helps to create an appropriate mood for the time of day or the activity. Like the start of the morning program, calming music is also played when people enter the afternoon program, and upbeat music is played to wake everyone up before the next meal, in this case dinner. As mentioned in the discussion of exercise, dancing exercises are a good way to get people moving. Motivating music to help engage people in exercise can include big-band music or songs that are often played before a sporting event.

Evidence shows that the last part of the brain to deteriorate in dementia is linked to musical memories. Don’t be surprised when a person who cannot speak in understandable sentences can sing the words of a song. Although most people in Namaste Care do not attend scheduled activity programs because they are no longer able to participate in them, music programs are the exception. When a music program or performance is scheduled, everyone is taken to the activity, as music continues to be meaningful to people with advanced dementia.

Music that was popular during people’s lives can be very pleasant to hear as the Namaste Carer is offering beverages or snacks. Namaste Care activities may also involve other items that make pleasantly stimulating sounds. The quiet tinkling of a small wind chime, the beating of soft-sounding drums, and the sounds of triangles and hand bells are a few examples of enjoyable musical sounds. Some of the items can be played or manipulated by the person as an individual activity, providing an excellent way to exercise the hands and fingers. Another stimulating instrument is the singing bowl. It can produce a variety of sounds and is very interesting to use. The bowls make a humming sound that resonates throughout the room. Music boxes are also fun, and many people will recognize their songs and the tinkling sound they produce. My mother had a music box that had been her mother’s, and I remember the unique sound and look of the music box from when I was a child.

In an ideal world, care homes would be able to employ the services of a licensed music therapist. The work of these professionals is very effective in hospice and palliative care programs. Licensed music therapists can provide consulting services to help find appropriate music for people in the Namaste Care program. Good resources include the American Music Therapy Association (www.musictherapy.org) in the United States and the World Federation of Music Therapy (https://www.wfmt.info/) internationally. Music for Dementia is another helpful web site (https://musicfordementia.org.uk/).

Nourishment

Nourishing and pleasurable foods, such as lollipops and juice, are again offered in the afternoon. The Namaste Carer might make the afternoon special by also offering a treat like soft ice cream or pudding. Some residents take pleasure in munching on a soft cookie that is easy to swallow. Residents with advanced dementia usually retain a sweet tooth, so anything sweet is often enjoyable and provides much-needed calories. Fruit muffins are a treat in Australia. Lena Priniotaki, a Namaste Carer in Greece, told me that the people she cares for like yogurt with honey or with fresh or dried fruits. She also offers people homemade halva, a sweet kind of pudding with semolina. Beverages are offered on a continuous basis during the afternoon program, the same as in the morning.

Religion and Spirituality

Meeting the religious needs of people with advanced dementia is challenging because when they are taken to a religious service they often fall asleep. The Namaste Carer must know the religious history of the person to make these activities personal and appropriate. This assessment can be challenging because a person’s family may say that their loved one is not religious, which may be true of the resident’s adult life. However, the person’s history may include being raised in a certain religion, and that faith may be remembered and become important again as the dementia progresses.

Religious items to hold, songs, hymns, and chants can all help people with dementia reconnect with their spirituality or religion. For the first Namaste program in Bennington, Vermont, I created bags for religious supplies with a printed symbol of the person’s religion on each bag. As an example, one bag had a cross (Protestantism), another a crucifix (Catholicism), and another the Star of David (Judaism). The bags included religious pictures and items specific to the person’s religion. For example, for Christian residents, items included a cross or crucifix, a rosary, the Bible, and religious statues (e.g., the Blessed Mary). For Jewish residents, potential items included a mezuzah, menorah, and yarmulke. These examples represent the common religions practiced by residents of that particular care home, but the bags and their contents can be customized to honor any person’s religion. When the Namaste Carer and other staff members are unfamiliar with a person’s religion, the family may be enlisted for help in learning about that person’s faith and can be asked to provide items that would be meaningful to their loved one.

Religious practitioners are invited to come into the Namaste Care room to offer individual visits, and people are given the opportunity to engage in their faith traditions as much as possible. For example, if the person is a practicing Christian and can safely swallow, Holy Communion can be offered. People are given the option to attend religious services and ceremonies and to honor the Sabbath or other days of worship in their religion. For instance, church services may be offered on Sunday for Protestants and Catholics. For people who are Jewish, religious activities can be provided to honor Shabbat (Sabbath), which begins at sunset on Friday and ends at sunset on Saturday.

When planning a religious activity, care must be taken to make the room reflect the particular faith. Music, scents, and short readings can help people with severe Alzheimer’s disease understand that a religious activity is taking place. Whenever possible, coordinate these activities with a visit from religious practitioners (e.g., clergy members) or volunteers from that religion.

Involving the Family

Families often visit in the afternoon and should be politely cautioned that entering the room with a boisterous greeting and loud voice does not fit with the serenity of the Namaste Care program. A bit of sensitivity education helps care partners and families understand that they must enter the Namaste Care room as a breeze softly flutters in a window, changing the feel of a room but not adding to or detracting from the atmosphere. One room has a sign reading, “Namaste Care in Session; Enter Gently”!

Visits are sometimes difficult for family members when their loved one is unable to speak and may not recognize them. Some family members, especially spouses, visit almost every day; their lives may feel very empty with their partner living apart from them. Sometimes, a person’s spouse or significant other may not know what to do during the visit. Something simple, such as giving the person a hand cream for massaging their loved one’s hand, can help connect the couple once again. Reconnecting with the person who has dementia is equally important for other family relationships. In England, a daughter was in tears when her mother began to massage her hand (Simard, 2012b). Another person loved having his wife and daughter hold a lollipop for him to suck on, because he could no longer hold it himself.

For some family members, visiting during the Namaste Care program gives them an opportunity for socialization with the Namaste Carers and other families. Namaste Carers become like close extended family when they show support to family members struggling with painful emotions. For example, Namaste Carers can help to alleviate the loneliness of spouses or significant others by welcoming them into the Namaste Care environment. Being involved in Namaste Care is also comforting for adult children, who may feel guilty that they had to move a parent to a care home and have a continued sense of responsibility to help care for that parent. When they are able to do something for their loved one, such as brushing their mother’s hair or giving dad his favorite ice cream, children feel as if they can still provide special care to their parents.

With some assistance from Namaste Carers, family members can offer most meaningful activities, such as brushing hair and giving hand massages. We also encourage families to bring items from home that may elicit a response from their loved one. Families are Namaste Care guests, so offering them something to eat or drink when offering food and beverages to their loved one is an appropriate and courteous gesture. Families should also be informed that they can take their loved ones out of the room, perhaps to attend a music program or for a walk. My grandson, Justin, was about 6 or 7 years old when he visited his 103-year-old great-grandmother. Justin still treasures that memory; he was so proud that he was allowed to push her in the wheelchair. Namaste Carers ensure that both the residents and families are in a safe situation when leaving the Namaste Care room. Many of the spouses are frail themselves and cannot manage wheelchairs without some assistance.

Families appreciate seeing how Namaste Carers take such good care of the person they love. Family members often say that they visit for longer periods of time and that their visits are more enjoyable in the Namaste Care room. The Namaste Care afternoon program was an essential part of Matthew’s day and was equally important for his wife, Celia.

MATTHEW’S STORY

After lunch, Matthew was toileted and either put to bed or taken back to the Namaste Care room. When entering the afternoon program, Matthew was again warmly greeted by the Namaste Carer. Many days he was not placed in a lounge chair because his wife was coming to visit, and she wanted to be able to wheel his chair outside or be alone with him. To prepare him for Celia’s visit, Matthew was told that she would be arriving, and a scarf with the scent of Celia’s favorite perfume was placed around his neck. Matthew loved music by Frank Sinatra and Dean Martin, so he often wore earphones with those songs playing.

Celia arrived to hugs from care partners. They told her about Matthew’s morning and all the positives they could communicate. As Matthew’s condition deteriorated, it was important for Celia to hear that he was well cared for and happy. Like so many spouses and partners, Celia had cared for Matthew for many years, and it was difficult to turn his care over to others and to live without him. The Namaste Carers were very affectionate toward Celia, who got a healthy dose of hugs whenever she visited.

During the afternoon, Matthew had range-of-motion exercises. He seemed to enjoy a variety of musical sounds, such as a rain stick, bells, or wind chimes. He especially liked chocolate pudding. His eyes glowed when the pudding arrived, and either Celia or the Namaste Carer fed him.

Sometimes Namaste Carers just held Matthew’s hand and looked into his eyes. Matthew was loved, and with his peaceful demeanor, we believe he felt it. The Namaste Care programming ended before the evening meal. Again, Matthew was toileted and taken to the dining room, then readied for bed. Music that he especially liked was played on a bedside tape deck. He was well cared for throughout the day, receiving good nursing care and meaningful activities that enhanced his life.

CHAPTER 5

The Namaste Care Individual Program

Endings matter, not just for the person but, perhaps even more, for the ones left behind.

ATUL GAWANDE

In 2007, Russell Hilliard attended a presentation I gave about the Namaste Care™ group program at a conference where he was also speaking. At that time, Hilliard was the Executive Director of Seasons Hospice and Palliative Care (now called AccentCare). We had dinner together that evening, and he seemed quite interested in learning about Namaste Care.

Russell was concerned that his team members, especially the nursing team, struggled with providing care to people with dementia, who at times resisted care, often had limited communication skills, and lived in another place and time within their minds. He was also concerned that the hospice volunteers were often reluctant to visit people with advanced dementia. He believed that the prevalence of people with advanced dementia would increase, and he wanted to ensure that the best possible care was provided to them and their care partners.

Russell contacted me a few days after our dinner and said, “Can you put Namaste Care in a bag and bring it to the bedside?” I admitted that I didn’t have a clue how to do this, but that I would love to try to adapt the Namaste Care program for people receiving hospice care. As a result of this conversation, the Namaste Care Group Program was adapted to become the Namaste Care Individual Program for the first time.

ELEMENTS OF NAMASTE HOSPICE CARE

In the United States, all Medicare-certified hospices must provide the same services, which makes it a challenge for hospice organizations to find an edge, a special niche in a crowded marketplace. Why should a family choose one hospice over another when all organizations provide the same care?

Seasons Hospice and Palliative Care had been providing music therapy from board-certified music therapists, a service that was not reimbursed by Medicare and not offered by most hospices. The management staff believed that offering Namaste Care to people with dementia would be yet another differentiator that would set them apart and make them a desirable organization for end-of-life care. This organization’s implementation of Namaste Care would help to outline a framework for the Namaste Care Individual Program. Thanks to the wonderful work of Seasons Hospice and Palliative Care, and all that I learned in my many years as their Namaste Care consultant, I have helped hospices around the world implement Namaste Care.

The Namaste Care Hospice Champion

To maintain the integrity of the Namaste Care program, Seasons Hospice and Palliative Care recognized the value of appointing someone to be responsible for supplies and monitoring the program. In every location where Namaste Care was offered, an individual would be appointed as the Namaste Care Champion. Sometimes this person would be the supervisor of the nursing assistants, whereas in other sites a social worker or music therapist could assume this role. The Champion’s professional discipline is less important than his or her commitment to maintaining the integrity of the program and encouraging team members to help it flourish. Any organization offering Namaste Care to individuals should consider appointing at least one Namaste Care Champion.

Namaste Care Hospice Volunteers

Volunteers are an important part of any hospice organization, but the regulations and customs governing their roles vary throughout the world. In the United States, as of this writing, hospice regulations state that volunteers must provide day-to-day administrative and/or direct patient care services, and that volunteer hours must equal at least 5% of the total patient care hours of all paid hospice employees and contract staff. These volunteers must be used in defined roles and under the supervision of a designated hospice employee, depending on the laws and regulations of the state and locale.

In other countries, the work of volunteers is not governed by the country’s regulations. Of course, volunteers should be vetted to ensure they do not have any communicable diseases or a criminal record. In hospice organizations that offer Namaste Care, volunteers receive Namaste Care education prior to contact with the people receiving hospice care.

Namaste Care Education

Namaste Care education is a part of the orientation for all staff and volunteers. This education is also offered as a review to all team members and volunteers once a year, giving a chance to pursue questions from their experience of actually providing Namaste Care. Education courses are most often provided in a group setting so care partners can share examples from the past year’s experiences. Staff and volunteers often enjoy telling and hearing stories about the people they have served.

Most team members who are in hospice organizations have some experience working with people who have dementia, and most have had some dementia education. Nonetheless, reviewing the fundamentals of Alzheimer’s disease is valuable for all staff and volunteers. Namaste Care education gives instructions on providing Namaste Care in a calm environment and explains the loving-touch approach to all interactions. When the basics have been covered, the education becomes personalized depending on people’s roles in the organization. In the United States, all hospices have social workers, chaplains, a volunteer coordinator, and marketing or community outreach staff.

Education is key to the success of any new program, including Namaste Care. The education outline in this chapter (Figure 5.1) was developed for hospice organizations that provide Namaste Care in the United States and generally meets U.S. government regulations.

Figure 5.1. Education outline for Namaste Care in the United States. This outline should be altered as needed to meet the rules and regulations for each organization and each state or country.

Namaste Care Supplies

Each hospice care partner is given a large bag containing Namaste Care supplies. The bag is made of material that can be easily cleaned, and it travels with the care partner to wherever Namaste Care is offered. The following supplies are recommended for the bag, plus any items that reflect the person’s culture and preferences:

- Latex gloves

- Moisturizer, such as Pond’s face moisturizer (United States), Nivea face cream (Europe), or moisturizer containing Old Spice aftershave

- Q-tips or plastic spoons for taking small amounts of the moisturizing cream out of the jar (disposable for infection control)

- Combs or soft brushes
- Soft tissue
- Hand sanitizer
- Lavender linen spray
- Hand lotions, both scented and unscented

- Small medication cups to hold the lotion as a way of avoiding cross-contamination

- Safety razors, shaving cream, and Old Spice aftershave lotion

- Emery boards

- Fingernail clippers (to be used only by a person qualified to cut fingernails)

- Seasonal items and aromas (e.g., lilacs and daffodils in the spring; roses in the summer; fall gourds, pumpkins, and the scent of cinnamon for fall and winter). Seasonal items will differ depending on the country, state, or region.

- A notebook containing prayers, sayings, and pictures related to a person’s religion or spiritual beliefs. All items are placed in a plastic protector that is easy to wipe clean.

- Fun objects (e.g., bubble wands, puppets, clown noses)

- Devices for playing music (e.g., cell phone for streaming music, small CD player and music CDs)

- Lollipops for moisturizing the mouth and a list of people who can safely be given one

- Pictures showing items from the past and well-known buildings or sites within the city or country (should be enclosed in a plastic protector for infection control)

To ensure an individualized Namaste Care experience for each person, a special assessment form can be created to determine the person’s preferences. This assessment can ask about many aspects of Namaste Care, including any particular scents the person likes, such as preferred scents for a face cream or aftershave lotion. Identify other scents that are especially pleasing to the person and that evoke pleasant memories. For example, a person may enjoy a scent related to a hobby, such as the smell of wood chips or cooking spices. It is also important to determine any scents a person does not like or any allergies to a particular scent or product. The assessment form should also record what name the person likes to be called, favorite foods and beverages, and the person’s likes and dislikes regarding personal care. For instance, one person may love a scalp massage, whereas another person may not enjoy this type of touch.

Usually, a team member or specific discipline, such as social work in the United States, will complete a Social History or Life Story that is expanded to include information needed for providing Namaste Care. If the person is unable to answer the questions, the family will be asked to complete the form. When the person is in a care home, care partners and other staff might be more familiar with the resident’s current likes and dislikes, which can change during the disease course.

Creating the Environment

It is not Namaste Care unless the environment supports the program. Every interaction can affect the environment, starting the moment team members enter the room where the individual program takes place.

Elements of the Namaste Care Environment

Team members or volunteers from the hospice or organization providing care should always knock on the door before entering a person’s room. They learn to hesitate (stop, look, and listen) before walking into the room. Namaste Care usually takes place in a quiet, peaceful environment, so stopping to assess the current atmosphere helps team members and volunteers plan any changes that should be made to create a suitably peaceful setting. Are the lights on? Is the television on? If so, what program is playing? How many people are in the room? These are a few observations that team members make before entering the room.

In some care homes, the television is on a channel that is interesting to care partners, but not to the people who live in the room. Care partners must be reminded that the television program should be enjoyed by the residents. If the resident has a roommate, that person must be acknowledged, and team members should explain that they are visiting the roommate’s neighbor. If the lights need to be dimmed and the television turned off, the roommate must agree to these changes or any other alterations to the environment.

To provide privacy in a shared room, a privacy curtain can be pulled around the person’s bed or living area to create a cocoon. Music is often played during the individual program; watch the person’s facial expressions and response to assess whether the sounds in the room are enjoyable. The scent of lavender is usually sprayed on the privacy curtain or on some fabric in the room (e.g., the person’s blanket) to provide a pleasant smell. It is rare that a person does not respond positively to this scent, but the first time that lavender is used, it is sprayed on a tissue and placed under the person’s nose to gauge the individual’s reaction. Other scents can also be used depending on the person’s preferences. For instance, a person who loves the ocean may be comforted by a scent from the sea; a person who cooked may enjoy the scent of cinnamon or other spices.

Every situation is a bit different, and person-centered care means that the person’s needs come before the program or how anything is usually done. The person’s culture and preferences should always be considered when creating the Namaste Care environment. For example, hospice aides have shared that some people prefer the room to be bright rather than having the lights dimmed, so they open the drapes to let natural light come into the room. Such decisions are left to the individual team member or volunteer. Team members know the purpose of the program and can decide what changes might be made to create the most appropriate environment for the person receiving Namaste Care.

Along with the physical environment, soothing, person-centered activities create the loving atmosphere of Namaste Care. Activities similar to those in the Namaste Care Group Program are provided, such as hand massages and hair care, music activities, and offering foods and beverages. Hospice care partners usually provide personal care during their visits and use the Namaste Care approach. People with dementia are often frightened by taking a shower, so many times a bed bath is offered by the care partner. Supplies for a bed bath are gathered before the care partner enters the room so there is no need to leave the person. A hair dryer can be used to warm the sheets and towels. Even in warm climates, feeling the warmth of towels and bed linens is very comforting.

All these elements of the Namaste Care environment help people and their families through their end-of-life journey, as shown in the story of Mrs. Smith.

MRS. SMITH

Mrs. Smith was an 88-year-old widow with severe Alzheimer’s disease. She lived in a special care unit of a nursing home. Her family visited on the weekends, but they had difficulty knowing what to do during these visits because Mrs. Smith did not recognize them and rarely spoke. The hospice aides completed the Lifestyle Preference Assessment with the assistance of the family and the nursing home staff, and then developed a person-centered plan of care by recognizing what was important to Mrs. Smith before her illness. They discovered that she enjoyed gardening and loved to dance. She took great pride in her appearance, having visited the beauty shop every week. Her plan of care included providing her with a spa experience.

When the hospice aide entered the room, she introduced herself and told Mrs. Smith that she was going to give her a spa treatment. To set the scene for this activity, the aide dimmed the lights and played soothing music. The bed linens and privacy curtain were sprayed with lavender scent.

The nursing home staff indicated that Mrs. Smith resisted any attempt to shower her; it usually took two care partners, and she screamed throughout the shower. For this reason, a shower was replaced with a soothing bed bath as part of her spa day. Mrs. Smith’s agitation and need for psychotropic medications decreased when the care partners replaced showers with bed baths.

Mrs. Smith’s hair was brushed with loving strokes and fastened with a favorite hair clip. She was told that she would receive a facial. First, a warm, wet facecloth was applied to her face. Next, Pond’s face moisturizer, her favorite face cream when she was a young woman, was applied to her face. Mrs. Smith’s hands were soaked in warm water so that her nails could be groomed.

When the spa treatment was completed, Mrs. Smith was dressed and told that she would be going to a dance. Favorite dance music suggested by the music therapist was played while the hospice aide took her arms and did range-of-motion exercises to the music. Mrs. Smith was almost nonverbal; however, the aide reported that she laughed and one day even said, “I love to dance.” Nourishment and special treats were also part of the person-centered care that she received. Mrs. Smith had no problems with swallowing, and she loved coffee ice cream; this information was communicated to staff and family members.

Mrs. Smith’s family members were invited to participate in Namaste Care by helping to brush her hair and massage her arms with lotion. This person-centered approach to care made visits the highlight of the week for her family members, who wanted to treasure the last days they would have with their loved one. Hospice volunteers are not allowed to feed people, but they could brush Mrs. Smith’s hair and massage her arms and hands with lotion; they also brought flowers and plants for her to look at and touch. Namaste Care created a better quality of life for Mrs. Smith during her final days.

Decorating for Comfort

Namaste Care is built on honoring the person in every way possible, and providing an attractive and comforting environment for the Namaste Care program is an important way of doing that. The residents’ rooms, where they spend many hours, should also be as comfortable as possible. Rooms should be personalized with pictures and other familiar items; be sure to place these items where residents can see them. One enterprising care home painted the ceilings in everyone’s rooms with clouds and birds. Another care home repainted each room as they had the funds available.

Care homes can find creative ways to finance environmental changes. As an example, one care home with limited funds for redecorating asked organizations in their community and private benefactors to adopt a room. In addition to seeking monetary donations, other organizations have recruited volunteers to help paint rooms and similar efforts.

PROVIDING NAMASTE CARE IN THE HOME

When Namaste Care is brought to the person’s home, family care partners are able to rest and share their care responsibilities with others during that time (Yous, Ploeg, Kaasalainen, & McAiney, 2022). Hospice staff and volunteers try to create a soothing and peaceful atmosphere in the person’s home, incorporating the elements of the Namaste Care environment, such as music, scents, calming lighting, and loving touch. These elements had a large impact on Sam, a home care patient with cancer.

SAM

When caring for Sam, the hospice aide reported that his home was always full of family members, and that cable news was usually playing on the television throughout her time with him. His attitude was usually, “Let’s get this bath over with”; he rarely spoke as she provided personal care. The aide had just attended a Namaste Care educational program and decided to try the techniques with Sam. She asked the family whether she could have some time alone with him, suggesting that maybe they could take some time for themselves and go for a walk. They seemed to be relieved and left the house eagerly.

The aide asked Sam what type of music he liked, and he said classical. After asking permission to turn off the television, she found some Bocelli arias to play on her cell phone and then sprayed the room with the scent of pine rather than lavender, because Sam had indicated he loved hiking in the forest. As she began giving him a bed bath, she asked him to tell her a favorite story about when he was younger.

The aide saw Sam relax as he talked about his life on the farm and how he believed he was his mother’s favorite. As she was bathing him, the aide felt that for the first time he seemed to enjoy himself. She then changed the bed linens, sprinkled baby powder inside his pillow, and offered him a drink. When she was finished providing care, Sam gave the aide a huge smile and told her that he felt as if he were in a five-star hotel. When his wife returned, he said, “I’m as clean as the day you married me, and I feel cured.”

The hospice aide communicated to the volunteers that Sam spent his childhood on a farm and loved growing things. When they came to visit, they brought flowers gathered from their own gardens as well as fresh fruits and vegetables. Knowing about Sam helped the hospice care partners identify topics that he enjoyed, making their visits were more fruitful.

Providing Namaste Care in the home requires special considerations, as it involves being invited into a person’s intimate living space and interacting closely with any family members present. Cultural awareness and sensitivity are important factors to consider, as well as how to tailor the Namaste Care program to each individual. Education can be provided to both staff and family members to guide implementation of Namaste Care in a person’s home and in local communities. The efforts of St. Joseph’s Hospice in London provide one example of how to implement Namaste Care in these settings.

St. Joseph’s Hospice set up a service to provide Namaste Care in the homes of people with dementia living in East London. A charity called Hope for Home (see Chapter 1) worked closely with the hospice organization and provided the fund for the first 2 years of the initiative. During their visits, the hospice volunteers showed family members and care home staff how to use the Namaste Care approach so that they could continue providing Namaste Care when the volunteer was not there.

St. Joseph’s Hospice provides Namaste Care to people living with dementia in three East London boroughs: Newham, Tower Hamlets, and City & Hackney. These areas include ethnically and culturally diverse communities that experience high rates of poverty. Since Namaste Care is in essence a person-centered approach, an important part of the program involves finding out about a person’s cultural background and interests. Learning about these factors enables the volunteer to plan and tailor Namaste Care sessions to the person’s cultural needs and personality, whether through music, food, scents, or pictures.

One of the challenges in serving a multi-ethnic community is the range of languages spoken. More than 100 different languages are spoken in East London, for example, which can lead to communication barriers between hospice team members and the people receiving Namaste Care. Bilingual or multilingual people living with dementia often revert to their first language as their dementia progresses and may lose the ability to speak languages they learned later in life. Even if they do not speak the same language, Namaste Care volunteers can engage with the person by using the loving-touch approach to all interactions and by maintaining a calm environment.

NAMASTE CARE IN INPATIENT SETTINGS

The Namaste Care program can be brought to individual patients in a hospice inpatient center (IPC). In some of these IPCs, patients have many diagnoses, and Namaste Care is brought to all patients at their bedside. Supplies are kept in a home-like piece of furniture, such as a rolling cart or trolley that can be wheeled to patients’ rooms. Most AccentCare IPCs are units within a hospital, and all patients’ rooms have televisions that can be turned to a channel with soft music and beautiful pictures. Although this feature has eliminated the need for a separate music player (e.g., CD player) in every room, there is always one available in the cart, along with a variety of music.

Staff may offer supplies for families to use from the cart. In one instance, a woman was actively dying, and her daughter was trying to keep her mother’s mouth moistened with a sponge swab. When the daughter mentioned how much her mother liked sweets, she was given a lollipop from the cart and instructed to soak it in water and then to moisten her mother’s lips with the lollipop rather than the swab. After her mother died, the daughter described comforting memories of her mother sucking on the lollipop with a bit of a smile during her last moments. Although the daughter had felt helpless to stop this disease from taking her mother, she was able to do something to make the end-of-life journey a bit easier for them both.

In addition to the items listed earlier for the Namaste Care bag, the cart can also be used to carry items designed to bring comfort to patients who are actively dying. Religious items could include religious texts (e.g., Bible, Quran) and meaningful items for that person’s faith, such as a cross; prayer beads (e.g., rosary, japamala); yarmulke; or Star of David. The cart may also contain a booklet with information about the end of life, including signs that a person is actively dying and suggestions for relieving uncomfortable symptoms of impending death.

Visiting people as they are dying is an important part of the Namaste Care Individual Program. Connection and compassion are very powerful and healing for people in IPCs. For Daniel, caring words and touch helped bring moments of peace to the dying process.

DANIEL

Daniel was a 68-year-old patient in the IPC who was admitted for pain associated with prostate cancer that had metastasized to his bones. When I met him, his pain was controlled, but he was agitated; his body moved almost constantly. He did not speak to me but did nod his head when I asked permission to turn off the television and visit with him. I began to create the Namaste Care environment, lowering the lights, playing soft music, and spraying his bedding with the scent of lavender. He kept watching me with his eyes wide open but did not say anything. I began to talk to him with loving words, telling him that he was a very special man and how loved he was. As I spoke, I gently stroked his head and face. Gradually, the twitching movements ceased, and after about 10 minutes, he fell asleep. His care partner told me Daniel slept peacefully for an hour, the most he had slept since admission.

St. Cuthbert’s Hospice is one organization with lessons to share about implementing Namaste Care in inpatient settings. Located in the United Kingdom, St. Cuthbert’s Hospice brought Namaste Care to people in the hospital. Before the visits were suspended due to COVID-19 precautions, Namaste Care Lead Nicola Kendall and hospice volunteers would bring their supplies to the hospital. They originally visited on Wednesdays, but they found that physicians were doing rounds and other professionals were working with the patients, so they decided Saturday was the best day to visit.

Initially, they wanted the nursing staff to fill out referral forms identifying patients to visit. That plan did not work, as the nurses were too busy and had enough required paperwork; they did not want yet another form to fill out! So Nicola and her volunteers started going to the ward and asking the nurses whom they should visit. More information on this program can be found in the book Namaste Care for People Living with Advanced Dementia (Kendall, 2019).

SPECIAL CONSIDERATIONS FOR END-OF-LIFE NAMASTE CARE

Namaste Care recognizes that eliminating pain and discomfort must be a top priority at the end of a person’s life. Maintaining quality of life is the goal during a person’s final days. A palliative approach to care includes both medical interventions, such as pain and symptom management, and the more psychosocial aspects of care, such as the way residents are bathed and assisted with ADLs, how they are dressed and seated in chairs, and whether they have the opportunity to engage in meaningful activities. When residents are comfortable, care partners feel better too. Families are more comfortable visiting their loved ones and are less anxious when they leave them.

Holistic and Nonmedical Treatments

Many holistic approaches can enhance well-being and provide comfort at the end of life. These treatments are offered to people on an individual basis. Some nonmedical treatments to consider incorporating into Namaste Care include massage therapy, Reiki, acupuncture, aromatherapy, and music.

Massage therapy can be used to treat pain and discomfort in muscles and joints. The gentle, relaxing strokes may offer comfort to the person (Holliday-Welsh, Gessert, & Renier, 2009). Reiki, a form of energy healing, is also gaining acceptance within the medical profession as a complementary treatment. Reiki involves using the hands to transfer energy and promote relaxation. This technique is not a religion and has shown no harmful effects. Reiki treatments have been used in hospitals to accelerate healing, relieve pain, lower anxiety, decrease sleep problems, and increase appetites.

Acupuncture is another way of providing relief from pain. This ancient treatment is now accepted by traditional medicine as a way to alleviate pain in rehabilitation and acute care settings (Berman et al., 2004).

