Alzheimer's: A Complete Guide to Understanding and Managing Alzheimer's Disease
Date: 2019-12-12T00:00:00+00:00
Keywords: alzheimers diet; Alzheimer’s disease; alzheimer’s prevention; alzheimers and dementia; alzheimers book; Alzheimer’s; alzheimer’s caregiver
Description: Understanding and Managing Alzheimer’s Disease Alzheimer's disease is a progressive form of dementia that kills brain cells, leading to continual loss of memory and intellectual capacity, and eventual death. Sadly, no treatment has been found to stop its progression. This book provides a valuable resource for both individuals struggling with the effects of Alzheimer's and those who care for them. By reading this book, you'll learn: • The many facets and stages of the disease • The signs, symptoms, and diagnosis of Alzheimer's • The different stages of Alzheimer's, and treatment options current
Publisher: C.H. Press

Alzheimer’s

A Complete Guide to Understanding and Managing Alzheimer’s Disease

Julia Chandler

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© Text Copyright 2021 by Julia Chandler - All rights reserved.

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Table of Contents

Introduction

Chapter 1: Understanding Alzheimer’s Disease

Basic Facts

Why Do People Refer to Alzheimer’s as Dementia?

Chapter 2: The Signs and Symptoms of Alzheimer’s Disease

Chapter 3: Diagnosing Alzheimer’s Disease

What Will the Physician Do?

Chapter 4: The Different Stages of Alzheimer’s

Chapter 5: Treatment Options

Medication

Support

Tips for People Who Have Alzheimer’s

Chapter 6: Diet and Nutrition for Alzheimer’s Patients

Causes of Bad Appetite

Limit Stress Levels

Independence is Key

Safety First

Chapter 7: Caring for An Alzheimer’s Patient—Early Stage

Basic Tips

Chapter 8: Caring for an Alzheimer’s Patient—Middle Stage

Basic Tips

Chapter 9: Caring for An Alzheimer’s Patient—Late Stage

Eating

Bodily Functions

Health—Skin and Body

Pneumonia and Other Infections

Illness and Pain

Palliative Care

Conclusion

Introduction

Affecting more than 5 million Americans over the age of 65, Alzheimer's disease is the most common form of dementia. This condition attacks the brain, and it steadily and progressively reduces the brain’s ability to remember recent events and perform simple activities. Alzheimer's is degenerative, has no cure, and it eventually leads to death.

Alzheimer's is not a normal part of the aging process, and so, it does not affect every older person. Furthermore, its signs and symptoms are far more devastating than occasionally misplacing keys or forgetting the name of a new neighbor. Ongoing research into Alzheimer's seems to indicate a hereditary component, but definitive answers to the complexities of the condition remain to be discovered.

Individuals coping with Alzheimer's, and their caregivers, need a network of support and a guide to help them live their daily lives. The content of this book provides ideas and suggestions for all concerned at every stage of this difficult disease. For instance, what happens before and after diagnosis of Alzheimer's? What should the care plan look like? And, probably one of the most important issues: is a caregiver in place?

In this comprehensive guide, each chapter addresses a specific and important issue.

Chapter 1 outlines the basics regarding dementia and Alzheimer's.

Chapter 2 addresses the specific signs and symptoms of the condition.

Chapter 3 discusses the diagnosis of Alzheimer's.

Chapter 4 introduces the reader about the stages of Alzheimer's.

Chapter 5 presents information on treatment options currently available.

Chapter 6 contains considerations about diet and nutritional.

Chapters 7, 8, and 9 delve deeply into the implementation of comprehensive care plans appropriate for each stage of the disease: early, middle, and late.

This guide has a dual purpose: Firstly, it will help people with Alzheimer's live as fully as possible; additionally, it will assist the family, friends, and caregivers of the affected individual in working with, caring for, and loving their loved ones on a daily basis.

Chapter 1: Understanding Alzheimer’s Disease

Alzheimer’s disease was given its name by Alois Alzheimer, a German neurologist. It is a physical disease—not a mental or emotional one—that attacks the brain. As the disease progresses, abnormal structures, called tangles and plaques, which are formed by the tau protein and beta-amyloid protein, respectively, start to develop in the brain, slowly killing off brain cells. Alzheimer’s also causes a reduction of the brain chemicals that are responsible for message transmission within the brain. As the disease progresses, it causes deterioration of a person’s memory and communication skills, and it severely affects daily living.

Basic Facts

• Dementia is a generalized term for memory loss and the loss of several intellectual abilities that can cause serious disruption to daily life.

• Alzheimer’s primarily affects those over the age of 65; although, around 5% of those who suffer have what is known as early- or younger-onset Alzheimer’s. This mostly affects people who are in their 40s and 50s.

• Alzheimer’s gets worse over time. It is progressive, and the symptoms tend to worsen on a gradual basis. Memory loss starts out as mild, but by the later stages, most sufferers cannot hold a conversation and are often not aware of where they are.

• Alzheimer’s is the sixth leading cause of death in the US. Once the symptoms become noticeable, sufferers tend to live approximately 8 years, though they can live up to 20 more years. Age and other health conditions affect the progression of the disease.

• There is currently no cure, but research is continuing. We are now at a point where treatment can temporarily slow the worst symptoms and quality of life can be improved for both the sufferer and their caregiver. Research continues into finding causes of the disease, how it can be treated, and how it can be prevented.

Why Do People Refer to Alzheimer’s as Dementia?

Even though Alzheimer’s is a form of dementia, it is not correct to assume that they are the same thing. Indeed, many people use the term “dementia” with regards to Alzheimer’s sufferers, but there are distinct differences.