Aromatherapy and the use of essential oils—especially lavender, geranium, and marjoram—may have calming effects on people with Alzheimer’s disease who experience anxiety. However, these oils should not be used on any person with allergies. Aromatherapy is a natural, noninvasive treatment. The aroma of lavender in the Namaste Care room appears to create a calming environment. Many times, a person who continually paces is drawn into the Namaste Care room by the pleasing scent of lavender. Aromatherapy diffusers are available in activity catalogs and in many stores and online sites that sell essential oils.

Music is another way to decrease anxiety and lessen pain. As emphasized throughout the book, Namaste Care uses music as a way to soothe and engage people with dementia. Playing soft, tranquil music and nature sounds in a person’s room may help lower anxiety and reduce discomfort at the end of life.

Team members are always exploring ways to help people feel comfortable and are encouraged to try new, holistic approaches to alleviate pain and discomfort when visiting people individually. There should be no safety concerns with a treatment, and all approaches should be documented in the care plan. In addition, ensure that any treatments provided are within the team member’s scope of practice.

In my work, I have witnessed the positive effects of holistic treatments for people at the end of life. At a nursing home in Massachusetts, the director of nursing successfully used the scent of lavender to calm residents. She made lavender patches (lavender mixed with olive oil) from 2×2-inch pieces of gauze, which were then taped to the upper body of some residents who were prone to falls. The results were encouraging. She noted that in 1 month prior to using the patches, there were 19 falls. In the month after implementing the use of lavender patches, the number of falls declined by more than half. Only one resident out of the nine people who fell was using the lavender patches. Additionally, the director noticed a general improvement in mood and other behavioral health symptoms for these residents. One particular resident had been given several different medications to treat psychiatric symptoms, such as delusions, but she was too sensitive to their effects to continue taking any of them. When the lavender patch was tried, she became much calmer. None of the residents experienced any skin irritation from the oil. Hospice volunteers could make these patches for use by team members visiting people in their homes.

The AccentCare IPC located in Baltimore, Maryland, also successfully implemented a number of holistic, nonmedical approaches for hospice patients. I had the pleasure of meeting the medical director, Harold Bob, who often used Reiki, music, and aromatherapy along with conventional medicine. He was trained as a master in both Western and Japanese Reiki. The first time I made rounds with Bob, I was amazed at how he used his hands to assess and comfort the patients. He was a perfect role model for Namaste Care. This IPC trained several staff members to offer Reiki to patients.

Bob also led the way in changing attitudes and language related to end-of-life care. These efforts included revising the language used in the daily patient reports. Care partners began using the word transition in place of words like die, dying, or dead. For example, the daily reports revised the phrasing “will die on unit” to “will transition in our care.” This new statement more accurately reflects the hospice way of caring for people and ensuring a peaceful, comfortable passing at the end of their lives.

After-Death Care

In all settings—care homes, the person’s home, or the IPC—after-death care is a part of Namaste Care. As taught in Namaste Care education, different cultures and groups may have different responses to death and practice varied after-death rituals. As just one example, many nurses in Ireland say this Irish blessing when a person dies:

May the road rise up to meet you. May the wind be always at your back. May the sun shine warm upon your face; the rains fall soft upon your fields, and until we meet again may God hold you in the palm of His hand.

After-death care involves ways of handling and caring for the person’s body, which will vary by country and by care organization. In some IPCs, a quilt and flag are available to cover the body. Lorna Reid, now the education lead at Prince and Princess of Wales Hospice, sent me this lovely description of how many nurses prepare the body for viewing in Scotland:

In the absence of specific guidance from families, the nurses and care staff do actually have rituals that we routinely carry out. We create some order in the physical environment: tidy up, remove all the medical equipment, attend to the light in the room so it has a soothing quality. Then we carry out a final act of care for the person who has died—carefully bathing and re-dressing the body. We smooth out the fingers and position the body with the hands resting peacefully and naturally on the abdomen. As we provide this care, we are mostly quiet but say out loud what we are doing as we are doing it—as we did when the person was alive. We re-make the bed and lay a blanket (colorful usually) over the bottom two thirds of the body with the hands on the outside. We smooth out a pillow. We pick a single flower and lay it on the pillow. We thank the person for their life. AND we say goodbye. Then the family comes back in. They could be involved in all of the above, but most decide not to.

If hospice staff are present at the death, they accompany the person’s body as far as possible (e.g., to the funeral vehicle). Some hospitals in the United States require the body to be taken through the basement, so the hospice team members and any family walking alongside the body will stop at the door to the basement or morgue area.

The Namaste Care program offered at AccentCare (formerly Seasons Hospice) provides a meaningful experience for all the people served and their families. It has enriched the lives of people receiving hospice care, especially those with Alzheimer’s disease, as well as the lives of those who care for and about them, whether professionals, friends, or families. I sometimes think of my work with organizations like this one as sowing seeds, and it is a delight to see what blooms. A chance meeting with Russell Hilliard added many new blooms to the Namaste Care garden by leading to the growth of the Namaste Care Individual Program. Although the program had not yet been developed, Matthew received the individual program during his final days.

MATTHEW’S STORY

At the end of his life, Matthew could no longer attend the Namaste Care Group Program, as it was too difficult and uncomfortable for him to be taken out of bed. Team members brought Namaste Care to him and made the environment as comforting as possible when they were providing care. Throughout most of the day, a CD player played music his wife said he enjoyed. Mary Longtin, the Namaste Carer, would come to Matthew’s room before the afternoon group program started and give him gentle hand massages. Beverages were at the bedside, and all team members would stop as they were passing his room to offer him a sip of his favorite juice. Taking Namaste Care to Matthew’s room was so natural for everyone, as he was loved by the staff at the Vermont Veterans’ Home in Bennington, Vermont. He slept a great deal of the time but seemed to sense when someone was in his room. His eyes would open, and the beautiful smile that we all loved would appear on his face. Although nothing could be done to stop the dying process, Namaste Care helped make it a very gentle leave taking.

CHAPTER 6

The Physical Setting

True beauty is born through our actions and aspirations and in the kindness we offer to others.

ALEK WEK

The Namaste Care Group Program can take place in a variety of settings. The program can be offered in a dedicated room or in a room that is also used for other purposes, such as dining or activities. The program can also be offered in a Namaste Care neighborhood, a section of a care home where people with advanced dementia live. If the room is part of a Namaste Care neighborhood, the entire area should resemble a home.

Wherever the Namaste Care program is located, the space needs to look and feel comfortable to support the principle of providing activities in a calm environment. The environment should also reflect the culture and preferences of the Namaste Care participants, which will vary based on location.

DESIGNING A SPACE FOR NAMASTE CARE

The Namaste Care Group Program can be offered anywhere with space to gather people so that no one is isolated, as being in the presence of others is a key component of the group program. Whatever space is allocated, whether one room or part of a larger room, giving the area a different appearance from the rest of the care home helps the people in the program, their families, and team members know that they are in a special place. Making the space look different also helps with marketing Namaste Care as a new program.

Some care homes, such as a large organization with many homes, might also have a budget for hiring an interior designer to help create the ambiance of the room. Be sure this design professional understands how people with advanced dementia see their world, addresses any safety issues, and knows the regulations for healthcare settings in your country.

Many years ago, I had the good fortune to work with professional designers for Arden Courts Memory Care Community, a division of ProMedica Senior Care, in the United States. The designers had healthcare experience and yet took the time to learn about Namaste Care, a new program for the company, to design an ideal space for the daily programming.

ARDEN COURTS

Tasked with creating a space for the Namaste Care program, the designers visited one of the first programs implemented in an Arden Courts community. They wanted to see firsthand what changes needed to be made to one of the living rooms to support and enhance the program. The result was a Namaste Care room that was practical, containing the supplies and equipment we needed, yet beautiful, with program supplies stored in a buffet that would fit in any home.

The design team made a number of changes to the living room to make the space look like home and to help create the Namaste Care environment. As part of their work, they added an electric fireplace that provided a special homey touch to the living room where Namaste Care would take place.

Team members always need to be able to see their residents, so the wall separating the living room from the corridor was designed as a half-wall. Although this half-wall was perfect for a good view of the residents, when Namaste Care was taking place, anyone walking in the corridor caused a distraction for the program. To address this problem, the designers purchased a shade with beautiful nature pictures painted on one side that was pulled down on top of the half wall and eliminated the distractions caused by people walking past the room. Next, a drape was hung at the large open entrance to the room. When Namaste Care was taking place, the drape was pulled down, and it was tied back when the program was not in session. This cozy arrangement set the tone for the environment and sustained the aroma of the essential oils in the room.

At the conclusion of the Namaste Care program, the shade was pulled up, supplies were stored, and the space once again became the living room.

Not all care homes will be able to use professional designers as Arden Courts did. Most of the time, there is no money for these services, and team members become the design experts. Even when working with a limited budget, remarkable changes can be made in institutional settings by being resourceful and imaginative. Actually, working on very little money is a specialty of mine, and I am often dubbed the Queen of Walmart décor! I also find “treasures” in used furniture stores.

When we opened the first Namaste Care program in the Vermont Veterans’ Home, an older nursing home, the administrator gave us a small budget for a large room. The efforts of the team made it possible to create a comforting and welcoming Namaste Care environment with limited funds. When team members saw what we were trying to do to make the room look like home, they donated furniture and other items. Thanks to these donations, we did not have to buy furniture and had money to purchase items that were on our “dream list,” including a small refrigerator and a room diffusor. I believe the excitement generated by these preparations makes the program a success before it even opens.

Keep in mind that Namaste Care is not about the room itself, but about what transpires there. Creating the Namaste Care environment is not about having a huge decorating budget—it is about making a given space as pretty and homey as possible. Creativity and teamwork often help to make this happen. One excellent resource is the care home’s maintenance staff, who can help with renovations and repairs as well as provide advice on safety regulations. For example, in the United States, maintenance staff can help to ensure compliance with fire safety regulations, such as those regarding fire ratings for fabrics and rules for a safe egress from the room. The story of Australia’s first Namaste Care program is a great example of how ingenuity is key in designing the Namaste Care environment.

NAMASTE CARE IN SYDNEY, AUSTRALIA

I was speaking about Namaste Care at a conference for the School of Nursing at the University of Western Sydney, Australia. Several months before the conference, I was on a call with the organizers discussing details of my time there. One of the people on the planning committee mentioned how nice it would be to actually have a Namaste Care program for people to see. Without thinking, I blurted out that if they could find a care home that was interested in starting a Namaste Care program after reading my book, I could have one up in 4 days. Of course, I never thought that would happen, but I underestimated the School of Nursing’s research director Esther Chang, a person who knows how to get things done! The next thing I knew, a care home was ready to implement the first Namaste Care program in Australia, and before I knew it, I was in Sydney making Namaste Care happen in 4 days.

In this care home, there was no unused space for a dedicated Namaste Care room. The only space big enough for the program was a section of one dining room that jutted out at a strange angle from the main dining area and was used just for feeding a few residents. I was assured that the feeding could take place in a small room near the nurses’ station and that we could use that space. This area was located by the entrance to the dining room, so the distraction of having everyone pass by was a problem.

The night before we opened, the very clever and talented administrator bought some material and sewed a curtain to separate this small area from the main dining room. On the day of the “grand opening” of Namaste Care, the maintenance worker hung a cable and attached the curtain with hooks so that it could be pulled over to the side when we brought residents in for the program. When closed, it would shield the room from distractions. I found a couple of tall plants that I placed at the opening to make it look like you were entering the front door. In 1 hour, we transformed the space by covering old geri-chairs found in the basement with pretty floral sheets, hanging pictures on the wall, placing live plants on the windowsills, and putting little vases of fresh flowers on small tables scattered around the room. The program opened that morning to looks of disbelief from staff and families, and we had ourselves a Namaste Care room.

Most spaces in a care home present some challenges that the team must work together to address when creating the Namaste Care environment, whether it is turning an empty resident room into a homey Namaste Care room or making a large area look warm and cozy. Never underestimate the team’s ability to find a solution and determine a suitable space for the program.

I will never forget how the administrators at one nursing home in Ohio created a place for Namaste Care. The first day I was there, I toured every floor of the care home with the management team to find a place for the program. I can always find space, but this nursing home was a challenge, and I could not find any room that was suitable for Namaste Care.

The executive director scheduled a meeting with his management team to discuss the implementation process, and finding a space for the program was the first challenge to solve. I asked everyone to tell me if there was a room that was not used most of the day. The team was silent at first, except for some nervous laughter that trickled through the room. One brave manager finally said that the only room that was not well used was the conference room, the one that we were in right then. An executive director would never give up a conference room, or so I thought. He paused for a minute and then said, “You are right.” Within a month, the large conference table was in storage. Management meetings were held in the dining room, and Namaste Care was changing the lives of many residents.

CREATING A DEDICATED NAMASTE CARE ROOM

When a room is dedicated just for the Namaste Care program, it should be secured when not in use. That way, the room can be decorated with an array of antique objects, real plants, and other items that add warmth and character without any concerns that the space will be disturbed or pose any hazard to people with dementia in the care home. If the room is not closed off to wandering residents when it is unattended, people with dementia might decide to eat a plant or to “shop” by taking items from the room.

Designing a calm, attractive environment can be a fun experience for team members. It also can provide an opportunity for fundraising. Some benefactors prefer to donate money rather than giving their time and labor, such as paying for the services of a professional painter. As one option, families could donate funds to renovate a Namaste Care room dedicated in memory of their loved one with dementia.

Decorating the Walls

The first step is deciding on the color of the room. Paint and a wallpaper border can help in creating the homey, soothing environment that is Namaste Care. Unless the room has recently been painted, repainting it a different color will give it a fresh, new look. I have found that soft, pastel colors work best in peach, green, or blue, with a matching wallpaper border if possible, preferably one with a floral print. Wallpaper was very popular in the 1950s, so it can help evoke memories of home in older adults. Although covering an entire wall may be impractical, a wallpaper border is a cost-effective way to change the look of a room and is easy to install. I recommend hanging the border low enough for people in wheelchairs to see it and high enough so they do not pick at it. One care home wallpapered a room to resemble an apple orchard. Unfortunately, the residents quickly ruined the wallpaper by trying to pick the apples!

If painting the room would be difficult for the maintenance staff, recruit volunteers to paint and hang a border, or consider seeking donations to help with these renovations. Decorating the Namaste Care room is a perfect project for a service organization. Volunteers like to make a visible difference, and this task is a one-weekend project with immediate results.

“ADOPTING” A ROOM TO PAINT

My first job was in a very old nursing home that desperately needed to be redecorated but had no budget for these changes. Throughout the year, I visited various service clubs; military organizations, such as the Veterans of Foreign Wars; and churches to ask if they would “adopt” a room, buy paint, and have their members paint the room. By the end of that year, the entire nursing home was repainted. The work was done on weekends when volunteers had more time and less was going on in the nursing home. Small plaques thanking the various organizations were located outside each room.

These painting jobs also ended up being the “activity” of the day for people in the care home, as the residents crowded around the door opening to watch the painters. The activity person encouraged the residents to talk about their memories of painting. This activity can be a good reminiscence activity for residents who enjoyed decorating and renovating their own homes or for people who had jobs building and renovating houses. My father was a painter when he was a young man and worked with his father, who built houses. When my father retired, he once again painted and wallpapered homes. He would have enjoyed watching others painting, and I’m sure Emile Simard would have had advice for the volunteers!

Furnishing and Decorating the Space

Once the Namaste Care room is painted, the next steps are to furnish it and add homey touches. Here are some easy and affordable options:

- Look in storage closets and basements of the care home for pictures and furniture left behind when someone moved.

- Visit a thrift store (e.g., Goodwill in the United States) for inexpensive, gently used furnishings, such as tables, cabinets, lamps, and other interesting pieces of furniture that will help to make the room look like a living room. Older pieces can be a wonderful reminder of furniture that people have owned in the past.

- Be on the lookout for buffets, as they are good storage pieces.

- Used furniture can be made more presentable with furniture polish that covers scratches. Use doilies, scarfs, and old items on tables to help hide any noticeable imperfections, or just ignore them, as they are a sign that the piece has had life.

- Check out garage or yard sales, called jumble sales in the United Kingdom, for furniture and old items, such as sewing baskets, pieces of quilts that can be framed, and pieces of embroidery and lace.

- Purchase pictures and artwork at discount stores in the clearance-sales section.

- Use easy-to-install wall stickers and art that have quotes.

- Ask for donations of plants, and recruit a volunteer gardener to keep them healthy. The local garden club may help fill the room with live plants and flowers.

- Hang wind chimes and brightly colored sun catchers in the windows.

- Install a bird feeder outside the window.

- Ask families for pictures of the people in the program and arrange them around the room. When the person is no longer in the program, the pictures are returned to the family.

- Place a portable waterfall near a wall; they are inexpensive and make a lovely sound.

When Namaste Care is introduced to all team members, they are encouraged to help with making the room look like home. For example, when we were decorating the Namaste Care room at the Vermont Veterans’ Home, the administrator allowed any team member to buy an item for the room as long as it was under $25 and they had a receipt. Many team members donated pictures, quilts, and antiques just because they wanted to be a part of the new Namaste Care program. Staff often donate “gems” they find in their own basement or attic. They also might find something at a neighborhood yard sale.

Old, used furniture pieces are perfect additions that help create a lived-in look; in some cases, they are more inviting than expensive new purchases. In one care home, a rehabilitation aide discovered a buffet while she was browsing in a local used furniture store. The administrator gave her money to purchase it, and the maintenance worker picked it up in his truck and brought it to the nursing home. After work, the aide polished and covered most of the scratches. This buffet looked quite presentable, and the aide was very proud of what she had done to make the Namaste Care room look like home. The drawers of this buffet were kept open to show old lace tablecloths, colorful shawls, and other sensory items used for programming, and the piece was a beautiful addition to the Namaste Care room.

The simple placement of furniture and accessories can make a difference in how the room looks. If you are a Namaste Carer, stand at the door to the room and try to imagine seeing the space for the first time. Does the room look as comfortable and homey as possible? If not, rearrange the room so that it does.

The room should have a few chairs for families and visitors. A Namaste Care room that has a circle of chairs tends to look institutional, so the seating is best arranged to resemble a living room or other space in the home. For example, a rocking chair can be placed beside a floor lamp and covered with a throw blanket and a needlepoint pillow, creating a small, comfortable nook that is inviting to families. Perhaps a lounge chair can be placed in front of a television playing a nature video. Two chairs can be angled to face a window so that people can see outside. In a Michigan nursing home, a flock of swans lived in a pond outside the Namaste Care room. When I visited, the mama swan was proudly sitting on her nest waiting for the eggs to hatch, much to the delight of the residents peering through the window. Bird feeders, such as hummingbird feeders that can be stuck to the window, can be located outside within view. If the door is open even a few inches and the space looks inviting, people who are wandering might come in and sit for a while.

Storing supplies in the room or space used for Namaste Care reduces the time needed to set up the room every day. If an empty room is being used for the program, install shelves in the closet for supplies and add a nice-looking lock to secure the space. Use a rod in the closet to hang large bags for storing individual quilts and blankets. Supplies can also be stored in a piece of furniture that is part of the décor. In many European countries, freestanding wardrobes are used for storage; these can also be secured. One care home has attractive, open storage units that make the quilts and blankets easy to find. With this type of arrangement, however, the room needs to be secured so that these items are not taken.

If the room can be secured, a kitchen area is a wonderful feature to add. A sink, small refrigerator, and microwave are practical and help in creating the feeling of home. Hanging old kitchen utensils on the wall, placing old-fashioned magnets on the refrigerator, using colorful dish towels, hanging aprons on hooks, and having a cookie jar and bread box on the counter could help people recall kitchens from their past. In one care home, the maintenance worker found a kitchen cabinet in the clearance section of a building-supply store. He installed the counter in a corner of the room, and we placed a microwave and cookie jar on it. A small refrigerator stood beside the counter. For very little expense, this area became a kitchenette where food and beverages for the daily program were stored.

When designing and decorating the Namaste Care room, be sure to address any safety issues and adhere to regulations. Before all electrical items are used, the maintenance department should check them for safety problems. In the United States, all electrical items must have a sticker with the date of the inspection and approval. Follow your country’s rules and regulations regarding appliances.

It is amazing what can be done with great spirit and little money. One of the first Namaste Care programs I implemented in the United States was located in an empty two-person room. The transformation was remarkable.

TRANSFORMING A RESIDENT ROOM

The resident room was painted the same color and had the same window treatments as all the other rooms in the nursing home. We wanted to create a different look for the Namaste Care program, without making any changes that would cause problems if the room needed to be restored back to a resident room. We removed all the furniture and then painted the walls a soft yellow. When we hung a flowered border, the room sprang to life.

Team members went on a hunting expedition in storage closets and in the basement of the care home. They found some small tables and paintings that had been donated to the care home by the families of residents who had died. An inexpensive plant rack was painted a soft green and was placed in one corner; it did not take up much space and added some color to the room. Families and residents donated their extra plants to the room, and we purchased African violets for the windowsill. These flowers are easy to care for and bloom most of the time. A bird feeder was attached to the outside window, providing an enjoyable view for the residents.

As part of our search for furnishings, we discovered an old stereo system, the kind that looked like a piece of furniture that was popular in the 1970s. It no longer worked and was not practical to fix, but we removed the stereo equipment so we could store things inside. When cleaned and polished, this piece of furniture became very useful. The top of this converted stereo was covered with a lace cloth and decorated with pictures, a basket of lollipops, and a plant, so that it looked completely transformed.

There were two call bells mounted on the wall, which made the room look more institutional, but in case the space was to be used as a resident room again, we were asked not to remove them. An inexpensive patchwork quilt was purchased, sprayed with fire-retardant spray, and hung over these fixtures with double-sided tape. The result was an inexpensive yet attractive way to hide the call-bell system. Lounge chairs for the residents were not in the budget, but some unused geri-chairs were found in the basement. To hide the institutional look of these chairs, their trays were removed, and they were covered with quilts and decorated with pillows placed on the seats. Art for the walls and other interesting knickknacks came from the marketing department, which donated some items from the stash of decorating pieces used for model and respite rooms.

A private bathroom with a tub, toilet, and sink was located in the room. Because no one was going to take a bath during Namaste Care, we hung a shower curtain to obscure the shelves we placed in the bathtub for storing supplies for the program. Residents would not be toileted in the bathroom, so additional shelves were placed over the toilet. Attractive towels and a few pictures of old-fashioned bathrooms completed this practical yet pretty space.

In just a few weeks and with little cost, this unused room was transformed into a perfect Namaste Care room. It was fun to see the expressions of staff and family members when they saw the transformation. If they only knew how we did it! Very quickly, the room filled, and more people than could be accommodated were identified as needing Namaste Care. A larger space was found so that the program could grow, and the room was easily restored back to a resident room. In the United States, all resident rooms must be certified. However, using this space on a temporary basis meant that the beds did not have to be decertified, so this desirable room with its new paint and border was quickly filled.

A DUAL-PURPOSE ROOM

In some care homes, the Namaste Care room is used for other purposes, most often as the dining room. In this case, it is not feasible to decorate the room with certain furnishings, such as the live plants, blankets on chairs, and antique items found in a dedicated Namaste Care room. It would be too difficult to secure and store these items, especially in a dementia care neighborhood, where people may wander in and claim the items as their own. Although dual-purpose rooms are not the best option for the program and can be more challenging to decorate, they can still be transformed to look inviting when Namaste Care is taking place. With a little imagination, a dual-purpose room can be made to look warm and friendly. With lowered lighting, beautiful music playing, and the scent of lavender in the room, this space can be very appropriate for the Namaste Care program.

If the setting is a dining room, most of the tables and chairs are pushed to the perimeter of the room after the meal. One or two tables are left in the center of the room and covered with a pretty tablecloth. Lounge chairs are moved to the center of the room to provide comfortable seating for people who can easily be transferred from a wheelchair and can sit safely in them. A secured storage area is necessary if supplies are kept in the room; if this is not possible, a rolling trolley or cart with all the supplies needed for the day can be used when the program is in progress and taken out of the room when Namaste Care programming ends. Silk plants and flowers, which can be easily stored, may be used instead of live plants.

In some care homes, family rooms are used during the day for the Namaste Care program, and in the evening, they become a cozy place for family visits. Many of these rooms have a closet or piece of furniture where supplies can be stored. The lounge chairs used for the program are perfect for families to sit on during their visits in the evening. In one U.S. care home where I was a consultant, families had to visit in a room that was sparsely furnished and looked institutional. Refurbishing this room was not at the top of anyone’s to-do list. After we redecorated this family room as part of implementing Namaste Care, it was interesting to see the difference that the look and feel of the room made on families. They visited more often and stayed longer when the room looked more like home. Family members said that the room’s attractive new look made them forget they were in a nursing home.

Creating a dual-purpose Namaste Care room only requires creativity, which team members often have in abundance. The staff at one care home in Norton, Massachusetts, showed this creative spirit when designing a dual-purpose Namaste Care room.

The building in question was the oldest purpose-built nursing home in the state of Massachusetts, and it did not have space for a dedicated Namaste Care room. The wing we selected for the Namaste Care program had just one all-purpose room where residents ate meals and special activities took place, like Sunday Mass and music programs. The maintenance staff repainted the room a soft blue and hung a wallpaper border of pastel flowers. Window blinds that were constantly getting bent and broken by residents were replaced with soft, white-lace curtains. We hung shelves on the walls, high enough so that residents could not reach them, and filled them with old-fashioned knickknacks. The room already had a television set and a DVD player that we could use for nature videos.

A discarded television cabinet became a storage unit for supplies, and the administrator approved the purchase of six comfortable lounge chairs for the program. The lounge chairs were pushed close to the walls to make room for the dining tables when Namaste Care was not in session. Residents and families enjoyed sitting in these chairs when they were visiting.

Preparing the room for Namaste Care became an art for Namaste Carer Margaret Silva. After breakfast and lunch, the room was emptied of residents, and housekeeping quickly cleaned the floors. Margaret pushed some of the dining tables to the corners of the room, and others became part of the program and were covered with tablecloths and items such as a tea set and framed pictures of the residents. One day when I was visiting the care home, Margaret had placed fresh lilacs in vases on the tables; another day she sprinkled silk rose petals on them. Before the program officially began, Margaret gathered supplies, switched on a diffuser with lavender-scented oil, played calming music, and dimmed the lights. The room took on a new personality. After the space had been transformed, Margaret opened the door to welcome residents. I don’t think any of them recognized that they were going back into the dining room!

NAMASTE CARE NEIGHBORHOODS

In many countries, the population of people with advanced dementia in care homes, assisted living communities, and memory care communities has grown in recent years. As a result, some care homes have developed a whole Namaste Care neighborhood for residents with advanced dementia where all team members support a palliative care approach. Palliative care is often confused with hospice care. The difference between the two is that for the most part, hospice provides end-of-life services, whereas palliative care is focused on comfort throughout the disease trajectory. In the United States, for example, hospice organizations care for people who have 6 months or less to live, as outlined by eligibility requirements for the Medicare hospice benefit. Palliative care focuses on relief from pain and suffering for people with a serious illness and provides support for their families over the course of the disease.

Creating a Namaste Care neighborhood can be a good business decision because it provides a unique service that can be marketed to families. From a business perspective, offering a Namaste Care neighborhood as part of a care home or as the entire home has the potential to increase census and can help to keep the beds full in a competitive marketplace. Whether the care community is for profit or nonprofit, the reality of the long-term care business in the United States and in most other countries is that the organization must make money or at least break even.

In the United States, special programs like a Namaste Care neighborhood can help to attract more people who are paying privately. Medicaid, a government program that provides financial assistance to Americans who do not have the funds to pay for nursing home care, does not pay as much per day to the care home as a private-pay resident. By attracting more private-pay residents, the Namaste Care program can help generate essential revenue for the care home to remain viable, although it may take a year to completely fill the space.

Before the organization decides to become a Namaste Care home or create a Namaste Care neighborhood, an evaluation of the current dementia program is a good first step. Assess the physical and cognitive status of the people currently in the dementia program, as well as the status of residents who live in other parts of the care home. Are there enough people with advanced dementia to make this dedicated area viable? Consider the number of people who might be good candidates for the Namaste Care program and ways to include as many participants as possible. For example, offering two programs, one for people with moderate dementia and one for those with advanced dementia, can help position your care home as an organization that provides excellent and unique dementia services.

To ensure the best quality of care, a Namaste Care neighborhood can have its own dedicated team members who are selected for their desire to specialize in working with people who have advanced dementia. Team members who choose to work in special neighborhoods are often extremely dedicated to their work and proud that they are part of a unique program. This was certainly true for the Namaste Care neighborhood located in the Fountainview Center for Alzheimer’s Disease in Atlanta, Georgia.

FOUNTAINVIEW CENTER FOR ALZHEIMER’S DISEASE

To provide Namaste Care to the large number of people with advanced dementia, management at Fountainview Center for Alzheimer’s Disease decided to convert the entire 40-bed pavilion into a Namaste Care environment where two or three care partners would provide daily programming. The education and training director provided in-service training to all departments to describe the program and gain their cooperation in upholding a peaceful, quiet atmosphere while programming was taking place. Restricting traffic into the pavilion for a 2-hour period in the morning and afternoon was necessary.

The first pavilion was so successful that another pavilion later initiated its own Namaste Care morning session for 6–12 people. When I visited Fountainview, I could see the pride that team members had in their program. They were bubbling with excitement as they showed me a closet filled with colorful, flower-decked hats. I thought that someone had raided Queen Elizabeth’s closet! The team members explained that something special was needed to spice up the weekends, so they scheduled a tea party once a month that is popular with many women. Special care was given to applying their makeup, and they wore their best dresses. Every resident who chose to also had a hat to wear for the tea. China cups were used, and families were invited to participate in the festivities.

During the summer, the staff would arrange a “beach day.” Residents could wiggle their toes around in a basin of sand that was brought in for the activity, bat a beach ball around, and suck on flavorful popsicles. The team received permission from the administrator to design T-shirts with Namaste and a butterfly printed on the front. This amazing team was very proud of the palliative care they offered.

The calmness in a Namaste Care neighborhood is striking to many team members, who are used to the sometimes-chaotic atmosphere within a dementia care unit. When most residents are engaged in meaningful activities, they are happier and more at peace. One of the best compliments I have heard was from a technician fixing the elevator security system for a dementia special care neighborhood. This care home offered “The Club” for people with moderate dementia and Namaste Care for those with advanced dementia. The neighborhood was calm, with a few people quietly wandering in the corridors; most residents were involved in activities except for a few people who chose not to participate in either program. This technician commented to the maintenance manager, “I thought you said this was a dementia floor?” He worked with security systems for dementia programs every day and had never experienced the quiet and peace of this neighborhood.

The first Namaste Care program started as a dedicated neighborhood in the Vermont Veterans’ Home (United States). This neighborhood was created on a wing with several empty rooms that each had two or three beds. At the end of the wing was a large room that could be used for the daily program. The Vermont Veterans’ Home is an example of how a dedicated Namaste Care neighborhood can be successful in many ways.

VERMONT VETERANS’ HOME

The Namaste Care neighborhood was part of a 17-bed wing divided by a central nurses’ station. The neighborhood had the typical “double-loaded” corridor (rooms on either side) found in many U.S. nursing homes. The Namaste Care room was located at the end of the corridor. The neighborhood had one private room; the remaining rooms were for double occupancy. The social worker’s office was located in the neighborhood, as was a utility room and shower area with toilets. There was no budget for decorating the neighborhood, so costs had to be kept low.

The institutional look of the corridor was changed by painting the walls a soft taupe and hanging a wallpaper border. Walls were transformed with artwork from the local community. The care home initiated a Gifts of Love program to encourage local artists to donate original works of art for the neighborhood. A letter describing the program and asking for donations was sent to previous benefactors, artists, and anyone else who might contribute to funding Namaste Care. The letter was also published in the local newspaper as a public-relations initiative. Several artists donated work; other benefactors donated money, which enabled the care home to purchase an adjustable double bed, bed linens, and carpeting for the private room that eventually became the Reagan Room (see below) for people who were actively dying.

Mary Longtin, the original Namaste Carer and an artist, helped to arrange pictures and other decorative items on the walls, including the Chinese symbols for peace and tranquility, a small quilt, and pictures of the local landscape. The corridor was transformed from an institutional-looking space to one that was warm and peaceful—no easy feat with a very limited budget. When the corridor was finished, Namaste Care team members found ways to disguise laundry carts and other institutional-looking items, as everyone took great pride in how the neighborhood looked like home.

Regulations required that residents’ names be posted outside their room, so team members purchased bulletin boards in a soft taupe fabric that had ribbons to hold memorabilia as well as the person’s name and room number. These bulletin boards were sprayed with flame retardant to comply with fire regulations. Families were asked to provide copies (not originals) of pictures for the bulletin board as well as greeting cards or items that reflected the person’s interests. One family tucked their loved one’s favorite recipe cards on her bulletin board. All the residents in the home were veterans or spouses of veterans, so each bulletin board had an insignia showing the military branch under which the person or the person’s spouse had served. Small American flags were tucked in the ribbons. Using bulletin boards that were beautiful yet practical helped make the long corridor look less institutional.

The entrance doors to this neighborhood were fire doors that had to be kept closed (but not secured). They were painted a soft blue and stenciled with the word Welcome. Soft music was played in the corridor throughout the day. One team member was designated the lead care partner and assumed responsibility for turning on the music and ensuring that one care partner was always in the neighborhood. Doors were only opened during meals, as the dining room was located outside of the neighborhood. The only time residents ate in their rooms was if they were sick.

An institutional-looking shower room was located in the neighborhood. It too received a makeover. We painted the walls blue, then found pretty printed curtains for the windows and the shower. Much to our surprise and delight, they were fire rated and acceptable for care homes. We placed silk flowers on the windowsills and hung pictures of old-fashioned bathrooms on the walls. A CD player was available to play music, and a diffuser made the room smell of lavender.

The entire Namaste Care neighborhood was kept as quiet as possible, with no institutional sounds (Calkins, 2003). No overhead paging was allowed in the neighborhood, and the use of a television was discouraged. All call bells were changed to sound like chimes, and beautiful music was played throughout the day. Making the neighborhood more comfortable and homey and reducing the noise level helped to create a calming atmosphere for the team members as well as the people living there. With all the changes in this neighborhood, anyone coming through the doors knew immediately that they were entering a special place.

Namaste Care happens through team members’ dedication and willingness to go the extra mile in providing top-quality, compassionate care to people with advanced dementia. The care partners in this neighborhood shared responsibilities and worked collaboratively to uphold Namaste Care principles. As an example, staff working the 7 a.m. to 3 p.m. shift decided that a good way to wake people up for breakfast was to play music or bird sounds in the corridors.

Families also played a role in making this neighborhood a success. Families were always given the option to move their loved ones to the Namaste Care neighborhood, so they felt in control. The result was happier families with rarely a complaint to the social workers. Family support groups emerged: a formal group that met once a month and an informal group. Members of the informal group gave social workers permission to share their names and phone numbers with families struggling to decide on whether to move their loved one to the Namaste Care neighborhood so that they could provide advice and support.

The newly created team rose to the challenge of launching this groundbreaking neighborhood and approach to care. As a result, the Namaste Care neighborhood was exceedingly popular and created great value for the Vermont Veterans’ Home. From a business standpoint, it increased census by freeing beds in the dementia care neighborhood, a secured area for residents with mild and moderate memory loss that had a waiting list of people who wanted to live there. With permission from their families, residents with advanced dementia were moved to the newly created Namaste Care neighborhood, creating more room in the secured neighborhood. Within a month, the census increased significantly, making the Namaste Care neighborhood a good financial decision. The care home also experienced an increase in referrals from discharge planners and hospice staff working with families who had loved ones with advanced dementia.

Care home regulators loved the Namaste Care neighborhood. They even asked permission to recommend that other care homes in the state visit the Vermont Veterans’ Home to learn how to improve care for people with advanced dementia. The neighborhood also generated positive publicity for the care home through conference presentations and articles published in professional journals.

ADDITIONAL DEDICATED NAMASTE CARE SPACES

Additional spaces that can be dedicated to Namaste Care include family rooms and a Reagan Room, a space designed specifically for residents who are actively dying. The Vermont Veterans’ Home used both of these spaces, paving the way for them to be incorporated in other care homes and communities as part of the Namaste Care program.

Family Room

Having a room for families to use is a valuable feature of a Namaste Care neighborhood. In the Vermont Veterans’ Home, the social worker’s office was in the Namaste Care neighborhood, and she readily agreed to move so that a family room could be created. A donation paid for a sleep sofa for family members who wanted to stay overnight. Another family donated antique furniture that made the room look like an old-fashioned living room. A small table and chairs were added so that neighborhood staff could also use the room for care plan meetings. Family conferences could be held in the room, as well as private visits with social workers and clergy members. Some families also just used this room to take a break from sitting with their family member.

The Reagan Room

The Reagan Room is a private room that is designed to support residents and their families during the dying process. This space was created by the staff at Vermont Veterans’ Home after they observed that families had little opportunity for privacy when a resident was actively dying and lived in a double room. The administrator and board of directors approved the only private room in the Namaste Care neighborhood for use as a private, peaceful place for residents and their families during the dying process. This space was named the Reagan Room in memory of former U.S. president Ronald Reagan, who had the courage to announce that he had Alzheimer’s disease. Families were so grateful to have this private room to use during such a difficult time that they began to give donations to the Reagan Room. Many families also asked their friends and family members to give donations in lieu of flowers in memory of their loved one. The room was an instant success in many ways.

Families whose loved one was actively dying were given the choice of staying in the resident’s room or moving to the Reagan Room. Families in the Namaste Care neighborhood were given priority, but the room was also offered to families whose loved one lived anywhere in the care home. Most families chose to have their loved one moved because of the privacy the room afforded. We worried that the Reagan Room would be viewed as the death room. However, this was not the case, perhaps because we decorated it to look beautiful and because of the positive reactions from team members and families.

The room was painted a soft peach, carpeting was laid, and blinds were hung on the large window. Donations made it possible to purchase a dresser and a motorized double bed. This allowed care partners to give care easily because the bed could be repositioned. What we did not anticipate was how the double bed allowed spouses to lie next to their loved ones as they were dying. Beautiful bedding was purchased for the bed. Two quilted bedspreads (so that one could be laundered while the other was being used), matching pillow shams, and peach-colored sheets and pillowcases helped to create a very homelike bedroom.

If you work in a nursing home, you know that lost laundry is an unfortunate reality. Team members cringed when we showed them the beautiful linens we purchased for the room. Everyone was anticipating that these linens would be laundered to shreds or disappear. That was never a problem because we went directly to the laundry department and asked for help. We explained the purpose of the Reagan Room and invited staff to visit. We showed the laundry staff the bedding we had purchased and asked them how we could keep track of the items and keep them looking beautiful. The laundry staff handstitched a personalized nametag and gave us a special laundry bag for the items in this room. They were proud of their contribution to the Reagan Room. We also met with the housekeeping staff. After we explained the room’s purpose and our need to keep it ready at a moment’s notice, the housekeepers took special pride in polishing the furniture and keeping the room clean and in good order.

As soon as someone was moved, we transferred the person’s mementos, pictures, and various other personal items to the Reagan Room. A box of items, such as silk flowers and pictures for the bureau, was gathered to keep the room looking personal even when it was unoccupied. A reclining lounge chair ensured that family members could be comfortable if they were in the room or wanted to sleep there. The Reagan Room had its own bathroom, which was painted and decorated with a pretty wallpaper border, matching shower curtains, towels, face cloths, a bathmat, and a wastebasket. Pictures were hung, and this formerly boring beige room was transformed to an attractive bathroom for families. Medical supplies were hidden from sight behind the shower curtain, so it was also a practical space.

The Reagan Room continues to provide a beautiful place for families of residents who are dying. The double bed was one of the best decisions made in designing the Reagan Room, as it has made such a difference for families spending their last hours with a loved one. Joan, the wife of one resident, shared the story of her last night together with her husband.

JOAN

Joan received a telephone call one evening from the charge nurse. Her husband, Jeffery, was not doing well, and she might like to come visit him. She dressed quickly and drove to the care home. Joan had been living with her husband’s Alzheimer’s disease for many years, and although she recognized that he was declining, she just didn’t believe he was dying. He had a cold, but surely, he would recover as he had so many times in the past.

When she arrived at the care home and saw Jeffery, she realized that his condition was more serious than she originally thought. The charge nurse took her to the family room and told her that she may want to call the rest of the family, as Jeffery’s condition was quite serious. Joan was offered the use of the Reagan Room. She broke down in tears and struggled with the decision to move Jeffery. With gentle prodding from the charge nurse, she agreed to try it. The nurse assured her that Jeffery could always be moved back to his room if he got better. Joan says it was the best decision she could have made.

For the remainder of the night, she lay next to Jeffery and held him in her arms. She talked to him about their life together and recalled memories from the day they met. As the sun was rising, she finished her story, and Jeffery slipped away. Joan felt that somehow Jeffery heard her, and the closeness offered by the double bed made the passing an intimate experience.

Team members have commented on how a special aura permeates the Reagan Room. Since the Reagan Room opened, it has created a haven for hundreds of families saying goodbye to their loved ones. Matthew was one of the residents who peacefully passed in the Reagan Room.

MATTHEW’S STORY

Matthew was one of the first people to be moved to the Namaste Care neighborhood. Although it was a difficult decision for his wife, Celia, who had become close with the staff members in Matthew’s current neighborhood, she was grateful that Matthew’s new room would be close to the Namaste Care room. He was living in the Namaste Care neighborhood when his physical condition worsened.

Nursing identified signs that Matthew was actively dying 4 days before his death. He was difficult to rouse and very lethargic, and he developed a fever. The charge nurse called the physician, who agreed that comfort care should be continued and recommended that the fever be treated with acetaminophen. The charge nurse and neighborhood director approached Celia to determine whether she would feel comfortable moving Matthew to the Reagan Room. Celia had witnessed the changes in the room and loved what had been created, so she agreed to have her husband moved. Matthew’s pictures and other mementos were also moved to the room.

Celia selected music to fill the room, and she decided that Matthew would enjoy having the drapes opened because he always enjoyed seeing the beauty of nature. Namaste Care team members checked on Matthew several times each hour to assess his condition, take care of his personal needs, and ensure that Celia had food and beverages available and was comfortable being alone with Matthew.

Matthew was kept comfortable with morphine and appeared peaceful. His children arrived shortly after he was moved to the Reagan Room, so Celia always had at least one family member with her. The family was offered food, beverages, and overnight accommodations in the care home’s guest room. When Matthew seemed to rally on the third day, his children returned to their homes in Massachusetts. As soon as they left, his condition worsened; it appeared that Matthew did not want to die with his children present.

The Namaste Care team members then stepped in to provide support and comfort for Celia. She was never alone during the last hours of Matthew’s life. In the privacy of the Reagan Room, Celia was able to face the death of her beloved husband with a few chosen staff members, who were with her until Matthew took his last breath.

CHAPTER 7

Planning and Implementing Namaste Care

Begin with the end in mind.

STEPHEN COVEY

From his book The 7 Habits of Highly Effective People, Stephen Covey’s second habit, “Begin with the end in mind,” is a perfect way to begin thinking about implementing your Namaste Care™ program—by considering the ultimate goal. Perhaps the “end” you have in mind is for your organization to specialize in dementia care and become the care home of choice for families and other referral sources looking for dementia care. If this is your vision, the plan for implementing Namaste Care should be more comprehensive because all care home staff need to be involved in the process and feel like they are a part of these efforts. Or, perhaps you need a “quick fix” after experiencing problems in your care home that a Namaste Care program may help to resolve. If that is true, the implementation process may need to be accelerated. Once you have decided what the “end” will be, a plan for the implementation process can be developed. I describe this as a vision plan.

The first step in developing a vision plan for Namaste Care is to decide on the scope of your program. Will it be a morning or afternoon group program, or both? Will you decide to have a Namaste Care neighborhood where the program is offered, or will the group program be offered throughout the entire care home? You may decide that all care should be offered using an unhurried, loving-touch approach in a calm, peaceful environment. When this decision has been made, the timeline for implementation can be developed. This timeline should be flexible so that even during the planning stage and implementation process, Namaste Care is a joy, not just another project.

The implementation of Namaste Care begins with presenting the program to the main decision maker, usually the administrator or owner of your care home. This is assuming that you, the reader, are not the decision maker. I will refer to the decision maker in the care home as the administrator. Request a meeting with the administrator so that you will be undisturbed and preferably away from a telephone and computer. Offer this book or information from it before the meeting or as part of your presentation, and personalize the program to your care home. Use examples of the people whose lives were changed by Namaste Care to show how this approach helps improve quality of life for residents and staff. These personal touches will help to make the program real, not a theoretical concept.

One team member had worked in a care home that offered Namaste Care, and she believed that the program should be implemented in the care home where she was now working. She convinced the administrator and the director of nursing to start the program by sharing how Namaste Care impacted one resident at her former place of employment. The story of the rabbi, once a well-known and respected member of the local religious community, had a powerful effect on her audience.

THE RABBI

His eyes were haunting. Most days, the rabbi was in a lounge chair or in bed with a feeding tube that provided continuous nutrition. He had severe dementia, could not ambulate, and needed total care. Except for his strong eye contact, he was nonverbal. The rabbi clearly received good care for his physical needs, with clean clothes and his yarmulke firmly in place. Still, he looked so lonely and frail to the staff.

The rabbi rarely left his room because of his feeding tube. Often, a soap opera or The Jerry Springer Show was playing on television—not programs he would have ever watched, and clearly a team member’s choice. He did not participate in any activities other than occasional religious services, when he was wheeled into the room with his feeding-tube equipment. Someone had to sit with him so that no one would touch the feeding tube. The activity department visited the rabbi several times each week and read passages from religious books. Nurses took care of his physical needs, and occasionally he had a visitor. That left hours alone. What kind of quality of life was this for a man who had dedicated his life to others?

The director of nursing was troubled that the rabbi was so isolated, so she approached his physician, who agreed that he could go for periods of time without the feeding tube. Nursing staff then made sure he was taken to the Namaste Care program. In the Namaste Care room, the rabbi was no longer alone, and he could benefit from activities that were still meaningful to him. Namaste Carers talked to him, helping him to recall his life’s work that was so important to him and the community he served. He listened to favorite religious music and chants that had been a major source of pleasure in his life. Music was played for him on headphones or played for everyone in the Namaste Care room. The rabbi became a part of the Namaste Care community. He spent his days in the presence of others, as he had throughout most of his life.

When the rabbi was taken to his room for tube feeding, Namaste Care continued. His favorite music was played, or a video of religious services was shown on his television. There would be no more soap operas or Jerry Springer.

Administrators want the best possible quality of life for the people under their care. However, administrators also have fiscal responsibility for the care home, so cost is a primary concern when implementing Namaste Care. One of the first steps is to develop a budget that includes expenses and a projected increase in revenue.

PLANNING FOR NAMASTE CARE

Developing a budget and a plan for Namaste Care requires addressing considerations related to staffing, the physical environment, and management support. The budget should also outline projected revenue increases from implementing Namaste Care. The Namaste Care program can attract more people to the care home, helping to grow the census by offering a special service and a greater quality of care.

Staffing and Salary Considerations

Any proposal for a new program will face rejection if it involves adding team members to an already-tight budget. Hiring new team members to provide Namaste Care, at least at the beginning of the program, is unnecessary; with teamwork, nursing care partners can assume the role of Namaste Carer. Because most care homes do not have money to add staff, the care partner assigned to the Namaste Care Group Program might have fewer people to care for in their assignment. When the Namaste Carer is in the Namaste Care room, other care partners can monitor any residents assigned to the Namaste Carer who are not present as part of the program. Models of Namaste Care assignment are discussed further in a later section of this chapter, “Building a Namaste Care Team.”

If the decision is made to add a dedicated Namaste Carer, the hours are usually 9:00 a.m. to 4:30 p.m. The Namaste Care room is open from 9:30 until 11:30 a.m. or whenever lunch is served. It reopens at 2:00 p.m. (1400 in many non-U.S. countries) or when people attending the afternoon program have eaten and are ready. The room usually closes at 4:00 p.m. (1600). The half-hour before opening and after closing gives Namaste Carers time to gather supplies and ready the room for the program to begin. It also allows time at the end of the day for any required documentation and for preparing the room for the next day. The Namaste Care program takes place 7 days per week whenever possible.

The salary of a Namaste Carer should be higher than that of a care partner, as it makes the position a higher-ranking role that might be an attractive professional goal for team members.

Renovation and Supply Costs

As discussed in Chapter 6, the Namaste Care program may take place in a space used solely for the program or in a room that is shared and used for other purposes when the program is not scheduled. When Namaste Care occurs in a dedicated room, give the room a warm, comforting look, which can be accomplished through simple changes to redecorate the space. Some care homes start small, first locating their Namaste Care program in a vacant room or a storage room. As the number of people attending the program increases, a larger space can usually be found. Startup expenses will differ depending on what is needed but may include the following:

- Paint and wallpaper border

- Emergency call system for team members (e.g., a wall call bell, telephone, or handheld device)

- Removal (or disabling) of any overhead paging systems

- Window coverings that filter direct sunlight and look attractive

- Heating and cooling system that can maintain the room at a comfortable temperature for people who are frail and usually cold

- Flooring that can be cleaned easily and does not have a high gloss

- Sink for handwashing
- Refrigerator
- Soap and towel dispensers
- Music system

- Television and video player (e.g., digital media player, Blu-ray or DVD player)

- Nursing supplies (see Appendix A)

- Quilts or blankets

- Reclining lounge chairs; these chairs are usually the biggest expense, although in many care homes, people with advanced dementia will already have a wheelchair that reclines. In the United States, people in hospice care can get a lounge chair as part of the Medicare hospice benefit.

- Small tables (over-the-bed tables will work) for people’s personal items

- Chairs for visitors

- Secured storage for supplies

- Storage for individual blankets, quilts, pillows, and other personal care items; some people are comforted by holding a realistic doll or a plush dog or cat, which can be kept in individual bags with the “owner’s” name to meet infection-control guidelines.

- Homelike Namaste Care cart (trolley)

Lists of activity supplies, such as rain sticks and other sensory items, can be found in Appendix B. Sources for these supplies can be found in Appendix C.

Revenue and Census Projections

Follow these steps to project how much additional revenue you can expect to receive from attracting people to live in your care home:

- Assess the existing dementia care program and decide whether any residents could be relocated to a Namaste Care neighborhood for people with advanced dementia. Residents with advanced dementia are typically no longer ambulatory and may not need a secured unit. Relocating these residents would result in empty beds in the secured neighborhood, which could be filled with people who have moderate Alzheimer’s disease and are still ambulatory.

- Meet with local hospice programs to determine whether Namaste Care would increase referrals from them.

- Meet with referral sources; explain the purpose of Namaste Care and elicit feedback about the need for this type of program.

- Visit your competition to determine whether adding Namaste Care would provide a program not offered by other care homes in your area.

Even though a person may not initially need Namaste Care when moving into a care home, the family may recognize the value of having this program available in the future in case their loved one were to need it. Namaste Care may lead people to choose your care home over another care organization, thereby increasing census and revenue.

Management Support

When the budget has been approved by the administrator, the management team must be convinced to support the program. It is difficult or impossible to start Namaste Care without management’s support. The entire management team needs to be knowledgeable about the Namaste Care concept, and their input must be requested and acknowledged.

In the United States, the director of nursing is at the top of the list of people who must agree to the program for it to succeed. Namaste Care is primarily a nursing responsibility; in fact, some have called Namaste Care an “enhanced nursing” program. The director of nursing is responsible for Namaste Care; however, the day-to-day supervision of the program is often delegated to an assistant.

Whoever supervises Namaste Care should observe the program at least once a day to ensure that all regulations and infection-control requirements are followed and to monitor behavioral changes of people who are taking any type of psychoactive medication. On weekends, this responsibility is assigned to the nursing supervisor. One goal of Namaste Care is to eliminate or at least decrease the need for psychoactive medications, so the presence of nursing is extremely important. Nurses are responsible for calling the physician regarding decreasing or eliminating medications.

Other members of the management team need to be supportive because they all have a role in the success of the Namaste Care program or neighborhood. Different professionals who are involved in Namaste Care and provide their expertise may include the following:

- The care home’s activity department often has primary responsibility for the Namaste Care Group Program. In the United States, all nursing homes and assisted living communities have activity departments. They also exist in care organizations throughout the world but may have a different name, such as a “life enrichment department.”

- The director of maintenance is responsible for making renovations to the Namaste Care room and ensuring that all equipment adheres to fire and safety codes.

- The director of housekeeping is responsible for keeping the Namaste Care room supplied with linens and maintaining the room in a clean, safe condition.

- Some care homes have marketing departments or individuals who are responsible for informing people in the community about this special program.

- The director of admissions or social workers can be responsible for explaining Namaste Care to new families and giving talks in the local community.

- The director of food services is responsible for providing beverages and snacks on a daily basis and ensuring that food-safety regulations are followed.

- Often, a director of staff development is responsible for educating all new staff and for providing educational sessions about any new programs that are introduced in the care home. This professional educates all staff members and families about the Namaste Care program and ensures that Namaste Care is part of the orientation for all new employees.

Depending on the country, any of these responsibilities may be assigned to different team members.

As part of the implementation process, the administrator should schedule a meeting with all team managers to explain the Namaste Care program. Before this meeting, it is helpful to have all team members read this book so they have some idea about the program and can consider the impact it may have on their department. After the initial meeting to disseminate information and answer questions, the administrator and team managers develop a plan for implementation. Some administrators prefer to form a smaller group of team managers to develop the implementation plan and then present it to all managers for their input.

BENCHMARKS FOR IMPLEMENTATION

With the backing of the management team, the implementation process begins. A good plan is one that is flexible enough to change as needed. A sample implementation schedule is as follows:

1. Schedule an informational meeting with all team members to explain Namaste Care. This meeting may include educational information on Alzheimer’s disease. Educating all team members employed in the care home about Alzheimer’s disease is one of the first steps in ensuring that the care home is “dementia friendly.” Many countries require Alzheimer’s disease education for team members during their orientation.

2. Communicate information about Namaste Care to team members who were unable to attend the educational meeting. Examples include inserting a letter explaining Namaste Care into their pay envelopes or sending it via email or another electronic communication system within the organization (e.g., digital workspace or file-sharing service). This communication should reinforce what was explained during the meeting. Translate this letter into other languages as necessary for your staff.

3. Meet with local hospice programs and other referral agencies to explain the program.

4. Schedule a family meeting to explain Namaste Care to families and answer any questions.

5. Follow up this meeting with a letter to families or an article in the care home’s newsletter.

6. Schedule a meeting with residents who are alert and oriented to discuss Namaste Care and answer their questions.

7. Decide on the location of the Namaste Care room and any other special rooms associated with the program, such as the Reagan Room (a private room for people who are actively dying; see Chapters 6 and 9).

8. Interview team members who may want to work in the program.

9. Select and hire Namaste Carers or team members.

10. Provide special education for the Namaste Carers who will lead the daily program.

11. Purchase supplies and equipment.

12. Make any needed environmental changes to the Namaste Care room.

13. Identify whose quality of life might be improved by attending the Namaste Care Group Program, then inform families that their loved ones have been selected as good candidates for this new program.

14. Determine a start date for the Namaste Care Group Program.

15. Issue a press release on how your care home will be implementing the Namaste Care program.

16. Plan an opening celebration; include all team members, residents, and the residents’ families. You might also invite referral sources and the news media. If members of the media take photographs, make sure that permission is obtained for all pictures taken. Families should sign an agreement granting permission on behalf of their loved one with dementia to be photographed and for the person’s picture to be published in the media. However, it is also important to ask the person him- or herself, in the moment, if it is OK to take a photo.

After Namaste Care has been introduced, the team’s energy and enthusiasm for this approach will carry the implementation through the challenges that always surface whenever a new program is started in a care home.

INTERNAL MARKETING

Internal marketing is highly important. It is a mistake to implement a new program or make major changes without letting all team members know what you are doing. Rumors begin flying, and misinformation is difficult to dispel. Inform all team members about the new program as soon as the decision is made to go forward with Namaste Care.

Given personal days off, sick days, and vacation time, informing all team members in the care home about Namaste Care in a timely manner can be a challenge. A mandatory meeting for all staff is recommended but may not be feasible because of the high cost of bringing in team members when they are not scheduled to work. Also, some team members have two jobs or have childcare responsibilities that make attending a special meeting outside their scheduled work time difficult or impossible. An alternative is to schedule several short 30-minute meetings during a 2- or 3-day period. Assign one or two people to lead the meetings to ensure a consistent message is provided. If another care home in your organization has a Namaste Care program, staff might visit so they can see the actual program and share their impression with other team members.

During the outbreak of COVID-19, digital communications such as Zoom came into common use to educate staff. If team members have computers, a digital meeting or video conference may be a productive way to provide education about Namaste Care while they are at home. Team members are paid to attend these video education programs.

Even after this initial educational meeting, the person responsible for the orientation of new employees should integrate Namaste Care information into all orientation in-services. Here are some creative ideas on how to educate team members and generate buy-in and excitement:

- Hold a special in-service and award a certificate to all those attending. Sound a chime or singing bowl to begin the meeting. The sound grabs attention and creates a dramatic beginning to the presentation.

- Provide education during a working lunch for each department. Serve food during the presentation and use the opportunity to personally thank all team members for how they care for and about the residents, their families, and each other.

- Pamper team members with Namaste Care supplies and activities. Give hand massages, play soothing music, and distribute lollipops to simulate some of the meaningful activities offered to residents during the Namaste Care day.

As part of the orientation for new care partners, some homes have new employees spend time in the Namaste Care room. Often, a new employee expresses a desire to be a Namaste Carer after that experience. Immersing staff in the Namaste Care program during educational programs can also help market the program beyond the care home. One director of care in Canada would have nursing students attend and participate in Namaste Care. Many students told her they planned to carry the message of the calm environment and the loving-touch approach into their own careers after graduation. See this chapter’s section on “External Marketing” for more on how to spread the word about Namaste Care.

BUILDING A NAMASTE CARE TEAM

Creating an excellent Namaste Care program involves recruiting team members who seem interested and excited about implementing Namaste Care. Members of the Namaste Care team show passion for their work; take a personal interest in each resident; and have good ideas on how to improve the care that is offered, especially to people with severe dementia and other complex needs. Namaste Care principles can be incorporated into the work and responsibilities of each department.

Social Work

In the United States, nursing homes must employ social workers. They are usually responsible for helping with admissions and discharges. Social workers complete a Social History, now often referred to as the Life Story, for the person being admitted to the home. The Life Story includes information about the person’s life, such as occupational history, marital status, family members, and other nonmedical information. As described in Chapter 3, the Life Story is an important tool in Namaste Care that can be used to connect with people who have dementia and individualize the activities and care provided to each person.

Social workers are encouraged to work closely with the person’s family members and friends to create an easy-to-read Life Story that includes pictures from the past. As an example to share, I created a Life Story for myself that would be useful if I had advanced dementia. I used colorful paper, and on the first page was my name and a picture of me when I was in my 30s. The second page read, “Joyce Simard was born and brought up in Concord, New Hampshire.” I put a picture of the state capitol building on that page. The next page read, “Joyce was the only child of Doris and Emile Simard” and showed pictures of my parents when they were about 60 years old, with each of their names on the photos. Another page stated, “Joyce had four children, Michael, Leigh Ann, Stephen, and Jennifer.” I included a picture of my children when they were in their 20s. I’ve been married a few times, so I included a picture of each wedding, as I have no idea which husband I will remember! This Life Story is an easy way to help people with Alzheimer’s disease recall important people, places, and events in their lives. Visitors can also use the Life Story to communicate with the person. The Life Story can be given to the family when the person dies as a nice tribute to their loved one.

Nursing Team

The nursing team, usually the main workforce in a care home, is normally composed of licensed nurses and care partners. Qualifications for each of these team members differ by state in U.S. care homes as well as by country. Because the nursing team plays such an integral role in coordinating and overseeing Namaste Care, teamwork is essential among nursing staff. Supporting each other is key to providing quality care.

All members of the nursing team should know the principles of Namaste Care. Staff who come together are best able to manage their responsibilities to the program and to the residents in their care. Teamwork is especially needed on days when some care partners are ill or on vacation and everyone has more people to care for than usual. In these situations, nurse managers may assist with providing personal care alongside the care partners. Hands-on support from management is a practical and powerful way to show nursing staff how a unified team functions.

Nursing can also determine ways to share tasks and complete them more efficiently. As an example, one care home hired older people who could no longer provide personal care that involved lifting but could still make beds, a time-consuming task that many care partners were struggling to complete along with personal care tasks. This additional assistance was great support for care partners.

Namaste Carer

In most countries, Namaste Carers are usually trained care partners. This enables the Namaste Carer to provide beverages and food, as care partners know how to feed people with advanced dementia. It is always preferable for team members to decide how to assign staff to the Namaste Carer role and who will assume the role. When this is a team decision, not a management one, the quality of the program improves because the role is not just an assignment; it is the care partner’s choice.

Candidates for the Namaste Carer Role

Any care partner can be a Namaste Carer. The person just needs to understand the details of daily programming. It is always best if the care partner has expressed a desire to be a Namaste Carer. The meaningful activities offered in Namaste Care are focused on process, not task, and not all care partners are suited to this unhurried approach to care. However, avoid any assumptions about which team members are best suited to the program and which are not. Sometimes the most task-oriented care partner, someone you would never expect to enjoy Namaste Care, becomes transformed by the magic that happens in the Namaste Care room. One care partner, Betty, is an example of how Namaste Care can be fulfilling for even the most unexpected of care partners.

BETTY

Betty was one tough cookie. She was very strong-willed and resistant to change. It was apparent that Betty loved the residents, but her approach focused on getting the task accomplished more than on the process of doing it. She was very proud of the number of showers she could provide and that her beds were generally made before the other team members’ beds. She listened to the Namaste Care presentation with a dubious look on her face. She said that she would do the job “if she had to.”

Because of her negative attitude, the manager had not selected Betty to be one of the care partners assigned to work in the Namaste Care room. The week after the Namaste Care program opened, a meeting was held to get feedback from the staff. Betty immediately began critiquing the changes. She told management that they were expecting too much from the overworked care partners. The 9:30 a.m. start time was unrealistic, and having five residents in the program was, in her words, “crazy.” Other staff members jumped on board and supported Betty. They wanted management to hire more staff, which wasn’t a possibility.

One day, the care partner who had been selected as the Namaste Carer called in sick. Betty was asked to fill in for her. “Absolutely not,” she declared. She was perfectly happy taking care of the other residents. The manager realized that Betty might be reacting this way because she had not been selected in the first place, and her feelings were hurt. The very wise manager asked the director of nursing (DON) to let Betty know that she thought Betty could do a very good job with Namaste Care programming because she knew how much Betty cared for her residents. Betty reluctantly agreed, and the next day, another Namaste Care miracle began.

Betty arrived to begin the Namaste Care program with a small tabletop water fountain and plastic music box. At 9:30 a.m., Betty had more residents in the room than ever before. The look on her face as she was providing foot massages was one of absolute pleasure. Everyone from the administrator to the DON visited Namaste Care that day to see the “Betty miracle.”

When I consider the ideal qualities of a Namaste Carer, I can’t help but think of Mary Longtin. When the first Namaste Care program opened in 2003 at the Vermont Veterans’ Home, Mary became the first Namaste Carer, demonstrating an unparalleled commitment to the program and its participants.

MARY LONGTIN

Until she retired, Mary touched the lives of residents and their families. Christian Cosgrove, Director of Social Services at Vermont Veterans Home, says, “Mary was always committed to making a difference in her residents’ lives and was always totally committed to Namaste Care. She believed that every new resident was special and took the time to get to know them and what would be special at this time of their lives.” Mary recognized that these residents would spend the last days of their lives in her care. She says, “Namaste Care always comforts me in knowing that I could give veterans and their families the very best personal care in a room that reminds them of home, as well as a hand to hold and shoulder to cry on. I have fond remembrances of each and every person who has touched my life. I put myself into their lives as a family member.”

In addition to nursing care partners, auxiliary staff members may also serve as Namaste Carers, as shown by one care home in the United States that needed more than one Namaste Care program. The original program was on the second floor, and people from the entire care home were brought to the Namaste Care room. When the care home had more Namaste Care participants than could fit into this room comfortably, another program was established on the first floor. Although this care home usually hired someone with a nursing background, the nurse manager selected the receptionist, Averie Smith, as Namaste Carer for the second program because he had a warm, nurturing personality and he loved the people who lived there. He did an extraordinary job. With a limited budget but great creativity, Averie transformed a room that was used for family visits and staff meetings into a warm and inviting space for Namaste Care. When I visited, he had just given the residents facials. The Namaste Care participants looked so peaceful, their faces glistening with a beautifully scented lotion, that I wanted to sit down and ask him whether I could have a facial too!

Being a Namaste Carer is less about the person’s background; it’s about having the heart for this work. Staff members who take turns helping in the Namaste Care room have included restorative aides, activity assistants, and managers who sign up for an hour each week. In one home, the housekeepers spend 15 minutes in the morning taking people to the Namaste Care program. Even if only a small-time commitment, this type of teamwork makes a huge difference in the workload of care partners.

Namaste Carer Assignment

Depending on the needs and budget of the care home, the Namaste Carer role can be staffed by care partners or be a separate position within the care organization.

Care Partners as Namaste Carers. In most care homes, one care partner from the dementia care neighborhood is designated as the Namaste Carer and is assigned to the Namaste Care room for the morning group, and another care partner is assigned to the afternoon program. In other care homes, one person is responsible for both the morning and afternoon programs. When the care partner opens the Namaste Care Group Program, other care partners watch the residents assigned to the Namaste Carer who are not in the group. People from the entire care home can be transported to the program by any team member and then become the responsibility of the Namaste Carer.

Sometimes, the Namaste Carer is a care partner who works in a neighborhood that has more people attending the Namaste Care program, whereas in other care homes, the role of Namaste Carer is rotated among care partners from all neighborhoods. Care homes may shift the responsibility of being a Namaste Carer so that all care partners have a chance to assume this role for the morning and afternoon program or just for one session. For instance, the role of Namaste Carer may rotate so that each care partner has at least one day a week in the program. Another way to rotate the role is to assign different care partners to either the morning or afternoon program, rather than having one Namaste Carer for the entire day. As an example, the afternoon program may occasionally be assigned to staff members who work a later shift (e.g., 3:00 to 11:00 p.m.), so that staff who work later in the evenings have the opportunity to serve in this role. Eventually, one or two people may shine in the role and decide to take on the assignment every day.

When care partners share the role of Namaste Carer in a care home, the most successful staffing models often designate two or three care partners as Namaste Carers. These care partners enjoy providing meaningful activities and take turns assuming the role of Namaste Carer on a regular basis. With at least three Namaste Carers regularly assigned to the Namaste Care room, coverage can be provided 7 days per week, with allowances for vacations and illnesses.

Designating three main Namaste Carers results in better communication about the likes and dislikes of each person who regularly attends the program. These Namaste Carers also become better acquainted with families and how to support them. I have known several families who continued to come to the Namaste Care room as volunteers after their loved one had died, in part because they missed seeing the Namaste Carers who had become their extended family.

When a few select care partners are designated as Namaste Carers, they tend to feel more ownership of the program and reap accolades from families and visitors. These dedicated Namaste Carers are likely to ensure that supplies are well stocked and that the room is clean and orderly. When I am introduced to a regular Namaste Carer, I often see the person light up with pride when talking about the program.

Dedicated Namaste Carer Position. In some care homes, the role of Namaste Carer is a separate position rather than a shared role among nursing care partners. Several benefits are associated with creating a designated position for the Namaste Carer. When the Namaste Care Group Program is offered most days, the stress on other care partners is lowered, along with the rate of staff turnover. A nursing home company I worked with in Massachusetts recognized these positive effects and decided to hire designated Namaste Carers for their skilled nursing homes. The company felt that this additional staff person helped keep family and staff satisfaction high, often leading to very good reviews from regulators.

More seasoned care partners can be excellent candidates for a designated Namaste Carer role. As they age, some care partners struggle to physically provide care, especially as the population in care homes becomes increasingly dependent, with most people needing to be lifted from bed to chair several times each day. Many older care partners might like to continue working, but they may feel they have no choice but to resign when the physical demands of the job take a toll on their health. Care homes could switch the responsibilities of these care partners to those of a Namaste Carer, thereby retaining good, experienced staff members for a longer period of time.

Examples of Assignment Models. Two care organizations, Arden Courts and Hale Nani Rehabilitation and Nursing Center, provide examples of effective models for staffing the Namaste Care program. These staffing models show how teamwork and creativity aid in the implementation of Namaste Care and help the program to excel.

At Hale Nani Rehabilitation and Nursing Center in Honolulu, Hawaii, former administrator John J. Megara instituted five spa-like environments for the Namaste Care program that accommodated 90 people with moderate or severe dementia per day. All team members participated in providing Namaste Care on a rotating basis. A visiting team member from the Centers for Medicare & Medicaid Services (CMS) indicated that the Namaste Care approach is exactly the type of transformational culture change that CMS is looking to achieve in the United States.

The Hale Nani team also created a cart called “Namaste à la carte” to carry the program to the bedside of residents who were unable or choose not to go to the spas. John had a standing order for Namaste Care to be offered every day. When there was a shortage of staff, all team members—including John, the director of nursing, and any senior management staff—were available to pitch in and ensure that the spas remain open every day. They found that all their residents, not just those with advanced dementia, thrived from the loving-touch approach to care. I have always been grateful to John for teaching me another way to offer Namaste Care.

Arden Courts, an assisted living company in the United States, has also demonstrated flexibility and teamwork in staffing the Namaste Care program. The Arden Courts community consists of small houses with six bedrooms in each house and one larger building in the center of the grounds. Each house has its own routine. Some houses have chosen to rotate Namaste Carers in the Namaste Care room. Sometimes, Namaste Care is offered in the living rooms of all houses at a given site. At other sites, the program takes place in the central building.

Some communities rotate the Namaste Carer continually throughout the day, assigning care partners to different time slots. In this arrangement, a daily staff-assignment sheet designates who will be the Namaste Carer during specific segments throughout the day. These sheets are posted by the time clock so care partners can see what assignment they have when they punch in for their shift. Each house contributes a staff member during the same 30- or 60-minute time segment each day, which keeps them free to continue caring for those who are not participating in Namaste Care the rest of the time (e.g., “Boathouse” is responsible for the 10:00 a.m. to 10:30 a.m. slot each day). Carers are rotated to avoid burnout. The house that is scheduled to take the first half hour of Namaste Care is responsible for setting up the room, but the host house prepares the morning and afternoon beverages in cups with the person’s name on them. Each house has a dishwasher, so the cups can be washed after each session.

Each Carer receives a list of people they are assigned to care for and to check on during their Namaste Care shift. This does not work unless the care partners support each other, and when a care partner is busy with a person in Namaste Care, other Carers cover that team member’s assignments.

One Arden Courts community initially scheduled just one Carer for the 2-hour afternoon program but changed to the 30-minute assignments when all Carers at the community expressed a desire to participate in the program. Eventually, some Carers may enjoy Namaste Care more than others and ask for a longer assignment. One of the strengths of an organization like this is that managers listen to the Carers and make changes accordingly.

Namaste Care Volunteers

When the Namaste Care Group Program is part of a larger community, such as one that offers independent living or assisted living, volunteers can be recruited for Namaste Care from these settings. All volunteers, including family members, must be approved by the team member responsible for the volunteer program and may be required to have a background check and a tuberculosis skin test before qualifying to volunteer. Approved volunteers should undergo orientation about the Namaste Care program. Volunteers are never left alone in the Namaste Care room without a team member (usually the Namaste Carer) present.

Volunteers can also be recruited for Namaste Care from church groups and programs for older adults. Occasionally, alert residents who live in the care home have volunteered as Namaste Care volunteers. Their service gives them a continued sense of meaning and purpose in their lives.

Other Support Staff

Team members who do not provide direct care are also involved in upholding the spirit of Namaste Care. These staff members contribute to the Namaste Care environment and are encouraged to engage with people in the care organization using the loving-touch approach.

Housekeeping

The housekeeping team helps to maintain a calm environment. Whenever they come in contact with a person in the Namaste Care program or in a Namaste Care home or neighborhood, housekeeping staff are encouraged to stop what they are doing, make eye contact, and physically touch the person in a loving way. Housekeepers should always ensure that if they touch someone, their hands are clean and sanitized for infection control.

Occasionally, a housekeeper is working in a room where someone is in bed. The Namaste Care approach is for the housekeeper to lovingly touch this person if feasible. When they are wearing gloves and cannot use touch, housekeepers introduce themselves and connect with the person by using their eyes. They speak softly to the person about what they will be doing in the room. When they leave the room, they say goodbye.

Laundry Staff

Team members in this department bring clean laundry to people. Laundry staff get to know everyone’s names, as they must know which clothing belongs to which resident. If the person is present when the clean clothes are delivered, the laundry team member speaks to and engages the resident. For example, the staff member compliments the person on having such beautiful clothing.

Maintenance

The maintenance team is usually made up of staff members skilled at keeping the mechanics of the care home working. They are responsible for the electrical system and the water supply, and they ensure the building meets the safety standards as outlined by state requirements in U.S. care homes or by country. This team is aware of each person’s safety in the care home and honors residents as individuals. They also take a moment to greet the people they encounter as they go about their work.

Food Service

Some food-service staff cook for residents but do not see the people who will receive the food. In some organizations, food-service staff serve the meals and so have a great deal of time to speak with and touch the people who they are serving. It would be in the spirit of Namaste Care to have the cooks occasionally come from the kitchen and speak to residents. Kitchen staff may receive some valuable feedback from residents about the food by watching their expressions as they are being fed. By observing the residents, they may also form new ideas on how to design easy-to-eat meals so that even people with advanced dementia can feed themselves.

Food-service staff make a valuable contribution to Namaste Care by offering foods and beverages that provide nourishment during the program. In one home where I was consulting, the food department sent puddings and ice cream for the afternoon program and juice for the morning program. When the director of food service came to see the program, she immediately realized that the juice had very few calories and that people with advanced dementia often lose weight as the dementia progresses. Because these residents needed as many calories as possible, she sent easy-to-swallow, calorie-rich smoothies in various flavors to help slow weight loss.

NAMASTE CARE EDUCATION

Everyone in the care home or organization should be educated about all aspects of Namaste Care. All staff receive a 1-hour presentation prior to implementing Namaste Care. A sample outline presented in Chapter 5 can be adapted for Namaste Care education in any setting.

Educating Existing Team Members

This book can be used as an outline for a Namaste Care in-service. The education program usually lasts 45 minutes; allow another 15 minutes for questions and comments. Begin by explaining the meaning and philosophy of Namaste Care and describing a typical day. Role-playing is an effective education tool, with a team member assuming the role of a person with advanced dementia. You can create a Namaste Care atmosphere in the room where the in-service is held so that when team members enter, they can experience the difference in the environment. Dim the lights, spray the room with lavender, and play music.

During the presentation, you might offer an example of a person in your care home who could benefit from Namaste Care. Stories can be a powerful teaching tool. Consider using the rabbi’s story at the beginning of this chapter. Here are examples of two additional stories that could be told as part of an in-service. Each is a true story of how Namaste Care has dramatically benefited people in the program.

- Story Option 1: In a London care home, a woman had been in bed for 5 years with severe contractures. She needed a very expensive chair, but the administrator felt that because she was unable to attend any activities, the cost could not be justified. When the Namaste Care program began, the administrator purchased the special chair for the resident so she could be taken to the Namaste Care room and be in the presence of others, no longer isolated in her room. Her son visited the day her chair arrived, and when he saw his mother in a room with other people receiving a gentle massage, he broke down and cried with happiness.

- Story Option 2: A care home in Australia used a large room for the Namaste Care program. One of the residents had been isolated in bed because of a severe skin breakdown. The bed even had a special air mattress. No one ever thought about the resident attending any activities. When team members saw the Namaste Care Group Program, they realized this resident could have a better quality of life if she could be included. So, together, they wheeled the entire bed to the Namaste Care room! Thanks to the determination of these team members, the resident could finally take part in something and be surrounded by comfort and care, which drastically improved her quality of life. The team embodied this quote by Robert Kennedy: “There are those that look at things the way they are, and ask why? I dream of things that never were, and ask why not?”

These or similar stories from this book can be used to inspire and motivate the team in implementing the new approach to care. Ask staff if they can identify people in the care home with severe dementia who might benefit from Namaste Care, such as people who are usually isolated. This exercise makes the introduction of Namaste Care more personal and demonstrates an immediate difference the program might make for people in the care organization.

Everyone attending the educational program should be encouraged to ask questions about any aspect of the program or make suggestions for improvement. At this point in the planning process, you will know whether the Namaste Carer will be a new position or one that is shared among staff. This information will be important to explain to team members during the in-service, especially if this role will be added to their job description. Team members will also be interested in knowing when the program is scheduled to open. Tell care partners that if they are interested in working as a Namaste Carer, they should let their supervisor know.

In the spirit of Namaste Care, you might give each team member a lollipop at the end of the in-service, so that people leave with a smile.

Educating New Team Members

Once the Namaste Care program has been implemented, all incoming team members should receive Namaste Care education during their general orientation to the care home or organization.

In the United States, most states require nursing homes to provide general information about Alzheimer’s disease as part of the orientation for all new employees. Education of new team members usually begins with a brief description of Alzheimer’s disease by a speaker, usually the administrator or director of nursing. The presenter reviews basic information about Alzheimer’s disease, including risk factors, warning signs, diagnosis, treatments, disease progression, and behavioral health symptoms. For this introductory education, the focus is on a detailed picture of what advanced dementia “looks like.” Discuss the benefits and burdens of cardiopulmonary resuscitation, hospitalization, treatment of infections, tube feeding, catheters, and medications. Additionally, emphasize the importance of providing comfort care to people with advanced dementia. Helpful resources to inform this discussion include the Alzheimer’s Association (www.alz.org/index.asp) and Alzheimer’s Disease International (https://www.alz.co.uk/).

After this general introduction to dementia and dementia care, team members are provided with handouts that include a brief description of Namaste Care. The education session can continue with a complete introduction to the program, as was presented to the more experienced team members when Namaste Care was first implemented. If possible, it is a good idea for new employees to spend 30 minutes watching the morning or afternoon program, so they can see Namaste Care in action.

ONGOING COMMUNICATION AND EVALUATION

After Namaste Care has officially begun, ongoing evaluation and communication must occur. At least once per month, Namaste Carers and other team members should have an opportunity to discuss the program. To keep the program growing, the team can be asked to recommend additional people who would benefit from Namaste Care. Namaste Carers should also review the status of those currently attending the program and share what they know about activities each person enjoys. Often, care partners will try these activities on their own when they have a break in the day or if the person becomes agitated. Namaste Care techniques, such as hand massages or fussing with the person’s hair, are helpful for all team members to use as a way of calming people with advanced dementia.

Ongoing communication is especially important during the early stages of program implementation. Leadership should provide regular updates to all involved team members about the progress of the program and the next steps in the implementation process. Huddles are a good way to provide these updates.

Huddles

Huddles are brief meetings scheduled at a time when most care partners are present. They provide a forum to thank all team members for their help in making Namaste Care a reality. Regular huddles to discuss the program allow administrators to solicit questions and suggestions from everyone. They offer an opportunity for team members to discuss what is going well and what challenges are occurring. Huddles also are a good way to dispel any misinformation or rumors related to program implementation. Here are some good opportunities to call a huddle:

- While waiting for lunch to be delivered: No one is on break or at lunch during this time, and nurses and care partners are usually gathered in the dining room, where people are assembled and waiting for the meal to be delivered. Housekeeping and activity team members can join the group in the dining room for a huddle.

- Just before the work shift: Adjust the schedule so that team members arrive 15 minutes before they are scheduled to start their regular care work so they can join the huddle.

- When most residents are attending a large-group entertainment program.

- Any time that the nursing team members suggest: Team members have a better feel for what needs to be accomplished and when colleagues are available, so they may know the best time for a huddle.

After Namaste Care has started, huddles can be held in the Namaste Care room with all the people present as long as no private information is discussed (e.g., private health information about residents or personal matters about a resident’s family). A care partner from another neighborhood or someone from the management team can keep an eye on the Namaste Care participants during the huddle. This show of support from managers goes a long way in helping care partners feel that Namaste Care is important.

Remember to keep meetings brief and positive. Avoid putting pressure on care partners or adding extra tasks for them to complete. Include evening-shift employees in some huddles. Although these team members do not work during the hours when the programming occurs, it is important for them to feel included and to be knowledgeable about Namaste Care. Some care homes have a Namaste Care cart with supplies so that employees working the evening and night shifts can offer Namaste Care activities if a person is having problems sleeping or is actively dying. For any information that is not covered in a huddle, consider posting notices near the time clock; this ensures that all team members will see the postings.

During these meetings, new ideas will be generated that will help Namaste Care grow and will make your care home’s program unique. Namaste Care is like a butterfly, and team members give it wings.

Program Evaluation

Mechanisms should be in place so that any administrator or department manager can evaluate the program to ensure its ongoing integrity. A Namaste Care checklist such as the one in Appendix D, for example, aids in this evaluation process by ensuring that routine maintenance procedures are followed and that supplies are kept on hand. Oversight by the administrator or department manager should occur on at least a monthly basis. With the checklist in hand, the evaluator can assess the program in a short period of time.

INTRODUCING NAMASTE CARE TO RESIDENTS AND THEIR FAMILIES

Residents and their families should be informed about the Namaste Care program early in the implementation process. Families are key to the program’s success and are often present in the Namaste Care room, so it is important that they understand the program and ways that they can be involved in the care of their loved one with dementia.

Current residents should also be informed about Namaste Care and all that it has to offer. They should understand ways that they might directly benefit from the program and participate in it. Alert and oriented residents may even want to serve as volunteers who will sit next to a resident in the program who appears sad or agitated. Some residents have no active families, and having someone sit next to them and hold their hand is a lovely gift!

Communicating with Families

A special meeting should be scheduled to inform current family members about the plans to implement Namaste Care. They will begin to hear about the program from team members, so it is important to inform them as soon as possible after a decision has been made to implement the program. Family members, especially those who have a loved one with dementia, should understand how the Namaste Care program is offered and how it might benefit their loved one. If Namaste Care will be provided within a dedicated neighborhood, clarify that when a person’s dementia becomes advanced, team members may recommend a transfer to the neighborhood but that families make the final decision.

Introducing Namaste Care to families provides an opportunity to educate family members on medical issues that are often associated with severe dementia, such as decreased appetite and weight loss, dehydration, and the risk for hospitalization from urinary tract infections. Families can then learn about how Namaste Care helps to address these medical needs (e.g., by giving high-calorie foods and continually offering beverages to prevent dehydration and urinary tract infections). To promote attendance, invite a healthcare expert, such as a hospice provider or the care home’s medical director, to present at the family meeting.

A happy family member is the care home’s best spokesperson. As just one example, one spouse—the leader of a support group for families affected by dementia—could not wait to share her experience with the new Namaste Care program offered at her husband’s care home. That night at the support-group meeting, she enthusiastically spoke about Namaste Care and described the hand massage her husband was receiving when she visited. She said that she enjoyed this visit because the Namaste Carer gave her hand lotion to apply, and her usually unresponsive husband said, “I love you.” Her testimonial motivated another family member at the meeting to transfer her husband to this care home.

Introducing Namaste Care to Residents

Although Namaste Care is tailored for residents with advanced dementia, all residents in the care home should be informed about the program. In the United States, care homes have resident councils as a way for long-term care residents to discuss any issues related to the care home and to advocate for their rights and needs. The president of the resident council should be informed about Namaste Care and asked to schedule a special meeting. At the meeting, everyone is told about Namaste Care, given written information on the program, and asked for feedback.

The meeting can be enjoyable and educational. Namaste Care activities, such as hand massages, can be demonstrated, and lollipops or ice cream can be offered to everyone. People who do not have significant memory loss should be encouraged to visit the Namaste Care room when it opens. Again, these residents can be recruited as Namaste Care volunteers.

This meeting also provides a natural opportunity for people to discuss end-of-life issues, such as hospice care and advance directives. These topics may be less distressing to discuss for residents than for their family members. One resident named Mary, who was in a great deal of pain and approaching the end of her life, expressed a common sentiment I have heard when I asked her whether she was afraid of dying. “Oh, no,” she replied, “It’s the living I fear!” As they reach the end of their lives, many residents might want to discuss and plan for the dying process. In my conversations with residents, people often share their wishes; many express that they do not want to die in pain or alone. Rather than being afraid of death, most residents are just amazed at having lived so long! Residents who attend the meeting about Namaste Care seem comforted to know that this type of program is available to them if they should need it.

EXTERNAL MARKETING

All team members offering Namaste Care have a role in marketing the program. Implementing the Namaste Care program has been shown to increase job satisfaction among team members and decrease staff turnover. Team members are invited to share their positive experiences and promote the Namaste Care program to their families, friends, and communities. The care organization can generate public interest in Namaste Care through the media and other coordinated marketing efforts.

Public Relations

Public relations and the marketing of Namaste Care to the local community should begin as soon as the decision has been made to implement the program. A press release is a good way to inform the media about Namaste Care. Include information about the program and a contact number. Be sure to follow up with media outlets after the press release, especially if the object is to get coverage for an event, such as the opening of the program or Namaste Care neighborhood. Media sources need reminders for several days leading up to the event.

When the program is in place, it can be publicized in various media outlets, including newspapers, magazines, radio, television, and social media. Reporters and journalists can be invited to view the program and interview Namaste Care team members. This can be a very positive experience, as long as the team is well prepared.

When members of the press are invited to the building, take measures to ensure that everything is sparkling. Remember that the overall impression of the building, the people living there, team members, and the care provided will influence what the media will convey to the public. Some Namaste Care neighborhoods have special T-shirts made for team members to wear for these events. Before the visit, you may want to provide media personnel with a description of Namaste Care and advanced dementia so they are aware of the program and its benefits.

Team members are informed in advance that media personnel will be visiting the care home. Administrators may want to schedule an additional care partner to help get people up and groomed. Each person in Namaste Care should always be well groomed; on a day when the media personnel are in the building, take extra care to have residents looking their best. Housekeeping should also be advised about the visit; if necessary, schedule extra housekeeping staff that day to ensure the care home looks clean and attractive. It is also important to take a walk outside the care home before the press arrives to make sure trash is picked up and landscaping is in good condition. I’ll never forget one building I once toured. The dining room had flowers on all the tables, but the flowers were all dead. Many years later, I still remember the image.

The Namaste Care room should be set up, with Namaste Carers giving hand massages and providing sensory activities. When reporters see the activity in the room, witness the happy expressions of residents, hear the beautiful music, and smell the scent of lavender, they will have a true image of Namaste Care.

As mentioned in Chapter 6, members of the press must adhere to confidentiality protocols and should not use anyone’s name or picture without written consent, either from the people being photographed if they have the capacity to give permission or from their family or other legal representative. Family members of Namaste Care participants may have strong feelings about having their loved one photographed at this time of life. Inform photographers in advance about whom they can and cannot photograph or film. Some care homes will show who cannot have their pictures taken by placing a sticker on their chair or on their clothing.

Giving interviews to the press is a great opportunity to tell the Namaste Care story. Remember that what is published may be the impressions of the interviewer, not what the interviewee actually said. The person interviewed can ask to see a copy of the article before it is published, but this request is rarely granted. To avoid any surprises, prepare for an interview by developing a list of talking points. These are key responses to questions and what you want to communicate in the interview. Talking points for Namaste Care might include the following:

- The name of your care home

- The meaning of Namaste Care, “to honor the spirit within,” and how it relates to people with advanced dementia

- The groundbreaking nature of the program and how it is part of Namaste Care International, an organization with 12 countries providing Namaste Care (as of 2022)

- The focus on providing improved quality-of-life programming for people with advanced dementia

- The comforting atmosphere of the Namaste Care room dedicated to the new program

- If available, a description of special private rooms (e.g., Reagan Room) where residents and their families can be together at the end of life

- The satisfaction of family members with Namaste Care and with the exceptional care their loved one is receiving

- Introducing the dedicated Namaste Carer (if you have hired additional staff)

The marketing team members can help draft these talking points, or they can be developed with input from the management team. A practice interview may help team members feel more comfortable. I’ve shared some strategies and examples from my interviewing experiences to show ways to respond to an interviewer’s questions, establish your talking points, and make the interview a positive experience.

Sample Interviewer Questions and Responses

Below are some sample responses to interview questions about Namaste Care, including some difficult questions with a challenging tone.

Interviewer: I understand that there is a great deal of abuse in nursing homes.

Team member: We all deplore hearing about the few abuse stories that are in the news. Thank you for providing me with an opportunity to talk about Namaste Care, a new program at Green Oaks Community. It is the first program in our city for people with advanced dementia. We are proud of our reputation for providing excellent dementia care. Our program, Namaste Care, is another example of how we are constantly adding services to help the residents experience a high quality of life while they are with us.

Interviewer: I understand this program is for people with advanced dementia who don’t respond and can’t remember anything. How do you know it makes a difference at this stage of their lives?

Team member: Namaste Care means “to honor the spirit within,” and we believe that all people have the right to excellent care in the presence of others throughout their lives. Namaste Care at Green Oaks not only gives people this quality-of-life experience, but it also helps improve the lives of family members. They tell us they feel a burden has been lifted when they walk into our beautiful Namaste Care room and see their loved one in a comfortable lounge chair taking part in relaxing activities. The residents listen to calming music, receive hand massages, and continually receive snacks and beverages throughout the day to help them consume more calories and stay hydrated.

Interviewer: So much has been in the news about finding a cure for Alzheimer’s disease. Won’t you lose a lot of money if a cure is found?

Team member: If a cure is found, we will be the first to celebrate. However, until that day arrives, we will continue to provide excellent care for people with Alzheimer’s disease and other dementias. Namaste Care is a unique program that offers this type of care to people with advanced dementia.

Most of the time, reporters are polite, and the questions are fair. Even when questions seem leading, they can be turned around so that the care home maintains a caring and professional image. I once did a call-in radio show on Namaste Care that had a few challenging moments. The very first caller shared that he once told his family that he would kill himself if he was ever diagnosed with Alzheimer’s disease. My reply was that receiving a diagnosis of any terminal disease is devastating (validating his feelings), but that now medications and lifestyle approaches may help to slow the disease process (offering hope). I explained that new medications are always being developed and researched and that a cure is closer. Then, to show him that people with dementia can still have fun, I told him about a recent visit to a dementia program where people were having a great time performing a selection of music for me on kazoos. I ended the call with an invitation to visit the care home and see for himself how people can still lead a quality life with Alzheimer’s disease (extending hospitality) and then thanked him for calling. Whew!

Most interviews are not this challenging, and most interviewers are very professional. To establish a connection, ask whether the interviewer has any personal experience with someone who has Alzheimer’s disease. This can add a personal touch to the interview process. It is also a good idea to ask the interviewer how much time has been allocated for the interview. Knowing the time limitations will help you prioritize what to say. Television coverage is usually limited to a brief interview, so ensuring that you get all your talking points across is not easy. The interview is usually shown the same day it is filmed or the day after. Ask when the program will be aired so that the show can be recorded for marketing purposes. Videos of any good news coverage, as well as printed articles, are a bonus to show during marketing events. After the coverage, be sure to send a thank-you note to the news publication, radio or television station, or other media outlet.

Referral Sources

Healthcare professionals who refer people to the care home want the best care for their clients. Care homes implementing Namaste Care should develop marketing materials for potential sources of referrals. Referral sources usually like that the care home is providing a unique program and that the administration is willing to put money, time, and effort into enhancing the care given. Marketing team members appreciate having something new to talk about during their calls to referral agencies. Agencies that may appreciate information on Namaste Care include the following:

- All referral sources currently in the care home’s marketing database

- The local chapter of the Alzheimer’s Association or other organizations devoted to Alzheimer’s disease

- Leaders of support groups for Alzheimer’s disease

- Area Agencies on Aging
- Hospice organizations
- Physicians
- Health maintenance organizations

- Senior referral agencies, such as geriatric case managers

- Hospital discharge planners

In the United States at least, an effective way to publicize Namaste Care is to offer a continuing education program. Many healthcare professionals must have a certain number of educational credits each year to maintain their license. An instructor (usually a nurse or social worker) representing Namaste Care can provide the latest research on end-of-life care as well as interesting clinical information. A continuing education class like this can help attract professionals to your care home.

Everyone attending the educational program is invited to observe the Namaste Care program in small groups after the presentation. Usually, the marketing team members like to provide items to those attending the program. If possible, these gifts should be related to the presentation. For example, a Namaste Care gift bag could contain hand lotion and lavender sachets, and a door prize could be a massage at a local spa. Food served may include smoothies, ice cream, and of course lollipops!

Implementing Namaste Care is a process that requires support from all team members. By helping the program reach as many people as possible, you have the opportunity to educate the healthcare community and families about ways to improve the lives of people with dementia. Namaste Care shows that quality of life is possible for nursing-home residents with advanced dementia and that your care home is leading the way in providing this special end-of-life care. The benefits of Namaste Care quickly became apparent to Matthew’s wife, Celia, thanks to the efforts of staff committed to implementing and spreading the word about the program.

MATTHEW’S STORY

Matthew’s wife, Celia, was invited to a meeting scheduled to describe the Namaste Care program to family members. This meeting was facilitated by the dementia program director, the charge nurse from the dementia neighborhood, and the charge nurse from the new Namaste Care neighborhood. They were able to answer questions from family members, who were concerned that they would have to move their loved ones from their current neighborhood, where they were familiar with the team members and happy with the care. It was reinforced that families had the final say and could choose not to move their loved one.

Celia began to feel more comfortable that Matthew’s excellent care would continue in the new wing. She was also very pleased to hear that Mary Longtin, the restorative aide who had begun what is now Namaste Care, would be leading the program in the new neighborhood. Rather than only offering special activities to residents with advanced dementia for a few hours each week, Mary would now be providing these activities at least 4 hours each day, 7 days per week. Celia knew that Matthew’s condition was deteriorating and decided to begin preparing for his move to the Namaste Care neighborhood in the near future. This family meeting gave her a positive feeling about the care her husband would receive on the new wing, and she felt more comfortable after hearing the charge nurse talk about Namaste Care.

PART III

Death and Dying Care

It is very important to make sure that dying is as pain free as possible, ideally with someone by the resident’s side as he or she leaves this earth. There are many ways to help create a positive ending for the person and his or her family, friends, or caregivers. Chapter 8 describes efforts to enhance the quality of life of the person who is still living, even as the end of life approaches. Chapter 9 presents ways of preparing the person and those around him or her for imminent death and as death occurs. In Chapter 10, a Namaste Care approach is presented for the period after a death that honors the person who died and supports the grieving process of family and caregivers.

CHAPTER 8

Quality of Life at the End of Life

There is no profit in curing the body if, in the process, we destroy the soul.

SAMUEL H. GOLTER,
CITY OF HOPE NATIONAL MEDICAL CENTER

Although Namaste Care™ was originally developed for people with advanced dementia, individuals in the late stage of any disease may choose to be part of a Namaste Care group or individual program. A palliative approach to care is used with many Namaste Care participants. If the person is in a care home, the team works with the person and the physician to provide palliative care, with the treatment focused on comfort and relief from pain rather than on curative medical treatments. Ideally, the resident and family have already discussed end-of-life medical decisions they may face and have talked about what quality of life means to the person at the end of life. For people with advanced dementia who are unable to make medical decisions, physicians discuss palliative care with their families.

DIFFICULT DECISIONS

From the time their loved one begins to show signs of dementia, family members are faced with many medical and psychosocial decisions that become more complex as the dementia progresses. For many families, especially couples, the possible diagnosis of Alzheimer’s disease is too frightening to face, so they may ignore or rationalize the signs of dementia as a normal part of aging. When dementia is first diagnosed and is mild, people may be able to make end-of-life decisions. Unfortunately, by the time many people with dementia are admitted to a care home, they are often unable to participate in these discussions because they are unable to comprehend the issues.

Choosing not to involve a person with an incurable disease in care decisions denies that person the right to self-determination. It is important for people to participate in medical and quality-of-life decisions throughout the disease process while they still have the capacity to make these decisions and are able to communicate effectively.

The family and a physician should initiate discussions about potential medical decisions as soon as the diagnosis is made. When the person with dementia is involved in planning for end-of-life care, some of the burdens family members can feel as the disease progresses are prevented. Most importantly, taking these legal steps will help ensure that their loved one’s wishes will be honored.

To participate meaningfully in any of these decisions, a person must first be aware of the diagnosis of dementia. Virginia Bell and David Troxel, who developed the Best Friends Approach to Alzheimer’s care, created a “Dementia Bill of Rights” (see Appendix E). The first right is to “be informed of one’s diagnosis.” A person who does not want to hear or face the news of having dementia may deny or ignore this reality; however, most people want to know their diagnosis so they can make their own plans for the coming years.

As the following story shows, people can adapt to receiving a diagnosis of Alzheimer’s disease and might even cope better when they have knowledge of their condition.

MICHAEL

Michael had been having problems with his memory for several years. When he became lost while driving home, his family took him to a physician, who diagnosed Michael with probable Alzheimer’s disease after conducting a series of tests. The family refused to allow the doctor to tell Michael this diagnosis for fear he would become depressed. When Michael fell and broke his hip, the family decided he was no longer safe at home and admitted him to a nursing home. At this point, he was also having trouble remembering names, even those of his grandchildren.

Michael was becoming more and more distressed because he did not know what was happening to him. He kept asking the social worker what was wrong with him and then forgetting that he had asked, so he returned to her office to ask her again and again and again. She was not authorized to disclose his diagnosis. Eventually, she scheduled a meeting with the family members to discuss their father’s right to know about the diagnosis. The family reluctantly agreed to let Michael speak with his physician. A private meeting was scheduled in the social worker’s office. When the physician explained that he believed Michael was showing early signs of Alzheimer’s disease, Michael replied, “Thank God. I thought I was going crazy. I can handle Alzheimer’s disease; after all, President Reagan did.”

LEGAL ACTIONS FOR END-OF-LIFE CARE

People can take a number of legal actions to ensure that their end-of-life wishes are carried out. The laws and legal actions discussed in this section are specific to the United States; each country will have its own set of laws and regulations governing end-of-life care, many of them with the same aims as those below—as much as possible to honor the wishes of the person for his or her own end-of-life care.

Advance Directives

Advance directives specify which medical interventions the person would like to receive or avoid. Advance directives can be either written or oral; written advance directives are sometimes called living wills. It can be very difficult to anticipate and specify which medical interventions might be needed, so advance directives are often very general and may not be useful in the case of dementia. What is more useful is appointing a person with power of attorney (POA) for medical decisions.

Power of Attorney for Medical Decisions

A POA is a person appointed to make medical decisions on behalf of someone who can no longer make these decisions independently. Ideally, the individual appointed is familiar with the end-of-life wishes of the person. In the United States, each state determines the procedures for declaring a person legally incompetent. A person must be declared incompetent by a court of law, which will also appoint a POA. This legal process is sometimes long and expensive. Until a POA is appointed, the person is legally in charge of all decisions—an unrealistic task for someone with advanced dementia. If no POA is appointed, most states have a law that determines which relative is the designated proxy. Despite the designation of a POA or designated proxy, disagreements can still occasionally arise between family members with regard to care and treatment decisions.

Physician Orders for Life-Sustaining Treatment

The Physician Orders for Life-Sustaining Treatment (POLST) program is designed to improve the quality of care people with an advanced illness receive at the end of life, and to respect their wishes for medical treatment throughout all healthcare settings (see https://www.cdc.gov/training/ACP/page34804.html). The program was developed in 1990 as a quality initiative to improve patient care and to reduce medical errors.

The POLST form is different from an advance directive because it is a physician order for specific treatment limitations. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form, and a promise by healthcare professionals to honor these wishes. The system focuses on a growing segment of the U.S. population, those with advanced chronic progressive illness; it elicits, communicates, and honors their wishes through portable medical orders. All states either have some type of POLST program or are in the process of approving one. The form has been modified to allow for proxy advanced care planning for people with dementia (Volicer et al., 2002).

The Patient Self-Determination Act

The purpose of the Patient Self-Determination Act of 1990 (PSDA; PL 101-508, 1990) is to inform patients of their rights regarding decisions about their own medical care and to ensure that these rights are communicated by healthcare providers. Specifically, this federal law ensures that people have the right to dictate their future care by completing a living will and appointing a POA should they become incapacitated (https://www.americanbar.org/groups/public_education/resources/law_issues_for_consumers/patient_self_determination_act/).

The law requires care homes that participate in Medicare or Medicaid programs to provide residents and their families with written policies on advance directives. Upon admission to a nursing home, the person and the family are given copies of these policies and must sign a statement indicating that they received them. Each person’s medical record must include information on the resident’s advance directives, if they exist.

Planning for end-of-life care can be overwhelming for families, but there are resources readily available. Searching the Internet will yield many web sites that provide guidance on drafting living wills, as well as sample forms. These are designed to meet the requirements of individual states and countries. Nursing and social work staff can help family members make difficult decisions by providing education on the burdens and benefits of medical interventions.

In the United States, all states have some type of ombudsman program. An ombudsman functions as an advocate for people living in residential long-term care settings and can help residents and families with a variety of issues, including referrals to organizations that offer legal assistance. If a resident is eligible for hospice care, hospice staff will provide counseling to families regarding end-of-life decisions. Hospice also offers grief and bereavement services for up to a year after the death.

FAMILY DECISION MAKING

When caring for a person with dementia, decision making is a process. When dementia is first diagnosed and is mild, the goal may be to prolong life. When the dementia progresses and becomes moderate, goals shift to maintaining function. Once the dementia becomes advanced, the goal of care is to provide comfort using a palliative approach (Volicer, 2013). In the United States, as soon as a person moves into a care home, social workers usually initiate medical and quality-of-life discussions with family members and with the resident whenever possible. The United Kingdom and Australia have social work services available in the local community that help with decision making. Many care home managers in the United Kingdom schedule family meetings on an as-needed basis and may act as facilitators.

Ideally, when someone is admitted to a care home, a POA has already been designated and a living will is in place, or the responsible party is clear about the person’s wishes. However, many families have not had conversations about end-of-life decisions and may still be in denial that Alzheimer’s disease is a terminal illness. In that case, decisions will continue to be made informally and without legal sanction by the family and a physician. Ongoing family meetings are recommended so that decisions do not have to be made at the time of a crisis.

Team members in care homes that provide Namaste Care consult with families whose loved one might benefit from the Namaste Care program. In U.S. care homes, the activity professional might be the team member who recommends the Namaste Care Group Program after observing that the person can no longer actively participate in most activity programs. Often, the activity professional and either the social worker or a nursing team member will schedule a meeting with the family to share their observations and to help family members recognize that their loved one’s condition is advanced. If end-of-life planning has not already been discussed and agreed upon, this is an ideal time to encourage families to look ahead and make plans for a peaceful and dignified death. Without these plans, the person with advanced dementia may be subjected to cardiopulmonary resuscitation (CPR), tube feeding, and hospitalizations, all of which are usually more burdensome than beneficial. A better “treatment” at this stage of the disease is providing comfort care and meaningful activities, such as the daily Namaste Care Group Program. Team members can reassure families about the care of their loved one by explaining how the Namaste Care approach promotes quality of life at the end of life.

Unfortunately, problems can and do emerge when there are no advance directives to follow and the family members disagree on medical decisions. In 2005, the death of Terri Schiavo, a young Florida woman who was comatose and did not leave written advance directives, threw the United States into a fierce debate over end-of-life decisions. This emotionally charged case went to the floor of the Senate and eventually to the Supreme Court. The public battle pitted Terri’s husband and parents against each other in the bright spotlight of the media. If advance directives or a living will had been written, this battle would not have occurred. On a positive note, as a result of this case, more Americans now have signed living wills than at any other point in history.

PALLIATIVE CARE

Palliative care is defined as “whole person care for patients whose diseases are not responsive to curative treatments” (Maxwell et al., 2008). The goal of palliative care is “to prevent and relieve suffering and to support the best possible quality of life for patients and the families regardless of the stage of the disease” (National Consensus Project, 2009). A palliative approach to care includes both medical interventions, such as pain and symptom management, and the more psychosocial aspects of care, such as providing personal care, meaningful social interaction, and engaging activities (Mehta, Giorgini, Ellison, & Roth, 2012).

Recommendations for optimal palliative care in older people with dementia were developed by a Delphi study that included 64 experts from 23 countries (van der Steen et al., 2019). The results of this study included 11 domains and 57 recommendations. Full consensus was expressed on the value of the following features for optimal palliative care: a person-centered approach, communication and shared decision making, treatment of symptoms, advance planning, psychosocial and spiritual support, family care and involvement, education of the healthcare team, and timely recognition when a person is dying, among others.

Unfortunately, palliative care is not available everywhere. Palliative care and hospice programs have been developed in the United States, the United Kingdom, Canada, Ireland, New Zealand, and Australia. Poland, Romania, Slovakia, France, and Germany also have certification programs in palliative care. However, most middle- and low-income countries do not have a certification program in palliative care for healthcare professionals. Palliative care in many countries is also hindered when opioid analgesics are not available.

When a palliative or comfort care approach is used, it may appear that care is being decreased. Palliative care is often confused with hospice care, and families may interpret this approach to mean that their loved one will die soon. It is important for physicians and team members, especially nurses and social workers, to explain to families that palliative care relieves and prevents suffering while trying to increase quality of life. Unlike hospice care, which focuses on the last 6 months of life, palliative care is appropriate for people in all stages of their disease.

The principles of Namaste Care are aligned with a palliative care approach. A primary goal of Namaste Care is to provide comfort in all aspects of the person’s life. The term comfort care usually means not using aggressive medical interventions, such as hospitalization, tube feeding, blood tests, and other uncomfortable or confusing diagnostic procedures. In Namaste Care, palliative care measures include the following:

- Managing pain and discomfort so that each person is comfortable at all times

- Ensuring that activities of daily living (ADLs), which include dressing, grooming, oral care, toileting, feeding, bathing, and ambulation, are meaningful and not just rote tasks

- Clothing the person in comfortable and appropriate attire, not pajamas or a nightgown during the day

- Providing a calm and comforting environment

Namaste Care ensures that people receive specialized services and activities that are meaningful at this stage of their lives. The emphasis is not on the number of days left in a person’s life, but on the quality of those days.

PAIN

Alzheimer’s disease and other dementias do not cause physical pain, yet many people with dementia experience untreated pain from other medical conditions, such as cancer, fractures, arthritis, tooth decay, and osteoporosis. Pain is often undertreated or not treated at all because people with advanced dementia cannot report the pain (Williams, Zimmerman, Sloane, & Reed, 2005). Undiagnosed pain occurs in 26%–83% of all nursing home residents and is a significant problem (Griffioen et al., 2019). To maintain quality of life, it is crucial to recognize, assess, treat, and monitor pain in people with advanced dementia.

People with dementia depend on team members to recognize when they are in pain and to provide relief. Therefore, everyone in Namaste Care must be continually evaluated for pain and discomfort. Care partners and nurses usually are the first to recognize discomfort; however, all team members are expected to report behaviors that may be signs of pain. Namaste Carers often notice such changes in people with advanced dementia because they see them every day for a significant number of hours, more than any other team member.

Namaste Care embodies the hospice philosophy regarding pain: Believe the person complaining of pain. If the person reports or shows signs of pain, the individual is given pain medication and then carefully monitored to ensure the medication has been successful in relieving the symptoms. When a person is in pain, any attempt by the Namaste Carer to provide meaningful activities will be difficult or impossible.

Determining the level and location of pain in a person with advanced dementia is like solving a puzzle. Nurses and all team members must be aware of these verbal and nonverbal signs of pain:

- Facial expressions that show discomfort, such as grimaces, frown lines, and tense expressions

- Tension in the body, stiffness, or unwillingness to respond to a request to move

- Decreased ability to assist in performing ADLs

- Noisy, labored, or rapid breathing
- Shrinking or wincing when touched
- Rubbing a part of the body
- Avoiding the use of a part of the body
- Curling into a fetal position
- Decreased range of motion
- Keeping eyes closed

- Vocal signs of pain, such as the following:

- Saying, “It hurts”
- Saying, “No!”
- Screaming
- Swearing
- Moaning
- Crying or whimpering
- Changing vocalization or tone
- Making repetitive sounds

- Behavioral signs of pain, such as the following:

- Resisting transfer from the bed to a chair

- Fighting attempts of team members to perform personal care

- Grabbing staff
- Refusing to eat
- Appearing restless
- Acting agitated
- Refusing to engage in preferred activities
- Having problems sleeping
- Showing anxiety
- Exhibiting mood changes

Pain assessment is necessary to determine the appropriate treatment. Care partners usually are the first to notice signs of discomfort or pain when they are dressing or changing a person with advanced dementia. They must immediately notify a nurse, who can assess the level or intensity of the pain, the location, and the potential cause.

Assessment of Pain

Pain can be acute or chronic. Acute pain is usually temporary, such as the pain associated with dental problems or a skin tear. Acute pain will cause the person to cry out, moan, or have pained facial expressions. This type of pain can be treated with any number of pain medications and usually resolves quickly. Chronic pain is ongoing. The symptoms of a chronic, dull pain are more difficult to evaluate and treat. This pain may never totally go away, but it can usually be relieved to the point where it is tolerable.

The first and simplest way to determine whether a person is in pain is to ask. First, use touch to get the person’s attention. Make eye contact and ask questions like, “Are you in pain?”, “Does anything hurt?”, or “Can you show me where it hurts?” If the person is unable to understand the meaning of the word pain or communicate the location of the pain, then a pain assessment tool is helpful.

The Pain Assessment in Advanced Dementia (PAINAD) Scale, included in Appendix F, is a useful tool for assessing pain in people with advanced dementia. This tool was developed by a team on a dementia unit of a Department of Veterans Affairs hospital in the United States. It was adapted from an assessment tool for measuring postoperative pain in young children and from a research tool for measuring discomfort. PAINAD is easy to use, objective, reliable, and valid (Warden, Hurley, & Volicer, 2003). PAINAD has now been translated into many languages; the translations can be found online.

All unresolved pain is reported to the attending physician. In the United States, if the person’s care is covered by the Medicare hospice benefit, hospice nurses are notified. Hospice nurses are specially trained in treating pain and controlling symptoms for people who have terminal illnesses. If the attending physician or hospice staff cannot alleviate the pain, the services of other professionals may be needed. For example, when the pain originates in the mouth, a dentist may be called to see the person. If pain is unresolved by routine treatments, other physicians who specialize in pain management may be called for a consultation. The nursing staff should be aggressive in their quest to make a person comfortable.

Sometimes, the person may have pain from an undiagnosed disease, such as cancer. For people with advanced dementia, testing for cancer often is not pursued because of the person’s limited life expectancy. Surgery is usually not indicated unless it is the only means of keeping the person comfortable.

Treatment of Pain

When the location and intensity of the pain have been assessed, a treatment plan is developed with the physician and documented in the person’s care plan. Treatment usually involves prescribing medications. It takes time for a medication to be effective, so the person will continue to feel pain for some time after the medication is administered. Pain medication should be titrated to a dosage that controls pain without producing significant side effects. Breakthrough pain can be treated with a pro re nata (PRN, or “as needed”) order. However, giving medications on a regular basis to prevent pain can be more beneficial than dispensing medications on a PRN basis when the pain starts.

People with advanced dementia sometimes experience difficulties taking oral medication. They may have problems swallowing, spit out the medication, “pocket” pills in their cheeks, refuse to open their mouths, or chew pills that are not supposed to be chewed. As an alternative to giving medications orally, the medication may be crushed and given with food, offered in liquid form or as a skin patch, inserted rectally, or injected intramuscularly or subcutaneously. Intravenous (IV) therapy is a last-resort method of delivering pain medication. In fact, many care homes in the United States transfer people receiving IV therapy from a dementia neighborhood to protect them from other residents who think it is helpful to remove the IV. However, moving residents to a new area of the care home separates them from the team members who know them.

If the person is free of liver disease, using nonopioid analgesics may be the first treatment choice for mild or moderate chronic pain. Acetaminophen (called paracetamol in Europe) is usually the safest and easiest way to begin treating pain unless the pain is clearly severe. Like any other medications, analgesics have benefits and risks that must be evaluated by the attending physician and side effects that must be monitored by the care team. When acetaminophen fails to provide relief, the next type of medication that can be ordered is a nonsteroidal anti-inflammatory drug (NSAID), such as ibuprofen. NSAIDs have serious side effects, including gastrointestinal irritation and bleeding, so monitoring by all staff is crucial for people who are taking these medications. Because people with advanced dementia are often unable to communicate gastrointestinal discomfort, medical staff may decide it is better to initiate an opioid medication than to start NSAIDs if acetaminophen was not effective.

Opioid medications are available to treat pain symptoms that are severe and have not been resolved by nonopioid analgesics or NSAIDs. These drugs, including codeine, fentanyl, and morphine, offer immediate relief. Morphine has fewer side effects than other medications, is effective in relieving severe pain, and can be given in small doses. It can easily be given in liquid form. Despite these benefits, morphine is a widely misunderstood drug that many physicians are reluctant to prescribe for people in care homes. Some nurses are uneasy about administering it, and families fear that it will cause their loved one to become overly sedated or addicted to the drug. Some believe that morphine will hasten death. Although it is often given to the person who is actively dying to ease breathing discomfort, morphine will not cause death when administered in prescribed doses. The most serious side effect is constipation, which can easily be resolved. The Namaste Care nursing staff should be knowledgeable about all aspects of pain medication, including over-the-counter drugs, usual doses, methods of dispensing, and the conditions under which specific medications are used.

Monitoring Pain

All team members should constantly monitor pain and discomfort. Some care homes that emphasize the importance of monitoring and controlling pain refer to pain control as the fifth vital sign. In his 1996 presidential address to the American Pain Society, Dr. James Campbell explained, “If pain were assessed with the same zeal as other vital signs, it would have a much better chance of being treated properly. We need to train doctors and nurses to treat pain as a vital sign. Quality care means that pain is measured and treated.”

Once the pain is controlled, regular monitoring according to relevant guidelines (e.g., by country, such as federal and state guidelines in the United States) helps ensure that the person is free of pain at all times.

PERSONAL CARE

The personal care provided to people with advanced dementia is critical to meeting their psychosocial needs and ensuring a good quality of life. Psychosocial aspects of care include the way residents are bathed and assisted with ADLs, how they are dressed and seated in chairs, and how meaningful activities can improve their lives.

Clothing

Comfort care includes the choice of clothing for people with advanced dementia. The simplest garments are the best because they make dressing easy. There are companies that specialize in clothing that is easy to put on and take off, such as dresses and pants with Velcro fastening. Namaste Care honors the dignity of people by ensuring they are well dressed and groomed. For people with advanced dementia, comfort is also of primary importance. Some comfortable options include slacks with stretchy waistbands, comfortable blouses and shirts that button or zip in the front, and soft sports bras or undershirts instead of traditional bras for women. Avoid garments that need to be pulled over the head. Shoes are unnecessary for a person who is no longer able to walk. One care home found it practical to order several dozen slipper socks that were soft, warm, and easy to launder. With their nonskid soles, these socks are comfortable and safe for people who need stability when transferring from a lounge chair to a wheelchair or a bed.

Shorts may not be appropriate even in the summer because people’s metabolisms change as they age, and older adults tend to be cold. Instead, consider pants with elastic waistbands and sweatpants. Families and all team members may need to be educated about the reasons for wearing comfortable clothing, as some people may feel that certain clothing is unfashionable. For instance, some care partners might feel that wearing slippers instead of shoes is undignified. They take pride in dressing people to look their best. However, it is more important for the person with advanced dementia to feel comfortable throughout the day and night. If families disagree with this approach to clothing, however, their wishes should be respected whenever possible. Some families insist that shoes are important; others do not like sweatpants. Family members may also request certain clothing items for their loved one. For instance, one resident had always loved her hat and white gloves, so her family requested those; another family requested that their loved one, a retired physician, wear a lab coat. Families’ requests should always be honored unless the request is not in the person’s best interest. In this case, the care home manager, or in the United States the social worker, may meet with the family to discuss options.

I have heard from many directors of nursing and charge nurses that when people are in Namaste Care, their grooming often improves. One theory for why this improvement happens is that, when a resident is brought into the Namaste Care room, the Namaste Carer often comments on how wonderful the person looks, which encourages care partners to ensure that people always look their best. Sadly, before the Namaste Care program, people with advanced dementia often felt “invisible” (Simard, 2007a) as they lost their ability to communicate and engage in typical activities. Namaste Care ensures that each person with advanced dementia is acknowledged and honored daily.

Oral Care

Oral care is very important for people with advanced dementia, and making this activity comfortable takes sensitivity and special patience from care partners. People with advanced dementia are usually unable to brush their own teeth and are at risk for oral infections, dental caries, and tartar buildup. The care partner should place a soft toothbrush in the person’s hand in the brushing position to see whether the individual remembers how to brush. Care partners might pantomime brushing their teeth as a memory cue. A child’s toothbrush may be easier to use than an adult’s toothbrush.

For people who are resistive to brushing, dipping a mouth swab in something sweet might help them feel more comfortable with having their teeth brushed. If care partners are aware of any new discomfort, they should report this to a nurse. If necessary, dentists are called for control of tooth pain. Extracting an infected tooth may be the only way to relieve pain.

Dentures may be uncomfortable, particularly for the person who has lost a great deal of weight. It is important to assess the benefits of dentures for a person who seems uncomfortable wearing them and takes them out regularly. Although some families may feel that their loved one appears undignified without teeth, most agree to discontinue the use of dentures if they seem to cause discomfort. In the United States, the decision to remove dentures is documented in the person’s care plan. The diet may need to be adjusted if the person is no longer able to chew with dentures.

Dining and Snacks

Care partners make dining a pleasurable experience, even if the person needs extensive cueing or can no longer eat independently. People with dementia are encouraged to eat as independently as possible for as long as possible. When people can no longer use utensils, finger foods may help them continue feeding themselves for a longer period of time. Cue the person using simple instructions, such as, “Mary, here is your spoon; let’s put some potatoes on it and you can tell me if you like them.”

Some care partners have a plate of food exactly like the person’s plate, and they model spooning up the food and putting it in their own mouths. Make sure the plate color is different from the color of the food. It can be difficult to find white potatoes on a white plate! Consultation with a dietitian may be helpful to identify the best food consistency for each person with advanced dementia.

As dementia progresses, team members must watch people closely for signs that they are pocketing food, which can lead to choking. If the person is pocketing food, physicians usually order special diets containing foods that are easy to swallow. If possible, care partners can ask families what type of “comfort food” the person prefers. In the United States, this is usually something sweet, such as ice cream, cakes, and puddings. Unless the person had diabetes, the goal is usually to consume as many calories as possible.

Helping people eat is a challenge for many care homes, as this type of care is very time consuming for care partners who have many people to assist during meals. In the United States, regulations in all states prohibit anyone from helping to feed people until completing a special education program. Assisting with meals should be a priority for all care partners. Suggestions for how to add extra hands and create a conducive atmosphere during mealtimes include the following:

- Educate administrative staff and department managers on how to assist with dining, if allowed by regulations.

- Stagger working hours so that extra hands are available in the dining room during the morning and evening meals.

- Play soft music during meals.

- Make sure care partners are talking to the people they are helping and not just to other care partners.

- Provide beverages to care partners so they feel that they are part of the dining experience. Some people with dementia still remember that it is impolite to eat in front of someone who has no food or beverage. When the care partner has a beverage, the person with dementia may feel more comfortable eating in front of them!

- Use clothing protectors that do not look like bibs, such as large linen napkins tucked under the chin, bib aprons, or barbecue aprons.

- Do not use institutional-looking meal trays.

- If possible, divide people into small groups to minimize the noise and confusion of eating in a large room. This change can be implemented inexpensively with portable privacy screens.

A meeting should be scheduled between care partners and a dietitian to brainstorm ways to make meals a more normal and comforting experience for people with advanced dementia. One useful goal is to create a more peaceful, calming atmosphere in the dining room. Many dining rooms in care homes are quite loud, with staff and residents talking. To solve this issue, one care home in the United Kingdom keeps people who need more assistance with eating in the Namaste Care room after the afternoon program has finished. Then, with the lights lowered and calming music playing, they have dinner in the Namaste Care room. The team has found that people are able to eat more independently in this environment, perhaps because of the peaceful feeling in the room.

Ambulation

Most people with advanced dementia are unable to walk, even with assistance. If possible, the person should be evaluated by a physical therapist to make sure there are no underlying physical reasons for the loss of ambulation. Team members should be educated on the correct approaches for maximizing the person’s ability to continue walking or for transferring the person from a bed to a wheelchair. Each time the person tries to move from one place to another, the care partner should encourage and praise any efforts made to help.

When people with advanced dementia are unable to safely ambulate, they often need to use a wheelchair; in some places, that is the only way they will be allowed to get out of bed. However, a regular wheelchair that does not recline may be extremely uncomfortable for people at this stage of life, who may not be able to sit upright. Each person in Namaste Care should be assessed to ensure that the most comfortable chair available is provided. Wheelchairs or lounge chairs on wheels that can be adjusted are the best choices. In the United States, geri-chairs with trays must be assessed to ensure they do not function as a restraint. People enrolled in the Medicare hospice program can receive special chairs as part of durable medical equipment coverage.

I wish the term “bedbound” would completely disappear from our medical language. Rarely does a person need to stay in bed at all times; this practice leads to isolation and does not allow for a meaningful quality of life. When I was visiting a care home in the Czech Republic, I was taken to a room where two men never left their beds except for bathing. I was told that these men did not react to any activities, so having them stay in bed was easier for the team members and supposedly didn’t make a difference to the residents in question. I do not speak Czech, but I do speak Namaste Care! I approached the bed, gently touched the first man, and introduced myself. He opened his eyes and smiled at me. Football (known as soccer in the United States) is a popular sport in the Czech Republic, and I had a ball with me. I put the football in front of the man, and he threw it to me with a huge smile! We communicated with smiles and laughter. At the end of my visit with him, I told him I had to leave and said the one word I know in Czech, Ahoj, which means hello and goodbye. I then went to the next man’s bed and got the same smiles and laughter from him upon showing the football. As I was leaving the room, I stood between both beds and once again said “Ahoj,” then blew each man a kiss. To everyone’s surprise, both men blew a kiss back to me. After the team saw their positive response to the Namaste Care approach, I was told the men would no longer have to remain in bed.

People who constantly sit in one place are at great risk for skin breakdown, so Namaste Carers must be sure to reposition people at least every 2 hours. Use pillows (consider special lavender-scented pillows) or rolled-up blankets and towels to position them in their chairs. Asking a physical therapist to assess each person with advanced dementia at least once per month is a good idea.

Bathing

Of all personal care activities, bathing produces the most anxiety in people with dementia. Bathing may be frightening, embarrassing, and bewildering. For people with joint pain or contractures, moving their limbs in the shower or tub bath can also be painful. To make bathing pleasurable, the first step is to find out information about each person’s bathing history. Does the person like tub baths or taking showers? When is the person more comfortable and relaxed—in the morning, afternoon, or evening? In many instances, the resident has lived in the care home for some time, so team members know the person’s preferences for bathing. If the person is new to the care home, families can provide this information.

Whoever is making the shower and bath schedule should know the person’s preference for bathing and then schedule the appropriate shift for that responsibility. Besides the preference for showers versus baths, what kind of music might be soothing for them to hear while bathing? Sometimes, inviting a person to sing along to some music can make bathing a fun time; the person might even forget he or she is being bathed.

Care partners must also be flexible. If a person resists bathing, other care partners can approach the person later to provide this care or leave bathing for the next shift. One care partner had a very creative approach to caring for a resident who disliked bathing.

MOLLY

No one knew how to make bathing a more pleasurable experience for Molly, a resident with advanced dementia. Finally, Molly’s care partner, Susan, tried something new one morning that worked, much to the amazement of her colleagues. Molly believed she had a real “baby,” Ann, who was by her side at all times. Team members often commented on what a good mother Molly was to Ann, which always resulted in a huge smile from Molly. Susan remembered that her grandmother once told her how mothers would always bathe and dress their children in clean clothes before a doctor’s appointment. That morning, after Molly had her breakfast, Susan reminded her that Ann had a doctor’s appointment and that they had to give her a bath before leaving for the doctor.

The care partner had prepared the shower room with a basin filled with warm water and had clean clothes ready for Ann. After they bathed and dressed Ann, Susan reminded Molly that she also had a doctor’s appointment and must take her bath now so they would not be late. Molly took her bath with no resistance and was dressed in her clean clothes. Susan then wheeled Molly and Ann to the Namaste Care room, where they would wait until the taxi arrived to take them to the doctor. Very quickly, Molly forgot about the “doctor’s appointment” and enjoyed the rest of the morning’s activities with Ann. Susan passed on this creative solution to other care partners.

Modesty is often valued by the generation of residents in most care homes at the time of this writing, so many people will feel uncomfortable without any clothing. If possible, care partners should take the person to the bathing area clothed or wearing a bathrobe. If the bathtub is an older model with a lift, hold the person’s hand during transfer to the tub, as being lifted can be a frightening experience. Ways to distract and comfort people while on the lift include offering bits of soft candy or playing their favorite music loud enough to hear. Bathtubs that gradually fill and are easy to enter are the best option. Care partners should have enough towels available to keep the person covered if necessary, especially if the person gets upset when naked in front of a “stranger.” Float a towel on the water to cover the person’s nakedness, or have the resident wear a hospital gown during the bath.

Care partners can also make bathing easier by talking to the person throughout the bathing sequence. In a soothing voice, care partners can explain each step of the bath and ask for the person’s help. For example, the care partner can ask a resident to hold the soap and then thank the person. Make sure residents do not try to eat the soap. Try to help the person remember bathing as a familiar routine. Another approach is to talk about everything but the bath to distract the person from the bathing experience.

Large shower heads designed to create the feeling of a gentle rain can make showers less traumatic. Handheld shower heads are also good to use because they give the person some control over the direction of the spray. As mentioned above, another way to reduce anxiety and increase comfort is to play music during the bath or shower. Battery-powered radios are safer than plug-in electrical appliances in the bathing area. It can also be helpful to ensure the room is warm.

After the bath, care partners should apply lotion to the person’s body and offer a back rub. One creative care partner told the resident that there was usually a charge for a back rub, but that this one was free because the person was so nice. Another calming technique to consider is warming a blanket in a microwave oven and wrapping it around the person after bathing.

With a bit of creativity, taking a bath or shower can be comfortable even for people who adamantly resist bathing. When a person who is usually resistive enjoys the bath, the care partner should communicate effective techniques to other care partners. Share all successes!

Namaste Care Bed Baths

Bed baths are often the preferred bathing method for people with advanced dementia who are resistive to tub baths or showers, are ill, have extreme joint pain, or are actively dying. Bed baths are comfortable and are given in the privacy of the person’s room. Bed baths were a good option for Sam, a resident who refused and resisted all attempts to bathe him.

SAM

Sam was impossible to bathe. He did not recognize his wife of many years, and he did not want this “stranger” to assist him in the tub or shower. He lived at home and was no more cooperative with home health aides who attempted to bathe him. His wife was at her wit’s end until she realized that her husband was a very sound sleeper, and she could wash about a third of his body before he woke up. Giving a complete bed bath took some time, but eventually he was completely washed! When Sam was admitted to a care home, she passed this information to the care partners. They followed his wife’s example and washed as much as possible before Sam woke up.

A Namaste Care bed bath uses the two principles of Namaste Care: a calm environment and a loving-touch approach to all interactions. To give a Namaste Care bed bath, care partners must gather all necessary supplies, including soap, two basins of warm water (one for washing and one for rinsing), face cloths, towels, lotion, and dry shampoo. Clean clothing and personal-grooming items, such as moisturizer, combs, and brushes, are also good to have available, as the care partner should not leave the room once the bathing has started. Playing music the person likes and making sure the room is warm help to make the environment cozy and the experience soothing. The Namaste Care bed bath proves that bathing can be a pleasant experience—it just takes a bit of ingenuity.

MEDICAL DECISIONS

The medical considerations and treatment approaches discussed next are drawn from studies of people with advanced dementia who are living in U.S. care homes. The Namaste Care philosophy supports medical decisions that are aligned with comfort care.

Cardiopulmonary Resuscitation

Initiating CPR on a person with advanced dementia is burdensome and rarely successful. The numerous complications of this treatment include fractured ribs, admission to a hospital’s intensive care unit (ICU), and placement on a mechanical respirator (Volicer, 2013). The ICU is especially frightening to those with dementia, and most people admitted to the ICU will need to be sedated.

Hospitalization

Hospitalizing nursing home residents with advanced dementia is ill advised. Unless the person cannot be treated comfortably in the care home, transfer to an acute care center often leads to a decline in the ability to transfer, increased risk of decubitus ulcers, and weight loss (Volicer, McKee, & Hewitt, 2001). Many nursing home residents who are hospitalized return to the care home with pressure ulcers and indwelling catheters, and they often are taking significantly more medications.

In the United States, from the moment the ambulance crew arrives at the care home, the person with advanced dementia is plunged into a world that is alien and terrifying. Upon arrival at the hospital, the person usually spends time in the emergency department. A variety of tests, which are confusing and occasionally painful, terrify a person who cannot comprehend the reason for these procedures. More often than not, the person is then transported back to the care home. If admitted to the hospital, the person’s anxiety intensifies.

Acute care staff are not as familiar with the needs of people with advanced dementia as are team members in the care home. People with advanced dementia are unable to understand that they cannot get out of bed without assistance and do not comprehend the purpose of items like catheters and IV tubes; many times, they must be restrained or sedated to keep these interventions in place. Pressure ulcers are a danger for people who are frail and are restrained in their beds for long periods of time. People with advanced dementia need to be hand-fed and coaxed into eating, a time-consuming task for hospital staff. They also need to be offered liquid several times per day because they are unable to drink independently.

Many people return to the care home taking more psychoactive drugs because the hospital often prescribes medications like antipsychotics and benzodiazepines to manage confusion or distress. People with dementia may also be given medications for sleep. All of these medications can produce dry mouth, constipation, and lethargy, among other dangerous side effects.

When they are in the acute care setting, people with advanced dementia might experience unpleasant medical diagnostic procedures, such as blood tests, x-rays, and computed tomography scans.

When considering whether to hospitalize a person, the burdens and benefits of all diagnostic and treatment procedures must be evaluated. Will the person’s life be more comfortable as a result of the hospitalization or the procedure? For example, if a person with advanced dementia breaks a hip, the family or POA must decide whether the hip should be surgically repaired, considering the person’s status and quality of life. Perhaps this person has not walked for some time and probably will not walk again. The team may consider whether the hip might heal on its own with bedrest and appropriate pain medication. Rather than their loved one undergoing an invasive procedure and a prolonged hospital stay, the family might prefer that the person rest comfortably in a familiar bed or in a reclining chair in the Namaste Care room. It is important to remind families that decisions can be changed at any time.

Tube Feeding

Decisions about tube feeding are emotionally charged and culturally sensitive. The prevalence of tube feeding in persons with advanced dementia is variable depending on spiritual and cultural beliefs related to end-of-life care and death. In the United States, the prevalence varies widely according to state.

The pros and cons of this procedure must be considered before a feeding tube is inserted. There is evidence that feeding with a nasogastric (NG) tube or through a percutaneous endoscopic gastrostomy (PEG) tube does not have any advantage for a person with advanced dementia. Tube feeding does not prolong life, and it does not prevent aspiration pneumonia and may actually increase its risk (Finucane, Christmas, & Travis, 1999). Also, the belief that tube feeding will lower the risk of pressure ulcers and infection has been disproved (Teno et al., 2012). The procedure to insert a feeding tube is uncomfortable and can be dangerous.

An NG tube can be inserted by a nurse. Because NG tubes are uncomfortable, people are often restrained or have mitts placed on their hands so they will not pull out the tube. In a study of patients who were alert and oriented and who had recovered from a stay in the ICU, tube feeding was found to be the most uncomfortable procedure that the patients encountered—more uncomfortable than being attached to a ventilator. Being restrained was third on the list of uncomfortable procedures (Morrison et al., 1998).

A PEG tube must be inserted by a specialty physician and requires hospitalization and surgery with anesthesia. Evaluation for a PEG tube insertion may involve consultation with a speech therapist to document that food is not entering the lungs, as well as the services of an x-ray technician and radiologist to determine swallowing capabilities. This test requires swallowing barium, something the person with advanced dementia may be unable to do. As with any surgery, there are risks inherent in the procedure, including infection and increased confusion from the anesthetic.

Antidepressant medications might be an alternative to tube feeding for people who can still swallow but have stopped eating. Refusal of food may also be a conscious wish of a person who can no longer communicate verbally (Volicer, 2013). We honor the people in our care by not forcing them to eat or drink. However, many people can be encouraged with beverages and small amounts of preferred food, such as orange slices, chocolate, and lollipops, until they begin to actively die. The enjoyment of food may be one of the last pleasures that people with advanced dementia experience in their lives, which is why offering foods and beverages is a staple of Namaste Care.

The following story describes how a family member was able to feel more comfortable about keeping his mother in the care home rather than hospitalizing her for hydration therapy.

JULIA

Nathan was recently divorced and retired, and he had little to do except focus on caring for his mother, Julia. He visited her at the care home every day. Clearly, he was devoted to her and was stricken with grief that her dementia had progressed and she was nearing the end of life. Julia slept most of the time, and getting her to eat or drink anything was a miracle. During his visits, usually at lunch, Nathan would become either elated that she ate or drank something or very frustrated when she refused all his attempts to feed her. He often had her hospitalized for hydration therapy when she refused to eat and drink. Nathan told me that he felt he had to do something; he could not let his mother starve. His mother’s physician discouraged him from having a feeding tube inserted but did agree to hospitalize Julia for hydration therapy.

The day Namaste Care began, Julia was sleeping in her wheelchair. When I approached her to say hello, I observed black-and-blue marks all over her arms. Alarmed, I was informed by the staff that Julia had once again spent a few days in the hospital for IV therapy. The places where the needles had been inserted and where the restraints had been secured were bruised. Julia had pulled out the IV without the restraints, but her skin was fragile and tore easily. Even a small amount of pressure could cause skin discoloration and abrasions. It was heartbreaking to see the marks on this tiny woman.

Julia was transported to the Namaste Care room, moved from her wheelchair into a reclining lounge chair, and wrapped in a soft quilt. Small pillows were positioned under her arms, and a lollipop was offered to her. She opened her eyes and smiled when she tasted the sweetness, sucking greedily on the lollipop. We had our first success story!

Julia’s son arrived shortly after the room opened and was frantic when he could not find his mother in her usual place in the lounge. The team members led him to the Namaste Care room, where soft music was playing; the scent of lavender was in the air; and his mother, very comfortable in the lounge chair, was sucking on her lollipop, eyes open and twinkling with delight.

Nathan started to cry. I panicked. What had we done wrong? He said that it had been so long since he had seen his mother so happy and comfortable. He began to tell me how awful he felt seeing his mother in the hospital—about the ambulance ride, painful testing, and the restraints needed to keep her from pulling out the IV. We talked about how difficult it was for him to let go of his mother. He asked whether she could be in Namaste Care every day. When told yes, he went to the nurses’ station and asked them not to hospitalize his mother anymore. He could see how comfortable his mother was and wanted her to stay with the staff who knew and loved her. She died a few weeks later, and Nathan said he was at peace knowing that her last days were spent in the arms of the Namaste Carer.

Treatment of Infections

Every care home has infection-control procedures that must be followed. Infections are the most common complication for people with advanced dementia, with respiratory infections and urinary tract infections the most frequent. Although infections are routinely treated in people with mild dementia, when the person still has years of high-quality life ahead, once the dementia becomes advanced, the family and physician should discuss whether antibiotics should still be used. If comfort is the main concern, then over-the-counter fever medication and/or morphine may be the treatments of choice.

Pneumonia is a common infection in people with dementia. Studies have shown that people with advanced dementia treated in the care home lose less of their functions and are as likely to survive pneumonia as those who are treated in the hospital (Fried, Gillick, & Lipsitz, 1995). Urinary tract infections can also be treated with comfort measures in the nursing facility.

People with advanced dementia are unable to report early symptoms of infection and sometimes do not run a fever, which is usually one of the easiest ways to identify infections. By the time they do show signs of infection, the severity of the infection can make it difficult to cure. If antibiotics are prescribed, a diagnostic workup is needed. This could involve blood tests, x-rays, catheterization, or other uncomfortable procedures. All these diagnostic procedures should be explained to family members so they can make informed decisions. Antibiotics also have side effects, such as nausea and diarrhea (including Clostridium difficile infections), that would decrease the person’s comfort. Many times, people with dementia can be made comfortable without antibiotics, and the simplest treatment may be the best. This was the case for James, one resident with advanced dementia who developed an infection.

JAMES

James had almost stopped eating and drinking. He weighed less than 100 pounds. All of his needs were being met by staff; he was unable to speak, needed total care for his ADLs, was non-ambulatory, and could be out of bed only for short periods of time because he was at high risk for skin breakdown. He began to show signs of a respiratory illness, probably pneumonia, the nurses thought. The physician ordered x-rays, and James was treated with antibiotics and given an oxygen mask. Despite his frailty, James made it very clear that he did not want the mask on his face. His small hands pulled and tugged at it until he was able to get it off. James was definitely communicating his discomfort.

The Namaste Care nurse assessed his behavior and evaluated the effectiveness of the uncomfortable mask. The physician agreed that comfort was the goal and discontinued the order for oxygen. James went back to bed and went peacefully to sleep. He survived pneumonia on his own terms.

As the story of James illustrates, team members must carefully listen to and watch people who communicate with body language when verbal communication is no longer possible. Team members then share their observations during meetings and in the resident’s interdisciplinary care plan.

Care Plans

In all countries where I have worked or spoken about Namaste Care, some form of care planning is part of the services that care organizations offer. The interdisciplinary care team schedules care plan meetings to inform families about potential medical issues that are associated with Alzheimer’s disease and other dementias and to help them make decisions about the goals of care. These goals change as the person’s dementia progresses. Hospitalization, as discussed above, is an example of a care decision that requires careful consideration based on goals. Hospitalization might be avoided, for instance, when the person has moderate dementia, as the goal of care is to maintain function. With advanced dementia, the goal is comfort, so the burdens associated with hospitalization also usually outweigh the benefits during this stage.

Care plan meetings are held on a regular basis in U.S. care homes according to federal and state regulations and take place whenever a significant change of condition is noted. The care home must inform family members of the date and time of the conference and place a copy of the notification letter in the person’s medical record. If the family does not attend the meeting, someone on the care planning team should call the family to discuss the care plan or review the plan during the family’s visits. Namaste Care team members should attempt to involve as many family members as possible in the discussion of the care plan and goals of care so that the family understands and supports the interdisciplinary team. Some suggestions for getting families to attend meetings include the following:

- Schedule meetings when the majority of family members can attend. Be flexible enough to schedule a meeting on the weekend if that is the only time when most family members can attend.

- Involve family members who are unable to come to the care home by using telephone or Internet conference calling.

- Use email to connect with family members, ensuring that privacy regulations are met.

Meetings with families help to build strong connections between family members, department managers, and team members. Be sure to schedule enough time for the meeting so that family members can talk about their feelings and team members can discuss future care decisions that may arise. Planning for these decisions in advance will give the family time to consider the various treatment issues.

Nursing Procedures

In the United States, care homes have regulations that require certain nursing tasks, such as weighing people, monitoring blood-pressure readings, taking temperatures, and measuring pulse and respiration rates. However, some of these procedures may be changed for the comfort of the person with advanced dementia. Under physician orders and federal and state regulations, the number of times these tasks are done may be changed. Taking a person’s weight, for instance, may be unnecessary when the family and physician decide not to use tube feeding or any other intervention when the person is refusing food. Instead, the upper arm or thigh could be measured; this is a more comfortable procedure than weighing. If the physician and family decide to change routine nursing procedures, the person’s care plan must be changed.

Medications

Medications may have unpleasant side effects. At a certain point, medications for chronic conditions may be discontinued in persons with advanced dementia. Vitamins and medications for lowering cholesterol levels or for slowing the progression of Alzheimer’s disease have limited effectiveness and are not indicated at this time unless they are used for the person’s comfort. Medications that are used as part of comfort care, such as those to alleviate joint pain or discomfort from arthritis, are always indicated. To maintain quality of life until the end of life, eliminating pain and discomfort must be a top priority, as emphasized in the Namaste Care approach.

When people are comfortable, team members and families feel better. Family members feel more comfortable about visiting their loved ones and are less anxious when they leave the person. This was true for Celia, who wanted the best quality of life for Matthew until the very end.

MATTHEW’S STORY

Matthew’s family chose to discontinue hospitalizations and not to pursue tube feeding when he no longer wanted to eat. Celia and the Namaste Carers could tempt Matthew with sweets that produced looks of pleasure on his face. They recognized that the end was near and decided to keep him comfortable and avoid aggressive medical interventions. Matthew’s family wanted him to die as he had lived, with dignity and surrounded by people he loved.

Matthew’s comfort was very important to Celia. She visited several times each week and said that it was so much easier to leave him when he was comfortable and in no apparent distress. His half of the room was decorated with pictures of their five children and numerous grandchildren. Celia also bought a quilt for his bed.

Showers had always been Matthew’s preferred method of bathing, and staff usually had no trouble bathing him when they showed him Celia’s picture and reminded him that he had a date with her. As Matthew became less and less verbal, his care partners learned to read his nonverbal communication and kept him comfortable. He never appeared to be in pain, but staff members constantly monitored him. Matthew was dressed in clothing that was comfortable and warm. His family was reassured that he was at ease in his surroundings, which comforted his wife and children as they faced the loss of their beloved husband and father. They knew that he was in the capable hands of the Namaste Care team members.

CHAPTER 9

Making the Transition

Death is not the opposite of life but a part of it.

HARUKI MURAKAMI

I have been in the long-term care industry for more than 40 years and have made friends with many people who are no longer with us. So, it was an interesting and very personal experience for me to write this chapter and revisit these friends. Many of their stories and my memories of each person came spilling out of my heart as I wrote, and I thank these people for helping to make this chapter live. This chapter describes ways to ensure a supported, peaceful death for the person who is making what I call a “transition,” as well as for family, friends, and all team members in a care organization.

MAKING THE DYING TRANSITION AS PEACEFUL AS POSSIBLE

Most people want to have a “good death,” but it is difficult to define what that means because people’s end-of-life wishes are very personal and individualized. Most people would agree that a good death is free of pain, yet even this is a personal choice. As an example, my father, Emile Simard, chose to have pain so he would be awake and could still enjoy visiting with his friends who came to say goodbye as he was dying in his hospital room. The hospital staff provided food and beverages. My father had been in many music shows, so music from those shows was playing. We had a party celebrating his life while he was still alive!

Attitudes and Trends Associated with End-of-Life Care

Years ago, care of the sick and dying was the duty of families. Death took place at home with relatives, who were also the primary caregivers. Family members often prepared the body after death. People knew and understood that this was one of their responsibilities. Just as they assisted with the birthing of new babies, they also cared for the dying.

In large countries like the United States, end-of-life care has shifted, with families less able to care for their loved ones. The United States is a mobile society, with many adult children and other family members living great distances from their loved ones and unavailable to be with them during the dying transition. Some people do not have family members available to help provide care, such as single older adults, older couples who do not have children or extended family, or people who outlive family and friends.

Most people would prefer to die in their home; however, that is often not what occurs. In 2011, data from several countries show that a significant percentage of people die in the hospital: 51% in Germany, 60% in Canada, and 49% in the United Kingdom. In 2018, 31.4% of people in the United States died at home (QuickStats, 2020).

The Namaste Care approach supports a peaceful death wherever people are living: in their own home, a care home, or a hospice inpatient home. Transferring people who are actively dying to a hospital will not change the outcome. In fact, the trauma of moving a person to a hospital may hasten the death. If a care organization is where a person lives, it is his or her home, and the staff have become like family. Namaste Care team members are skilled at providing palliative care during each person’s dying transition.

Namaste Care During the Dying Process

The Namaste Care Individual Program supports a peaceful, dignified dying transition for all people. During the dying process, the person is free of pain and, whenever possible, in the presence of others. One of the first signs of impending death may be a lack of response to activities that the person previously enjoyed in the Namaste Care Group Program. At the end of life, people are usually more comfortable in their own rooms as they prepare for their transition. Namaste Care is brought to the bedside through the Namaste Care Individual Program. During this last stage of life, the person may be difficult to arouse. Namaste Carers and team members then shift their focus from the individual program activities to providing end-of-life care for the dying person and grief support for the family.

The person’s room is made to look as homey and comfortable as possible. During this time, a quiet environment is ideal. When the person lives in a shared room, closing the privacy curtains will offer some seclusion. Playing music or spraying the scent of lavender on fabric helps to create an atmosphere of peace. If possible, and with the family’s permission, the roommate might agree to move to an empty bed in another room while the person is making the transition. Family and friends can then be alone with their loved one during this time. Namaste Care staff are crucial in creating this peaceful, quiet space. Efforts from dedicated team members like Mary Kirk help ensure that the person’s wishes are upheld during the dying transition.

MARY KIRK

During my time as a consultant in U.S. care homes, I had the pleasure of working with Mary Kirk, who served as a social worker in a care home located in Brewster, Massachusetts. A man who was dying talked to Mary about his wishes during this transition. He did not express a fear of death but told her that he wanted to die with his wife next to him and his beloved dog on the bed. He had a roommate who agreed to move to an empty bed in another room so his wife could be with him day and night. The dog was a challenge, as the couple would be unable to walk their pet every few hours. Mary met with the team members and asked them if they would be willing to support this resident’s dying wishes by helping with the dog. They all agreed and even made a “care plan” for the dog that scheduled walks and assigned pet care to different team members. A day later, the man died with his wife holding his hand and the dog snuggled next to him.

When the dying process begins, team members remove whatever medical equipment is no longer needed from the room. They may make the bed with comfortable sheets and a colorful comforter or quilt. Occasionally, people who are dying may have a slight fever, and a sheet is the only covering they can bear. Flowers on the night table and family pictures distributed around the room are also pleasant touches. One care home showed me a room for a resident who was actively dying. Along the bed rail was a poster collage of family pictures and drawings that had been arranged by one of his granddaughters. She wanted to do something for her grandfather, and this was her final gift to him.

If the resident is religious or spiritual, appropriate religious symbols are placed in the room. For example, a Catholic family might appreciate having a rosary placed in the person’s hands, and Jewish hymns, or zemiroth, may be comforting for someone of that faith. If a Namaste Care cart is available, it will contain a music player and music, religious items, massage lotions, and a variety of scents. Each cart also has a book that describes how to recognize the signs of death.

Many professionals and advocates in the field of end-of-life care advocate for providing a comfortable environment for people during the dying transition. Loretta Downs, founder of Chrysalis End-of-Life Inspirations, believes that the dying process is a natural and sacred time of life. She also recommends that whenever possible, a private and comfortable space is provided for people and their families during the transition. This gives the family a way to find serenity and peace as they share the transformative experience of dying. For Chrysalis End-of-Life Inspirations, these spaces are called Chrysalis rooms (http://endoflifeinspirations.com/). Following this approach, care homes that offer Namaste Care are encouraged to designate a private room that can be reserved for people who are actively dying.

The Reagan Room and Millie’s Room

Families will never forget their loved one’s passing, so team members should do everything to make this memory as positive and serene as possible. The Reagan Room, first established in the Vermont Veterans’ Home, is an example of a private, peaceful room for residents who are actively dying (see Chapter 6). EPOCH Senior Healthcare, located in Norton, Massachusetts, designated a similar private room for this purpose, called “Millie’s Room.” This room became available after the death of a beloved resident named Millie, who had lived in that room for many years. With approval from the administrator, the room was named “Millie’s Room,” and, whenever possible, residents and their families were offered this private and very peaceful room during the dying transition.

Care homes without a designated private room for the dying process can still take steps to create a peaceful, sacred environment during this time in a person’s life. In one care home, a staff member places a silk monarch butterfly on the door of the room to alert team members that someone in the room has reached the final stage of life. The intent is not to discourage anyone from coming into the room; as a matter of fact, the butterfly alerts all team members that it is time to say their final goodbyes. Staff may also spend a moment asking family members whether they need anything. A family member once told me how much she appreciated the butterfly so that she would know when another family member might need a hug and expressions of support.

SIGNS OF ACTIVE DYING

Namaste Care continues to honor the spirit within as the person begins to actively die. The main focus is to maintain comfort. All team members and the person’s family and friends are educated to recognize signs of pain and discomfort (see PAINAD Scale, Appendix F).

In a care home, nurses are usually the first to recognize when a person is actively dying. The team is often alerted by a care partner who has observed a significant decline in the person’s physical status or has an inner sense that the dying process has begun. Once this process has begun, people may experience a significant decrease in their functional status. These are some of the signs that a person is actively dying:

- Breathing changes, such as breathing that is more shallow and slow

- A “rattle” that develops as the person is breathing

- Skin that feels cool to the touch and may looked discolored

- Inability to turn in bed without assistance

- Urinary incontinence and inability to control bowel function

- Difficulty arousing the person

- No hunger, with the person eating and drinking very little or not at all

- Inability to focus and possibly a glazed appearance to the eyes

- Developing a fever

- Signs of restlessness (e.g., picking at the blanket, reaching out as if wanting to touch something or someone)

- Garbled speech when trying to talk

When the signs of active dying are noted, ideally all medical interventions have been stopped and the person is receiving palliative care. Diagnostic testing, such as urinalysis, blood tests, or x-rays, are not appropriate at this time because these procedures are uncomfortable and will not affect the outcome. Most medications should also be discontinued unless they are used for comfort. Oxygen may be used to help with breathing, but it is important to monitor for any signs of discomfort in the nasal cannula.

Decreased Appetite

When the person is actively dying, the need or desire for food diminishes significantly. It is believed that this is the body’s way of protecting itself. Without food, there is no danger of choking or vomiting. When the person stops eating, endorphins are released that reduce pain. Feeding tubes and hydration block the release of these endorphins and can lead to discomfort. For several days or hours before the actual death, the person often refuses all offers of food or beverages. Withdrawing from food and liquid is part of how the body naturally prepares for the transition from life to death.

During this time, the person’s lips and mouth might look parched. Care partners and the patient’s family can help moisturize the mouth and the lips by using swabs that contain lemon glycerin or another moisturizing agent. Ice chips placed below the tongue or in the cheek and artificial saliva may also be used to provide moisture in the mouth. A less medical approach might be to soften a lollipop in water and brush it on the person’s lips. One woman told me that one of her last memories of her mother was seeing her smile as she tasted this sweet confection. Another woman told me that she was using a swab with some type of lubricant when she looked at the clock and remembered that her mother always had a glass of sherry around this time. As soon as the staff heard this, they went to the chef and asked if he had any cooking sherry. He did, so the daughter gave her mother sherry as she was making her transition, honoring what had been an important tradition in her life.

It appears that cold and sweet-tasting foods continue to be pleasurable at the end of life, so a small spoonful of soft ice cream may still be enjoyable for the person and will help moisten the lips and tongue. Care partners and family members should watch the person’s facial expressions to determine whether any of these measures to provide food or liquid are uncomfortable. At this point, the goal is to provide comfort and pleasure, and “honoring the spirit within” includes respecting the right to refuse eating or drinking.

Families and team members often believe that they should be doing something and may feel helpless when the person refuses offerings of food. However, taking action is often less important to people who are dying than it is to their care partners and family members. Bill Thomas, founder of the Eden Alternative, speaks of the difference between doing and being, and how hard it is for most of us just to “be.” Those who are observing the dying process can simply be beside the person. They can be present with all their energy, and that is enough (B. Thomas, personal communication).

Lethargy

As dementia progresses, the person becomes increasingly lethargic, sleeping for longer periods of time. At the end of life, it will be difficult if not impossible to arouse the person. Although people with advanced dementia will sleep most of the time during their final days, team members, families, and volunteers can read to them, play music they enjoyed in the past, and just be present. Team members and families are advised to always talk as if the person can hear them, as hearing is the last sense to leave the body.

Skin Changes

As the body’s functioning begins to cease, the heart rate may become rapid or may decrease significantly. The surface of the skin becomes cool and moist. Skin color begins to disappear until the skin appears almost transparent. The circulation of blood in the body is slowing, impairing the flow to the hands and feet. As a result, the hands, nail beds, and feet begin to get cyanotic, turning bluish or becoming mottled or blotchy. These are natural signs of impending death that can be frightening for the family. It is helpful to tuck soft, warm blankets or sheets around the person for comfort if an individual appears to be cold. I have used a hair dryer to warm the blankets, towels, gowns, and socks, but I do this in another room because the hair dryer is noisy. Other ways to promote comfort include putting soft socks on the person’s feet and gently rubbing warm lotion or baby oil on the skin.

Fever

Occasionally, a person will have a fever during the dying process. Fever may be caused by dehydration or an infection. The fever can be controlled with medication if the person appears uncomfortable. The person should be observed closely to monitor pain and discomfort.

Although it may be difficult to administer medication when someone is actively dying, medication may be given rectally or in liquid form if the person can still swallow. The best treatment for fever may be applying a cool (not cold) face cloth on the person’s face and limbs. If a fever is present, care partners should watch for it to break, as the bed linens might become damp at that time and need to be changed.

Decreased Kidney Function and Incontinence

As the person’s body shuts down, the kidneys begin to cease normal functioning, and less urine is produced. In addition to decreased urine output, the color of urine is darker. People will usually have no bladder or bowel control during the dying process, so they may be constantly leaking urine and feces. Even a small amount of urine or feces will make the skin tender, so the skin should be checked frequently to ensure it is clean and lubricated. There is no need for a catheter at this point.

Restlessness

Restlessness can be part of the dying process or an indication of pain or discomfort. Nursing staff should assess these symptoms and communicate observations to the physician. The caring touch and comforting presence of loved ones can help to calm the restlessness, and at times, medication may be indicated. I recently witnessed all of these measures with a close friend who was dying. My friend’s husband would text me when his wife became restless, picking at the blankets and seemingly reaching for something. She would speak, but her words were garbled. I would go to their home and sit next to my friend, who was in a hospital bed. I would touch her and say my name. Often, she would open her eyes and smile at me, then go back to sleep. I used lavender spray on her bedding, and the first day I did this, I sprayed a tissue and held it under her nose. She opened her eyes, smiled, and said, “lavender.” Then, I would gently stroke her arms with lotion and speak lovingly to her. Usually, within 5 minutes she would relax, stop reaching out, and fall into a deep, peaceful sleep.

I was able to provide this comfort to my friend almost every day for 2 weeks. When she began to show signs that she was at the end of life, the restlessness returned, and I could not calm her with hand and arm massages. Hospice nurses prescribed anti-anxiety medication, and she died peacefully a few days later.

Breathing Changes

The respiratory system begins to shut down as the person approaches the final hours of life. Breathing may become labored. Most people with Alzheimer’s disease die of pneumonia. Although the process may not be painful for them, it is very painful for the family to watch as their loved one struggles to breathe and experiences fits of coughing. Morphine in low doses can ease these problems and will not hasten death. Oxygen administered by a nasal cannula can also ease breathing, but as mentioned previously, it is important to monitor for signs of discomfort caused by this device.

Loose secretions in the chest are another symptom of impending death. These secretions are not painful to the person, but the rasping or rattling they cause during breathing can be upsetting for families to hear. Placing people on their side may help the fluid drain naturally. The natural dehydration that occurs is actually helpful in preventing fluid buildup. Avoid suctioning; it is uncomfortable and does not have any lasting benefit for the person; it is not part of the Namaste Care approach. Remember that families will need constant reassurance that their loved one is not suffering, even though it may appear as if the person is experiencing discomfort. Sometimes playing soft music helps to mask these distressing sounds.

In the last few hours or minutes of life, breathing is very irregular and may even stop for short periods of time. This pattern is called Cheyne–Stokes breathing and is normal at the end of life. Just waiting to see whether the person will resume breathing is an agonizing end to a difficult journey for the family. It may be helpful to the family to have someone else present at this time.

Because family members may need to feel useful, give concrete suggestions and encouragement on how they might provide comfort, such as by reading from a religious or spiritual book (e.g., the Bible) or holding their loved one’s hands. Team members should constantly remind families of the importance of being physically close to their loved ones, and holding hands is a loving connection. Sometimes family members will want to lie next to their loved ones, a caring touch that easily communicates love when words fail.

When the signs of impending death appear, families may become frightened. Family members are alarmed when they see the changes in the body and do not understand that they are observing the natural process of dying. Team members should help families understand these physical changes and reassure them that dying is not painful.

DEVELOPING A NAMASTE CARE PROTOCOL FOR RESIDENTS WHO ARE ACTIVELY DYING

When nursing staff recognize that a person is actively dying, they may follow a Namaste Care protocol. This section includes a sample protocol developed for nursing homes in the United States. Each care home providing Namaste Care should develop its own protocol according to the regulations and cultural considerations of the country where the organization is located. The protocol might include these or similar steps:

- When a resident is actively dying, the nurse in charge of the neighborhood informs the physician of the person’s status and asks for comfort care orders. These may include orders not to hospitalize and not to resuscitate as well as orders for oxygen to assist breathing and morphine or other medications to ease discomfort. Ideally, these orders will already be in place and documented in the person’s medical record.

- Family members are notified of their loved one’s declining condition by the charge nurse or social worker. If the care home has a private room available, such as the Reagan Room, the family is asked whether they would like to move the person to this room. The family should be informed that if their loved one recovers from this episode, the person will be returned to the original room.

- A butterfly or some other symbol is placed on the door to communicate that someone is actively dying in the room.

- When the person is receiving hospice care, staff notify the hospice nurse so they can jointly plan to call the physician and the family. The hospice staff and Namaste Care nursing staff must coordinate and plan for this communication so that families are not confused by calls from both the care home and the hospice organization.

- With the family’s permission, the resident’s roommate may be advised of the situation. In some cases, the roommate’s family will be informed, especially if they visit often, so they will not be surprised when they come into the room.

- If a private room like the Reagan Room is used, housekeeping is notified to ensure the room is readied for the person’s arrival.

- Before the move, personal pictures are placed around the room, and soft music is played to welcome the person.

- Often, plants or flowers can be “borrowed” from somewhere in the care home to help create the calming, peaceful environment in the room; these may be placed on the nightstand or bureau.

- If the person is transferred to another room, the business office and nursing department must be notified. In the United States, regulations state that the person’s name must be posted outside the room. Bookkeeping records must also be kept current.

- Any medical equipment needed to make the person more comfortable is brought into the room. Oxygen and personal supplies, such as mouth swabs, face cloths, towels, and basins, are stocked out of sight whenever possible. Sometimes, a colorful towel is placed over the supplies so the room looks less like a hospital room.

- The family is asked whether anyone else should be contacted, such as a close friend or clergy member.

- If a chaplain or religious leaders (e.g., a priest, minister, or rabbi) are in the care home, they are notified that a person is dying and are asked to offer consolation to family members. The family may want to have a special clergy member contacted, which would usually be handled in the United States by the social worker. If the person is receiving hospice services, the hospice chaplain may be notified by the hospice nurse.

- The dietary department is notified so that soft ice cream, juices, ice chips, and other beverages can be made available if the person is still able to swallow. The dietary department also provides beverages and meals for the family and visitors.

- Social work staff are notified so that they can be available for family members.

Religious Beliefs, Traditions, and Culture

Before a person reaches the last stage of life, the family should be asked about their loved one’s religious and cultural beliefs and what they feel is important to the person. Religious and cultural choices are to be respected at this time. Because dying often occurs at night, when the social worker is not available, information about the person’s cultural and spiritual needs should be communicated to nursing staff.

The Namaste Care cart is stocked with various religious and cultural items, including music, scriptures, and prayers for many faiths. Team members strive to honor the person’s specific faith traditions related to dying. Here are just a couple of examples of rituals or traditions associated with different faiths:

- When the nursing staff determine that someone of the Jewish faith is dying, consider calling a rabbi if the family has not done so. The bedside vigil, in which others keep watch over a person who is dying, is a Jewish tradition. Many Jewish communities arrange for people who understand Jewish dying and after-death rituals to be present at the bedside.

- Catholics receive the Anointing of the Sick, formerly called Last Rites or Extreme Unction. When a practicing Catholic is actively dying, nursing staff should call a priest to perform this sacrament.

In the Presence of Others

David Kessler wrote about “walking people to the gate,” reminiscent of times past when it was commonplace for travelers to be accompanied to their departure gate at the train station, bus station, or airport. They could wave goodbye and give a parting hug or kiss to their loved ones. When families stay by their loved one’s side until the dying transition is complete, they might visualize this as “walking the person to the gate.” A goal of Namaste Care is to ensure that all people depart this life in the presence of others.

Many studies have revealed that older adults do not fear death but do not want to die alone or in pain (MetLife Mature Market Institute, 2011). A study in Great Britain also found that the greatest fear about dying was not the death itself but the idea of dying alone (Dignity in Dying, 2008). The challenge is ensuring that all people are supported by others during the dying transition. Although some families want to know when the end is near so they can be with their loved ones, others cannot bear to see the person die. Some people have outlived their family members, or their families are unable to get to the care home before the person makes the transition. Most care homes would like to provide someone to be with each person who is actively dying. However, with the growing need for more staff to care for people with advanced dementia, it is often not possible to have a team member sit by the bedside of someone who is actively dying. Several initiatives and approaches, including the Namaste Care approach, are committed to addressing this challenge and ensuring that people can complete the dying transition in the presence of others.

In the United States, Deanna Cochran is a leading voice in the grassroots movement for “dying well.” She has created an organization, CareDoula, that trains and certifies people to provide holistic support to individuals and their families during the dying process (End-of-Life Doula Training & Certification; certifiedcaredoula.com). A similar organization in the United Kingdom, Soul Midwives, was founded by Felicity Warner (https://www.soulmidwives.co.uk/). This organization trains people on how to soothe and care for people during the dying transition. Most individuals charge a small fee for this service, whereas some are volunteers. A major goal of the organization is to find people who will sit with the person who is dying. Sometimes the person has no family, or family members are uncomfortable witnessing the person’s death. Warner’s volunteers try to ensure that the person does not die alone. Warner states, “A good death is an extraordinary, moving experience. It can also have a healing quality, not only for the person who is involved but for their families, friends, and the wider community” (http://soulmidwives.co.uk/).

Volunteers are a growing group of individuals who are not afraid to be with someone who is actively dying even if they do not know the person. I provide care for people who are dying as a volunteer for AccentCare (previously, Seasons Hospice and Palliative Care). Sometimes I sit by the bedside with family members who do not want to be alone when their loved one dies. Other visits are with people who know they are going to die and just want someone to talk to when their care partner needs to do errands or just get away for a few hours. My volunteer experiences have taught me the value of being present with people and their families during this time and have reinforced my efforts to ensure that no one dies alone.

The person dying usually wants someone with them, holding their hand. Others do not want anyone with them as they pass. A dear friend of mine was with her mother day and night as her mother was dying. After a week of this my friend was exhausted, and her daughter took over. After sitting with her grandmother for a day, my friend’s daughter told us that she had to go to the bathroom and then had an urge to take more time away from her grandmother, so she brushed her teeth and combed her hair. When she returned to her grandmother’s side, the woman had passed away. Perhaps she could not leave when family was with her.

NO ONE DIES ALONE (NODA)

Mother Teresa once said, “No one should die alone. Each human should die with the sight of a loving face.” Thanks to Sandra Clarke, a registered nurse at Sacred Heart Medical Center in Eugene, Oregon, who founded NODA in 2001, many people without families have someone to sit with them as they make their final transition. NODA began with the death of one patient who had a profound impact on Clarke and became the impetus for the program.

At the time, Clarke was responsible for caring for seven patients as well as one older man with a do-not-resuscitate order who was nearing the end of his life. He asked her to sit with him, as he was alone. She promised to stay at his bedside after she had checked on her other patients, but when she returned to his room, he had died alone. She resolved to do her best so that no one would ever have to die alone, at least not in her hospital. Working with the hospital’s volunteer group, she recruited a group of “compassionate companions” to sit with patients who were dying and were alone. The NODA program has spread throughout the United States and internationally. NODA is usually hospital based, but as soon as I read about this program, I realized it was desperately needed in long-term care.

People who work in or consult with care homes, especially large organizations, are often frustrated by how long it takes to make changes. One of my roles as a consultant, and the one I love the best, has been to implement new programs. Implementation requires numerous steps, such as developing budgets, sometimes finding space, deciding how to find team members to implement the program, and purchasing supplies. The to-do list before getting approval for a new program can seem endless. However, my experience implementing NODA at EPOCH in Norton, Massachusetts, showed how in just a few short weeks, extraordinary changes can take place when you work with an extraordinary and dedicated team. In the following pages, I share my experience implementing NODA as part of the Namaste Care approach as an example of how this program could be launched in other care homes to support people who are dying.

The Start of NODA for Namaste Care

The story of NODA for Namaste Care began when my friend Anne Sherman shared a magazine article that described the NODA program. Upon reading the article, I knew I had found the missing piece for Namaste Care. NODA was a program that could make a profound impact on end-of-life care, especially for people with no families. The article mentioned a guide for starting NODA, so I ordered it.

The guide was written for hospitals, but I saw immediately that this program could be adapted for a long-term care setting, and I had a community in mind where NODA could be implemented—the care home in Norton. This care home already had an excellent Namaste Care program, and I thought that the team would also embrace NODA. I was so confident that I requested a meeting with the administrator and some key staff to discuss the program just a few days later.

I met with the administrator Kurt Wheaton, director of nursing Marie Bates, social worker Joan Woods, and Namaste Care supervisor and assistant director of nursing Karen Custodio. I gave a brief description of the program and how I thought it could be adapted for a care home setting. Their reaction was immediate: Yes, they wanted to be the first community in their organization to pilot the program! The social worker remarked, “It’s too bad we don’t have the program in place now. One of our residents is dying, and she has no one with her.” They looked at each other, and the administrator said, “I can come until midnight.” Together, the team members each scheduled a time to sit with the resident so that she would not die alone. They essentially began piloting the program that night when they stayed beside this resident, Margaret, during her final moments.

MARGARET

As Margaret was dying in Massachusetts, her daughter was in Florida and her son in Vermont. The team wanted to ensure that she would not be alone in her last moments. The administrator, Kurt Wheaton, volunteered to sit with Margaret from 9:00 p.m. to 12:00 a.m., and the Namaste Care supervisor, Karen Custodio, agreed to come at 3 a.m.

As it turned out, Margaret’s son decided to travel from Vermont to see his mother and arrived 15 minutes before Kurt’s 9:00 p.m. shift. As the son was getting settled in, Kurt walked into the room, not knowing he was there. Margaret’s son was shocked and exclaimed, “You mean you came in tonight just to sit with her?”

Kurt did not leave, but stayed close by and checked on Margaret’s son every 45 minutes or so. He brought the son a cold drink and listened to him as he talked about his mother. The son needed to get some sleep, as he would have a long day ahead of him. He left about 11:30 p.m., extremely grateful that someone would still be there with his mother. Kurt remained until 12:30 a.m.

When Kurt left, he explained to the two care partners and one nurse on staff about what was being done for Margaret and asked for their assistance during the 3-hour gap before Karen would arrive. The two care partners decided that one person would sit with Margaret while the other care partner provided care for the other residents. If the care partner working with the other residents heard a call bell and was already caring for someone else, she would text her colleague, who would answer the bell and then return to her vigil at Margaret’s bedside.

Margaret died the next morning. Thanks to the team’s efforts, she did not die alone, but was in the presence of others during her final hours. By working together to help Margaret, the team came to understand how important this program could be to residents and their families.

The next day, the administrator introduced the concept of the program to his department managers, and it was greeted with a positive response. They all agreed that, as a team, they could create NODA in a care home setting. Usually, a few people will question aspects of a new program or feel they cannot assume additional responsibilities, but not this group. The director of maintenance, a man of few words, said, “This just makes sense. There is no one who wants to die alone.”

It just so happened that the administrator had scheduled his monthly general staff meetings for the next day, so he used the meetings as an opportunity to introduce the NODA program to all staff on all shifts. At the end of the day, I received the following message from him:

Well, it’s just past 11:00 p.m. and just finished my fifth and last staff meeting, discussing the No One Dies Alone program, and I cannot tell you in an email the full scale of overwhelmingly positive response this idea has gotten. Please call me the next chance you have to discuss it. In three of my five meetings staff members broke out in tears while discussing this. People here feel very strongly this is a program we need to do. You know that every time a program is introduced there is always resistance, but with this, 100% of the meeting attendees agreed this is something we should do. When we talk, I’ll tell you how things went last night with our actively dying patient. She ended up dying this morning at 8:20 a.m., but we learned a lot about this program, just by doing what we could for her last night. Enough for now, excited to speak to you voice to voice about this. Thank you for bringing this program to us.

In a follow-up message that same day, the administrator explained how he would set up the orientation and sign-up process next week. He shared the following with me: “I strongly encouraged staff, especially my nonclinical staff, to sign up as volunteers. I told them that what I learned by doing this is that it is nearly impossible to sit with a dying person, at 1:00 a.m., in a quiet room, for a person who has led a full, incredible life, and not come out a changed person.”

The administrator also shared some of the positive reactions he received from staff when presenting the concept of NODA. One team member’s first thought was how great this program would be for the team members, who often went home worrying about a person who was dying. She said that she would often call the care home after work to check on how the person was doing, but that now, she could text the volunteer at the person’s bedside to get updates rather than calling and bothering the nurse. She thought that she would rest easier at home knowing the person was not alone. Team members also commented on how much other residents would appreciate the program so they know that when their time comes, they too will have someone beside them.

The chief operating officer of the company had been copied on Kurt’s messages to me, and she sent me the following response:

This email has me crying! I have to say that even if we never get a minute of PR, this is the right thing to do and I am so overwhelmed with how Norton has embraced the program. Let’s strategize how to get the program in all of our buildings. Kudos to you, Kurt, and your team! Your building embodies our companies’ difference for which I am most proud and grateful!

With the help of Kurt and his team, the orientation program for NODA came together, and the first NODA orientation took place within the month. My experience implementing the first NODA program within a care home shows how the right idea and the right team can make positive change happen very quickly. A NODA program for care homes had taken shape.

Staffing the NODA Program

As a hospital-based program, NODA is able to provide what it calls “compassionate companions,” who are volunteers from within the hospital and from the local community. Most care homes, especially those that are for profit, have difficulty recruiting volunteers. For the NODA program implemented at EPOCH Senior Healthcare, the care home decided to recruit volunteers from the team because of the positive reaction from staff during the general team meetings. As the program developed, volunteers could be recruited from other sources if needed. These volunteers would be called companion volunteers. The following criteria and guidelines were established for team members’ involvement in the program:

- Companion volunteers must be employed by the care home for a minimum of 3 months and have the approval of their supervisor.

- They must have a current tuberculosis test.

- Team members agree that they will not be paid for volunteering even though they are employed by the care home.

- Volunteers must attend an orientation and education meeting.

- Volunteers agree to sign up for no less than 2 hours and no more than 4 hours. They sign up for times best suited to their work and personal life.

- The companion volunteer’s primary role is to sit by the bedside of a person who is actively dying as determined by nursing when no family members are present. At times, a volunteer may sit by the bedside even if family members are present if requested by the family.

- Companion volunteers understand that they always have the right to decline a request to sit with a person.

At EPOCH Senior Healthcare, several managers were enlisted to hold brief informational meetings with all staff. Forms were handed out asking team members to indicate whether they were interested in learning more, ready to complete a volunteer application, or not interested. Those who were interested in learning more about the program attended more detailed meetings explaining the volunteer opportunity. The first group attending the orientation and education program consisted of staff who had decided to volunteer and a few team members who just wanted more information before deciding. Afterward, all those interested in participating in the program received a Companion Volunteer Agreement.

NODA Orientation

The volunteer orientation began with a discussion about a good death and what that meant to each person. This was followed by a general description of the program and some ideas of what volunteers would do as they sat by the bedside. Volunteers were given a position description that outlined their role and the process of being present with someone who was actively dying. They learned about the logistics and steps of volunteering, from receiving a phone call about a resident who is actively dying to agreeing on a time to visit, and then introducing themselves to the charge nurse and staying beside the person during the dying process. The Guide for Volunteers was reviewed, and each person was given a copy. Volunteers who were ready to make the commitment were given a confidentiality form to sign and a Companion Volunteer Agreement.

Each volunteer received an orientation packet describing how to recognize that a person was actively dying, how to tell when someone has died, and steps to take—such as contacting the charge nurse—when they believed a person has died. Team members and volunteers who completed the orientation were given a special NODA pin and a certificate.

Volunteer orientation at EPOCH Senior Healthcare was scheduled several times during the first month because the interest was so high. It was offered during the day so that most team members did not have to come in when they were not working. These orientations required the support of management to ensure that the volunteers’ normal work duties were covered during the orientation program. However, I was surprised at how many staff members chose to come in outside of their work hours. I think this showed their commitment to ensuring that no resident would die alone.

NODA Coordinators

At EPOCH of Norton, Kurt and his management team decided that two team members were needed as coordinators of the program to ensure that at least one person would be available to take a call when someone was actively dying and could then call and assign volunteers. Each coordinator had a list of volunteers, their phone numbers, and the hours they could be with a resident.

NODA Supply Bag

Each NODA program should designate a safe and easily accessible spot to store supplies. For example, at EPOCH of Norton, a supply bag was available at all hours in the social work office. All supervisors should know where the bag is and have access to the office. The bag can contain some of the same items used in Namaste Care, such as a music player and soothing music, lavender linen spray, and hand lotion. In addition, the supply bag could include religious or spiritual items, such as a rosary, a Bible or Koran, or even a poetry book. EPOCH was across the street from a Dunkin’ Donuts, so a Dunkin’ Donuts gift card would be tucked in the bag for the volunteers. The bag can also contain a “comfort journal” where volunteers could record their thoughts, and note cards that they could send to the family.

Involvement of the Nursing Team

At EPOCH, leaders held special meetings with the nursing team to explain their role, as well as the role of the NODA volunteers. It was important for nursing staff to understand that even if the person volunteering was an employee, he or she would not be expected to provide personal care to the person who was dying. Companion volunteers should never be expected to do anything that makes them uncomfortable; just sitting with the person is enough. The object of NODA is simply to have someone with the dying person during the transition.

Nursing team members at the Norton care home decided on the following criteria for activating NODA:

1. First, the charge nurse and nursing supervisor would make a joint decision that the person was actively dying.

2. The resident’s attending physician would be notified, as well as the family.

3. If someone in the family was unable to be with the resident or requested that a volunteer sit with their loved one, one of the NODA coordinators would be contacted.

4. The NODA coordinator would arrange for companion volunteers to sit beside the dying resident.

5. The first volunteer would be given a key to the office where the NODA supply bag was stored; this key would be passed to subsequent volunteers as they took their shifts. When no volunteer was available for a shift, the bag would be left in the room for staff to use as they tried to fill in so that the resident would not be alone.

6. When family members would sit with the person, the nursing staff would check on them at least once per hour to see whether they needed a break, wanted any food or beverages, or had questions.

7. The NODA program would be noted on the person’s medical records.

Sustaining the integrity of any program is a challenge in any healthcare situation because everyone is so busy. At EPOCH, the team helped to promote and maintain the program by holding an in-service each year to review the NODA program, and as the need arose for more volunteers, they would hold volunteer orientation in-services. It can be helpful to include information on the program in the orientation of all new employees; after 3 months on the job, new team members could be eligible to apply to be a volunteer.

Endorsements from Staff, Family, and Companion Volunteers

As a result of positive reactions from staff and families, NODA became a part of the Norton care home’s culture. When interviewed, companion volunteers used some of the same words and phrases to describe their experiences: “We are honored to be with them” or “It’s just another way to show love for our residents.” Here are just a few stories and testimonials about the NODA program:

- Team member Felicia Jackson would sometimes take her young son with her when she was volunteering. He understood that someone was very sick and was going to “live with God” soon, and he seemed to see dying as natural. When one resident was dying, Felicia wanted to be with her even though the family was present. The family was very pleased that Felicia came to the care home after her shift was over and loved that her little boy accompanied her. According to the family, the presence of a child was a reminder of the circle of life. The boy proudly walked beside his mother as they accompanied the resident to the hearse.

- Dotti Raymond, the business office assistant, had special items she liked to bring in when she volunteered, such as peaceful music and Bible devotional readings. She would pray for residents and talk to them about “going home.” She made a point of visiting even when family members were present, and they would often ask her to stay and provide support as they let go of their loved one. She was also authorized by the Catholic Church to give communion and was available to provide this sacrament for families who wanted it as they sat with their loved one.

- Denise Doyon had been a team member for 12 years and knew that sometimes family members could not be with the person simply because they could not bear to see their loved one dying. When NODA was introduced to staff, she was one of the first people to sign up. She appreciated sitting beside the people she had cared for during their transition, as she felt that seeing them die peacefully completed the cycle of care for her. One of her favorite memories was of a person who had no family present and was struggling despite the comfort measures provided by nursing staff. When her shift ended, Denise returned to the person’s room, held her hand, and began to talk to her. Almost miraculously, she felt the resident become peaceful; the woman slipped away within a short time. Denise shared that being with people at the end of life is an honor and something the staff at this care home just do naturally.

BEING PRESENT WITH THE PERSON WHO IS ACTIVELY DYING

Some care homes do not have a structured program like NODA or hospice volunteers available to sit with the person. Here are a few suggestions to help staff arrange for someone to be with a resident who is dying alone:

- Ask department managers to take work (e.g., charting) to the person’s bedside. During the dying process, residents usually do not need conversation, just someone to sit with them and occasionally touch them.

- If the resident belongs to a faith community, ask religious organizations (e.g., church) whether they have volunteers who can spend time with the person.

- Develop a relationship with a hospice program that offers volunteers who can be present with someone who is dying, even if the resident is not a hospice patient.

- Provide special training to older adults who volunteer to sit with people who are dying.

- Schedule a team member who is on light or limited duty to sit in the room.

- Ask all team members in the care home to sign up for 30-minute intervals at the resident’s bedside.

The story of May, a resident with no close family, shows the commitment of the Namaste Care team to every person who is dying.

MAY

May had never married and had outlived most of her family and friends. She had one nephew who visited her occasionally but otherwise was alone. May had been on the Namaste Care wing for about 6 months when a care partner told me she thought May was dying. When asked why she thought that, she shrugged and said it was just a sense she had that May was getting ready to leave us. A few weeks later, during my next visit to the care home, May was in the Reagan Room. Her pictures were hung on the wall, a rosary was in her hand, and a care partner was sitting with her.

May’s nephew had been called, but he was unable to come, so the staff stepped in and became her family. A care partner came in on her day off just to be with May. It was moving to see a resident who had almost no family and no friends die peacefully holding the hand of someone who cared about her and wept as she passed.

David Kessler (1997) stated, “Death by nature is one of the most isolating experiences we can ever have.” Families who want someone to be with their loved one every moment during the dying process may have unrealistic expectations. Team members should explain to families about the timing of death. From my experience and reading on the subject, death is highly personal. Anecdotally, some people appear to have some control over the moment when they pass, with individuals seemingly waiting to pass away until family arrives or conversely, until they are alone. Family members feel so much guilt when they leave the room even for a few minutes to go to the bathroom or get something to drink and the person dies. Jane, for instance, did not pass away until the moment her children had left the room.

JANE

Jane was dying of cancer. Her husband Robert, their six children, and Robert’s mother were in the hospital room watching over Jane after having been told she would not live through the day. It was a Catholic hospital, and when Mass was announced over the loudspeaker, Robert asked the kids to go pray for their mother. As soon as they left the room, Jane took her last breath.

Perhaps Jane did not want to die in the presence of her children. Regardless, her story shows that the timing of death is unpredictable, and that families should not worry about planning for the exact circumstances of that moment. Rather, they should be present as best they can.

My own parents taught me about the unique and personal nature of death. I believe that my father wanted me, his only child, to be with him at the end. Daddy was in a coma for many hours. Eventually, I needed to get some sleep and went home. As an only child, I had to make all the funeral arrangements. The hospital staff agreed to call me when he died. The next morning when I woke up, I realized the hospital had not called. I phoned the nurses’ station and was told that my father was still alive. I raced to the hospital, entered his hospital room, and lay next to him. I said, “Daddy, you waited,” and he took his last breath.

My mother, on the other hand, lingered until my father left the hospital to go to Mass before she died. I think she knew that he did not want to see her die.

Families who are present with their loved ones during their passing will have complex emotions and may need support and guidance on how to spend their final moments with the person. Some family members may want to make sure nothing is left unsaid to their loved ones or repair any past hurts in the relationship. In his 2014 book The Four Things That Matter Most: A Book About Living, Ira Byock, M.D., urges people to mend relationships by saying four simple phrases: “Please forgive me,” “I forgive you,” “Thank you,” and “I love you.” Mending and preserving relationships may also be important to people who are dying, so team members can encourage the resident to say these phrases as well by writing them in large print and saying them along with the person who is making the transition. If family members try to communicate with their loved one but receive no reaction, team members can reassure them with a reminder that just sitting by the bedside is important. Family members may also need reassurance that it is okay to cry. Team members should reassure them that crying is an honest emotional expression and that the person making the transition will understand.

Team members should monitor the reactions of family members as the dying process comes to an end. Provide tissues, some beverages, and a chair for family members who look as if they might faint. Families, as well as individual family members, differ in their comfort levels with the dying process. Some family members cannot touch the person who is dying. In this case, the Namaste Care team member can hold the family member’s hand and the dying person’s hand, connecting all in a circle of love. Others want to be as close to the person as possible. If available, a double bed in the Reagan Room is a wonderful asset to family members who want to lie next to their loved one.

If possible, someone should be with the family at the time of the person’s death, prepared for whatever emotions are expressed and ready to offer support. When my mother died, a nurse stayed with me, standing quietly behind me as I said my final goodbye. It was a good thing he did, because my mother’s body began to move; thinking she was still alive, I panicked. The nurse gently touched my shoulder, explaining that this was a normal reaction of the body after death.

Team members should always be nonjudgmental about the actions and reactions of families during this time. Just as they are present for the person who is dying, they must also be present for that person’s family. This care and support were provided to Celia during Matthew’s passing.

MATTHEW’S STORY

As a consultant, I am rarely with residents at the end of life, so it was an honor for me to be present with Celia and to witness Matthew’s death. When the Namaste Carer staying with the couple was needed to help feed others in the neighborhood, I stayed with Celia. We both held Matthew’s hands and did our best to help him to the end of this voyage.

Although not a nurse, I had been present at enough deaths to explain what was happening to Matthew’s body. Celia became upset when Matthew’s hands began to turn blue and his breathing became irregular. I suggested that she cover him with another blanket and hold his hand.

Celia’s face glowed as she held her husband’s hand and told stories of their life together and of the special family they had raised. It was a beautiful sight to witness the tears streaming down her face and the love shining through her eyes. Matthew was a very fortunate man to have Celia beside him, literally “till death do us part.”

Celia talked to Matthew as if he could hear her. She told him how much she loved him and how she cherished the years they had together. She told him she was fine and that, although she would miss him, she would be all right; he could leave with her love. Jennie LaBrake, the charge nurse, walked into the room and realized that death was imminent, so she stayed at our side. Both Jennie and I were crying. How wonderful, I thought, that after seeing so many deaths, we could still cry when someone in our care died.

Matthew would take a breath and then stop, and we would all think he had left us; then he would take another breath. This seemed to go on for a long time. Something seemed to be holding Matthew back. Then, Celia told a comical story about their life together. We all laughed, and off he went on the wings of laughter. We hugged Celia, and she said her final goodbye to her dear husband, Matthew.

CHAPTER 10

After a Death

To live in the hearts we leave behind is not to die.

THOMAS CAMPBELL

Death is always sad, perhaps heartbreaking, but a good death can occur, with the person experiencing gentleness and serenity during the transition. The Namaste Care™ approach seeks to ensure a peaceful death for people and their families. Providing support and comfort allows families to have reassuring memories of their loved one’s last moments.

WHEN DEATH ARRIVES

In a long-term care organization, team members are educated on changes to the body that occur at the moment of death and follow procedures for pronouncing death. Namaste Care continues after the person has died, providing support for families in those sensitive and difficult moments after losing a loved one.

Determining Whether the Person Has Died

As the end approaches, breathing may pause for a few minutes, then resume. When death occurs, breathing totally ceases. The person’s eyes may be open, and the pupils enlarged; the eyes will not blink. The eyes can be closed gently with a finger. There is no heartbeat, and the bowels and bladder may release. In the United States, each state has rules and regulations governing who can pronounce the death. A nurse should be called to determine the next steps. Death can be pronounced by either a nurse or a physician, depending on the state in which the care home is located.

Families’ Reactions to the Death

Some families want to stay in the room with the body for a while; others leave immediately. Making sure that the family’s wishes are honored at this time is important. Families may need time to adjust to the death before a nurse or physician pronounces it. When family members are ready, they will be asked to leave the room while the body is prepared for the funeral home unless the family wants to help prepare the body.

As emphasized throughout this book, Namaste Care is about care for the families as well as for the person who has died. Team members now concentrate on caring for the family, ensuring that family members are not alone after they leave the care home. Many surviving spouses and partners are older adults who may have health problems, so a team member, often a social worker in the United States, should ensure someone is available to be with them before they leave the care home or hospice. Safety is a concern if the spouse is driving home alone. At this time, having a family member, friend, or clergy member present helps put everyone at ease. When no one is available, someone from the care home or hospice should take the spouse home and stay until the person is able to be left alone.

Family members may be in shock after the death and may be unable to remember things, such as contacting their children, friends, or religious leaders. It is a good idea for someone on the team (e.g., the social worker in the United States) to make sure that all pertinent information is easily located in the person’s records so that someone can assist the family in making these calls.

For the family and staff, the death is a time of conflicting feelings; sadness and a sense of relief may be tangled together. If the person had Alzheimer’s disease, family members have lived with the disease for so many years that the finality of death, though difficult, brings an end to a long, emotionally painful journey. How families react is very individual. Team members should consider themselves to be shepherds guiding families through the end of the journey and ensuring their safety.

AFTER-DEATH CARE

End-of-life care encompasses after-death care, which involves procedures for handling, preparing, and transferring the person’s body. Team members in the care home follow all regulations governing care of the body after death.

Autopsy

Some families decide to have an autopsy for their loved one. Autopsy literally means “to see for yourself.” It is a special surgical operation performed by a physician for diagnostic purposes, such as to confirm the disease or the event that led to death. An autopsy is performed in a respectful manner in a coroner’s office or in a funeral home. Signs often posted in rooms where autopsy takes place say, “This is the place where death rejoices to teach those who live.”

In the United States, the decision about having an autopsy must be made before death or immediately afterward, depending on state regulations. The reasons why people choose to have an autopsy are varied. Some families need to know whether their loved one really had Alzheimer’s disease, as a definitive diagnosis can only be reached after the brain has been examined at autopsy. Diagnostic criteria are so advanced that brains studied after death show that 90% of the diagnoses of probable Alzheimer’s disease are accurate. However, to confirm with 100% certainty that a person had Alzheimer’s disease, an autopsy must take place. Results are available within 3 months.

Some people are enrolled in research programs that have an autopsy as part of their protocol. In this case, the care home should know whom to inform when the resident has died so that the autopsy can be done within the appropriate timeframe.

One of the greatest fears of families considering autopsy is that the body will be disfigured. This does not happen when an autopsy is conducted on the brain. An incision is made in the back of the scalp, and the scar is not visible. Most religions allow this procedure. If the family is in doubt, their religious or spiritual adviser can assist in making the decision.

Brain and Organ Donation

Donating the brain or any other part of the body for research may be a person’s final gift. If someone does choose to donate a part of the body, team members should be informed by the family to ensure that the person’s wishes are carried out. Many research centers also have literature about donations. The medical record should contain information about the person’s wishes to make an organ donation and instructions on disposition of the body.

Preparing the Body

The Namaste Care nursing staff prepare the body for the funeral home following the care home’s procedures. If the family was not present for the death, the nurse needs to call and inform family members that the person has died. Family members are asked whether they want to see the body before the funeral home is called. Sometimes, they are on their way to the care home when the person dies. In these cases, team members prepare the room and make the person who has died look as peaceful as possible.

The person is cleaned and dressed in fresh pajamas or a nightgown, not a hospital gown. Hair is combed and neatly groomed. After a person dies, the skin takes on a grayish hue. A bit of light lipstick and a touch of rouge can improve the appearance of the skin. All medical equipment is taken from the room. Music is playing, and the lights are dimmed. Personal pictures and flowers add a personal touch to the room.

One or more team members, usually someone from the Namaste Care team, accompanies the family into the room. Tissues should be available. Family members are asked whether they want someone to stay in the room with them or they want to be alone. If families want to be left alone, a team member checks in periodically.

Taking the Person Out of the Care Home or Hospice

Years ago, the person who died was hidden from others as the gurney was being wheeled out of the care home. When a death occurred, residents were taken to their rooms, and all the doors were shut. The body would be quickly wheeled through the corridor, and then staff would let all the residents out of their rooms. Of course, the first question out of everyone’s mouth was, “Who died?”

The subject of death, though not completely out of the shadows, is moving toward the light of reality. The Namaste Care after-death ritual continues to honor people after they have passed and when their body is leaving the building. Death is not necessarily a fearful subject for people, and honoring a person’s body is not upsetting for others in the care home.

When the body is ready to leave the room, team members place a quilt over the body. In the United States, if the person was a veteran, the American flag may be draped over the body. These items to adorn the body are stored in a secured place within the care home, and whoever is in charge knows where to locate them. The funeral home’s gurney is wheeled out of the care home accompanied by family, friends, and team members. Sometimes a prayer is read or a song is sung as the gurney is placed in the hearse. Most of the time, the team member walking beside the gurney places a hand on the body, a reassurance that even in death, the person is not alone. The quilt or flag is taken off the gurney as it is placed in the hearse, and this covering is returned to the care home.

Rabbi Carol, who worked with Life Choice Hospice in Massachusetts, wrote this poem for team members to recite as they place the quilt over the body:

A Final Blessing

As flowers cover the earth outside

As leaves fall from the tree in autumn

We cover you with this quilt of colors

May it keep you warm

May it be your guide

Shalom, my friend

Day is done

May you rest in peace.

Amen

In the United Kingdom, the hearse starts the last journey at the care home where friends and family have gathered, or the hearse drives by the care home so that staff can say good-bye to the person. After the burial, a wake may also be held in the care home.

Whatever the process or ritual for moving the body from the home, after the person is taken from the building, Namaste Care continues in honor and memory of the resident. The person’s bed is stripped and remade with just a bedspread and pillow, because fresh linens will be needed when a new person moves into the room. Namaste Care team members often talk about how sad they feel if the bed is left unmade after a person in their care dies; there is nothing to show that someone lived and died in that room. The care partners often place a silk rose on the bed along with a picture or some other personal item belonging to the person who has died. Usually, management allows this memorial to stay on the bed for at least 24 hours. This ritual seems to help the team members grieve; it gives everyone time to adjust to the death before another person is moved to the bed.

Clothing and other personal items are packed in boxes, never garbage bags, and stored in a safe place until the family is available to pick them up or indicates that they should be donated to other people in the care home.

BEREAVEMENT SERVICES FOR STAFF AND FAMILIES

In U.S. care homes, within a day after the death, the social worker circulates a sympathy card for the family, and any team members who wish to sign it can do so. Whenever possible, someone from the care home attends the funeral or the viewing; it is a gesture that means so much to the family and is helpful to the grieving team members.

Staff in the care home should be provided with care and support after the death of the resident. The charge nurse or the care home manager should gather the team members and thank them for the care they gave to the person. Whenever possible, all shifts of team members are thanked in person. If no one is available to thank staff who work the night shift, the manager leaves a thank-you letter. Many team members feel as if they have lost a friend or relative when a resident dies. It can be helpful for these team members to hear positive details about the death, such as how the person died peacefully and was surrounded by family, staff, or volunteers. Even though they deal with death more than the average person, all team members still need reassurance as they grieve, and reminders that they made a difference in the life of the resident who has died.

We must never forget how much team members care about the people in their care. Many staff members need to talk about a favorite person long after a death has occurred. One person who paced all day unless he was coaxed into the Namaste Care room is always remembered when the Namaste Carers look at “his” couch. His spirit remains in the thoughts of team members, as do the spirits of so many people who have lived and died in care homes.

Some care homes and hospice organizations have a wall with a tree, and each leaf has the name of a person who has died in their care. Other care homes have a small table at the entrance to the home that holds pictures of residents who have recently died, along with a silk rose or fresh flowers. Most team members and families appreciate these memorials for people who have been part of the care home’s family.

EVALUATING END-OF-LIFE CARE

Several days after the death, a brief meeting should be scheduled for each group of team members who helped care for the person. The purpose of this meeting is to evaluate the effectiveness of the Namaste Care approach to the dying process. The meeting is facilitated by the social worker, nurse supervisor, or manager. Team members are asked questions about the person’s time in Namaste Care and give feedback about whether the death could be described as follows:

- Pain free
- Peaceful
- Without signs of distress

- With family, staff, and volunteers present and supported, unless the death was unexpected

Namaste Care team members want to learn what they could have done better and what went well. It is very important that these meetings always end with positive comments. As the meeting comes to a close, the person is honored with a brief period of silence. Then, the group shares memories. These usually produce laughter, and the meeting ends, much as our friend Matthew’s life did, with joy. It is my fervent wish that everyone living with dementia can experience the equivalent of Matthew’s good death.

MATTHEW’S STORY

After Matthew died, his wife Celia requested some time alone with him. When she was ready to leave the room, Namaste Care team members came in to clean and dress Matthew. All medical equipment was taken from the room, and the bedside table was arranged with his pictures, a live plant, and a small flag to pay homage to his years of service in the military. Celia then sat with him until the attendants from the funeral home arrived. She left the room while his body was put on the gurney.

An American flag was placed over Matthew, and with Celia, the charge nurse, a care partner, and other team members, he left the place that had been his home for several years. As they walked alongside the gurney, everyone touched Matthew. When they reached the hearse, the gurney was placed in the back, and the Namaste Carer read a brief poem. Then, at this very sad moment when the hearse was leaving, the group of people present spontaneously waved; realizing what they had done, they laughed and cried and hugged each other as Matthew was slowly driven away.

Celia later remarked that the experience of her husband’s death was beautiful, even peaceful. Although she was sad, she felt honored that team members were with her and shared the final moments. Accompanying Matthew to the hearse provided her with a sense of closure, and she had an overwhelming feeling of peace. She said, “I’m glad I stayed to the end. I would not have wanted to miss this last part of our journey together.”

After Matthew’s death, the grieving process began with small reminders to staff that Matthew Wilk had lived and died in the Reagan Room. Namaste Care team members were thanked by the family and by department managers for their part in helping to make Matthew’s death a good death. A memorial service was held later in the week.

Epilogue

Do not go where the path may lead, go instead where there is no path and leave a trail.

RALPH WALDO EMERSON

Matthew and Celia Wilk

When I developed Namaste Care™ more than 20 years ago, I never imagined how far-reaching its impact would be and that it would touch so many lives. The Namaste Care Group Program can be provided in whatever residential settings are offered in a country. Namaste Care can also be taken to the bedside in a local inpatient hospice house or the person’s own home.

Thankfully, end-of-life care is now often spoken of openly and is not a hidden fact of life. Many organizations and initiatives around the world, such as hospice care organizations, Soul Midwives, end-of-life doulas, and the NODA program, have brought the subject of dying out of the shadows.

As I often tell my audiences with a serious look on my face, I have done research on the subject and found that 100% of us will die. It is my hope that Namaste Care, with its loving-touch approach to end-of-life care in a comforting environment, will help people peacefully transition from life to death, whether they have advanced dementia or any other condition.

As I mentioned in the beginning of the book, I thought my professional role in life would be to serve as a social worker in long-term care homes. When the population of residents changed, and more and more of them had memory loss, I was unable to reach people through counseling, so my career path took a turn. I then spent most of my time developing activity programs for people with irreversible dementia. As I write this, at the age of 81, I am now on an international path, introducing Namaste Care all over the world in a variety of settings. Namaste Care can currently be found in 12 countries. This trail is a blessing for me as I meet so many wonderful, caring people and learn how they help the elders in their country. I urge you not to fear abandoning a predictable personal or professional path, and to leave your own trail!

Namaste,

Joyce

APPENDIX A

Namaste Care Nursing Supplies

PERSONAL SUPPLIES

Each resident who attends Namaste Care™ on a regular basis must have a zipped plastic bag clearly marked with his or her name. The bag should contain the following personal care items:

- Hairbrush and/or comb
- Nail clipper
- Emory board
- Lip balm

- Any other personal items supplied by the family (e.g., lipstick, additional make-up, hair decorations, after-shave lotion)

GENERAL SUPPLIES

Hair Products

- Combs and/or brushes

- Ribbons, decorative hair combs, other washable hair ornaments for the ladies

Face Products

- Face cream, unscented and nonallergenic (Pond’s is a favorite); for infection control, cream must be transferred into individual containers or scooped from the original container using individual Q-tips or other applicators before putting it on residents’ faces

- Shaving cream (same infection precautions apply as for face cream)

- Safety razor (must have a safe and appropriate container for disposing of razors)

- Shaving lotion (Old Spice is a favorite); ask the family about the resident’s preferred brand of after-shave lotion (the family may provide it)

Mouth Care Products

- Lemon glycerin swab sticks
- Toothette disposable oral swabs
- Lip gloss

Hand and Fingernail Products

- Basins
- Soap
- Orange sticks
- Emory boards
- Nail clippers

Skin Products

- Baby oil or lotions

- Unscented lotions

Food and Beverages

- Thickeners
- Yogurt
- Ice cream
- Pudding
- Lollipops
- Orange slices
- Crushed pineapple
- Popsicles
- Orange juice
- Cranberry juice
- Soft cookies

Paper Products

- Paper cups
- Covered sip cups
- Flexible straws
- Spoons
- Napkins
- Plastic wrap
- Markers and labels
- Small storage bags
- Paper towels

Linen

- Pillows (for positioning)
- Blankets (colorful)
- Sheets (colorful)
- Quilts
- Face cloths
- Towels

Miscellaneous

- Disposable wipes
- Small plastic bags for individual residents
- Large plastic bags for storing items
- Wastebasket and plastic inserts
- Laundry basket for soiled items
- Latex gloves
- Hand-washing liquid
- Pens and pencils
- Laundry marker
- Notepaper
- Communication book

APPENDIX B

Namaste Care Activity Supplies

ACTIVITY SUPPLIES

- Stuffed animals, especially soft, realistic birds that make specific bird calls

- Realistic dolls

- Aromatherapy diffuser (must be approved by maintenance department)

- Essential oils, especially lavender

- Scents that reflect different seasons, such as fir and cinnamon for winter, cut grass and flowers for spring/summer, and pumpkin for autumn

- Nature videos

- Sensory materials (e.g., pieces of fabric, silk, satin, leather, rabbit fur, lace, cashmere)

- Antique items (e.g., kitchen implements, marbles, old glass milk bottles, recipe boxes)

- Musical items (e.g., wind chimes, music boxes, rain sticks, drums, bells, singing bowl)

- Portable CD/tape player/digital media player

- Compact disks (CDs) or audiotapes of music and nature sounds

- Tabletop fountains

- Assorted reading material, including spiritual texts, poetry, holiday readings

- Humorous material (e.g., funny hats, circus wigs, realistic animal puppets)

- Sensory balls

- Bubble soap and a bubble machine

APPENDIX C

Namaste Care Resources

ALZHEIMER’S INFORMATION AND EDUCATION

Alzheimer’s Association (United States headquarters). Information about local Alzheimer’s Association chapters is available on the national headquarters web site.

http://www.alz.org

Alzheimer’s Disease Education and Referral Center (ADEAR)

https://www.nia.nih.gov/health/about-adear-center

Alzheimer Europe

http://www.alzheimer-europe.org

Alzheimer’s Society

http://alzheimers.org.uk

Alzheimer Scotland

http://www.alzscot.org

Alzheimer’s Association Australia

https://www.alz.org/au/dementia-alzheimers-australia.asp

Alzheimer’s Disease International

http://www.alz.co.uk

Dementia Care Matters

http://www.dementiacarematters.com

SPECIAL RESOURCES

There are numerous web sites devoted to issues surrounding end-of-life care. In addition to the sites listed below, you can do an Internet search of any of the following key words:

- Hospice care
- Palliative care
- Death and dying
- Advanced dementia
- End-of-life care

National Hospice and Palliative Care Organization (NHPCO)

http://www.nhpco.org

Local hospices are listed on the Internet (search using the name of your city followed by hospice to find services in your area).

ACTIVITY SUPPLIES

Nasco

http://www.enasco.com

Best Alzheimer’s Products

http://www.best-alzheimers-products.com

S&S Worldwide

http://www.ssww.com/therapy-and-rehab

Cedar Lake Nature Series

http://www.cedarlakedvd.com

Elder Song Publications, Inc.

http://www.eldersong.com

RESEARCH ON NAMASTE CARE

Agencies and universities that have conducted research on Namaste Care are listed below. Additional research and resources may be found here: https://namastecareinternational.co.uk/resources/

Australia

- School of Nursing and Midwifery, University of Canberra

- University of Western Sydney, Penrith

Canada

- Shalom Village, Hamilton, Ontario, Canada

- University of Saskatchewan, Saskatoon

Iran

- University of Medical Sciences, Tehran

The Netherlands

- University Medical Center, Leiden

United Kingdom

- Greenhills Care Home, Biggar Lanark, Scotland

- King’s Hospital, London
- Park Avenue Care Center, Kent
- NHS Trust, London
- St. Christopher’s Hospice, London
- University of Worcester, Worcester

United States

- Hale Nani Rehabilitation and Nursing Center, Honolulu, Hawaii

- Department of Psychiatry, Boston University School of Medicine, Boston, Massachusetts

- School of Aging Studies, University of South Florida, Tampa, Florida

APPENDIX D

Namaste Care Activities of Daily Living Checklist

APPENDIX E

DEMENTIA
BILL of RIGHTS

Every person diagnosed with Alzheimer’s disease or other dementia deserves:

- To be informed of one’s diagnosis

- To have appropriate, ongoing medical care

- To be treated as an adult, listened to, and afforded respect for one’s feelings and point of view

- To be with individuals who know one’s life story, including cultural and spiritual traditions

- To experience meaningful engagement throughout the day

- To live in a safe and stimulating environment

- To be outdoors on a regular basis

- To be free from psychotropic medications whenever possible

- To have welcomed physical contact, including hugging, caressing, and handholding

- To be an advocate for oneself and for others

- To be part of a local, global, or online community

- To have care partners well trained in dementia care

The Best Friends™ Dementia Bill of Rights by Virginia Bell & David Troxel. Copyright © 2013 Health Professions Press, Inc.

APPENDIX F

Pain Assessment in Advanced Dementia (PAINAD) Scale

Source: Warden, V., Hurley, A.C., & Volicer, L. (2003). Development and psychometric evaluation of the PAINAD (Pain Assessment in Advanced Dementia) Scale. Journal of the American Medical Directors Association, 4, 9–15. Reprinted with permission.

KEY

Breathing

1. Normal breathing is characterized by effortless, quiet, rhythmic (smooth) respirations.

2. Occasional labored breathing is characterized by episodic bursts of harsh, difficult, or straining respirations.

3. Short period of hyperventilation is characterized by intervals of rapid, deep breaths lasting a short period of time.

4. Noisy labored breathing is characterized by negative-sounding respirations on inhalation or exhalation. These may be loud, gurgling, or wheezing and appear strenuous or straining.

5. Long period of hyperventilation is characterized by an excessive rate and depth of respiration lasting a considerable time.

6. Cheyne-Stokes respiration is characterized by rhythmic waxing and waning of breathing, from very deep to shallow respirations with periods of apnea (cessation of breathing).

Negative Vocalization

1. None is characterized by speech or vocalization that has a neutral or pleasant quality.

2. Occasional moan or groan is characterized by mournful or murmuring sounds, wails, or laments. Groaning is characterized by louder than usual, inarticulate involuntary sounds, often abruptly beginning and ending.

3. Low-level speech with a negative or disapproving quality is characterized by muttering, mumbling, whining, grumbling, or swearing in a low volume with a complaining, sarcastic, or caustic tone.

4. Repeated, troubled calling out is characterized by phrases or words being used over and over in a tone that suggests anxiety, uneasiness, or distress.

5. Loud moaning or groaning is characterized by mournful or murmuring sounds, wails, or laments in much louder than usual volume. Loud groaning is characterized by louder than usual inarticulate, involuntary sounds, often abruptly beginning and ending.

6. Crying is characterized by an utterance of emotion accompanied by tears. There may be sobbing or quiet weeping.

Facial Expression

1. Smiling or inexpressive is characterized by either upturned corners of the mouth, brightening of the eyes, and a look of pleasure or contentment or a neutral, at-ease, relaxed, or blank look.

2. Sad is characterized by an unhappy, lonesome, sorrowful, or dejected look. There may be tears in the eyes.

3. Frightened is characterized by a look of fear, alarm, or heightened anxiety. Eyes appear wide open.

4. Frown is characterized by a downward turn of the corners of the mouth. Increased facial wrinkling in the forehead and around the mouth may appear.

5. Facial grimacing is characterized by a distorted, distressed look. The brow is more wrinkled, as is the area around the mouth. Eyes may be squeezed shut.

Body Language

1. Relaxed is characterized by a calm, restful, mellow appearance. The person seems to be taking it easy.

2. Tense is characterized by a strained, apprehensive, or worried appearance. The jaw may be clenched (exclude any contractures).

3. Distressed pacing is characterized by activity that seems unsettled. There may be a fearful, worried, or disturbed element present. The rate of walking may by faster or slower.

4. Fidgeting is characterized by restless movement. Squirming about or wiggling in the chair or bed may occur. The person might be inching a chair across the room. Repetitive touching, tugging, or rubbing of body parts can also be observed.

5. Rigid is characterized by stiffening of the body. The arms and/or legs are tight and inflexible. The trunk may appear straight and unyielding (exclude any contractures).

6. Clenched fists are characterized by tightly closed hands. They may be opened and closed repeatedly or held tightly shut.

7. Knees pulled up is characterized by flexing the legs and drawing the knees up toward the chest. It may occur with an overall troubled appearance (exclude any contractures).

8. Pulling or pushing away is characterized by resistiveness upon approach or to care. The person is trying to escape by yanking or wrenching him- or herself free or by shoving the caregiver away.

9. Striking out is characterized by hitting, kicking, grabbing, punching, biting, or other forms of personal assault.

Consolability

1. No need to console is characterized by a sense of well-being. The person appears content.

2. Distracted or reassured by voice or touch is characterized by a disruption in the distressed behavior when the person is spoken to or touched. The behavior stops during the period of interaction, with no further indication that the person is distressed.

3. Unable to console, distract, or reassure is characterized by the inability to soothe the person or stop a behavior with words or actions. No amount of comforting—verbal or physical—will alleviate the behavior.

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