There remains a thick cloud of mystery surrounding both diseases, and it is this enigmatic status that accounts for the confusion. In short, dementia is a brain disorder that effects the performance and communication of a person. Alzheimer’s is a disease. It is a form of dementia, but it affects specific areas of the brain—memory, thought, and language.

Dementia is a general term used to describe symptoms that affect thinking and memory. It is most often linked with a decrease in cognitive abilities as a person ages. Alzheimer’s is not the only disease that can cause dementia. Others include Parkinson’s, Huntington’s, and Creutzfeldt—Jakob disease.

Alzheimer’s accounts for 60−80 percent of dementia cases, and though they are related, Alzheimer’s is a more specific form of dementia. In-depth testing is used to determine if a patient has dementia or Alzheimer’s—more about that later.

Alzheimer’s is not reversible, whereas dementia can be. Once a person has Alzheimer’s, the best a physician or caregiver can do is slow the progress and give them a temporary stay—a better quality of life.

Dementia, on the other hand, can be treated, and some forms are temporary or completely reversible. That, of course, depends on the cause of the dementia and how soon treatment begins.

Chapter 2: The Signs and Symptoms of Alzheimer’s Disease

As with almost every disease or medical condition, Alzheimer’s comes with a set of warning signs and symptoms. The following are some of the first things you are likely to notice about a family member or friend with Alzheimer’s:

Loss of Memory—We all forget things now and again—that’s a symptom of a busy life. For the Alzheimer’s patient, though, things that happened many years ago are as clear as day; but, what they did yesterday, or even an hour ago, is a different matter. Alzheimer’s affects short-term memory, and many sufferers tend to forget complete events or whole conversations.

Repeating Themselves—One warning sign is that a person keeps telling the same story over and over again, almost word for word. They will also tend to ask the same questions, regardless of how many times you have answered—it’s simply because they have no recollection of having asked it.

Forgetting Words—Everyone forgets the odd word— it’s on the tip of your tongue, but it sometimes takes a few minutes to formulate in your brain. Someone who has Alzheimer’s will struggle with the most basic of words, and their speech may become difficult to follow and contorted.

Changes in Personality—Sudden mood swings are a big warning sign, especially if they get angry, distressed, or very emotional for no real reason. People with Alzheimer’s tend to withdraw and stop doing activities they previously enjoyed. They may act suspicious of people, particularly members of the family, while becoming very trusting of strangers whom they don’t know well.

Confused and Disorientated—Someone with Alzheimer’s may find himself or herself inexplicably lost in an area they are very familiar with. They may also demonstrate an inability to carry out tasks they previously had no trouble with—cooking a meal, shaving, washing the dishes, etc.

Changes in Hygiene—This is one of the biggest warning signs, particularly in people who have always taken pride in their appearance. If you notice a family member suddenly stop bathing or cleaning their teeth, or dressing in dirty, unwashed clothes, do not dismiss it.

Strange Behavior—How many times have you lost your keys and then found them where you least expected to find them? Someone with Alzheimer’s may deliberately put things in odd places—you might find the toothpaste and toothbrush in the fridge, while the milk may be under the sink.

Not all patients display all of these symptoms; some will only have one or two. In that case, it is easy to dismiss the odd sign as simple old age. The following table highlights some of the signs of Alzheimer’s against the signs of aging:

Aging Signs

Alzheimer’s Signs

Making the odd bad choice or decision

Constantly making bad decisions and showing poor judgment

Missing the odd monthly payment

Unable to manage any kind of budget and handle money

Not remembering what day it is, but realizing later on

Has no idea of the day, date, month, or season

Occasionally struggling to remember a word

Difficulty in holding a conversation; forgetting what has just been said

Occasionally misplacing something

Constantly losing things; unable to retrace their steps to find the item in question

Chapter 3: Diagnosing Alzheimer’s Disease

The very worst thing you can do is write Alzheimer’s sufferers off as simply getting old. The thing you should do is make an appointment to see a physician. Getting an early diagnosis allows you to take full advantage of a wider range of treatments. As a caregiver, this gives you a better chance of caring for the patient, and as a sufferer, early detection allows you to maintain your independence for much longer.

What Will the Physician Do?

The physician will carry out a full evaluation of the patient’s health. He or she will be looking for any medical conditions that could affect the workings of the brain, and the patient may be referred to another specialist:

Neurologist—Specializes in the brain and particular diseases. He or she also specializes in the central nervous system and will be looking for any conditions that affect it, ultimately leading to brain disease

Psychiatrist—Specializes in the mind and the way it works, and looks to identify conditions and disorders that effect the mind.

Psychologist—Has the specific training required to fully test the memory and all other mental functions

Geriatrician—Specializes in caring for elderly people, specifically those with Alzheimer’s

Sadly, there is no easy test that will immediately identify Alzheimer’s disease. Instead, a physician must use a range of different tests to make sure it is properly diagnosed. These include:

• A full physical examination

• Blood tests

• Urine tests

• Mental status testing—a series of questions asked to try to assess the mental function of the patient. The tests include short-term memory tests—whether they can follow instructions and solve problems.

• Neurological testing—tests include checking speech, coordination, balance, and reflexes.

• Imaging tests—these are PET, CT, and MRI scans. They can look deeper and find other causes of problems—a tumor or evidence of a stroke, for example.

Family members and friends of patients must be prepared to do their part as well. They will need to tell the physician:

• What signs they have noticed and when

• If there are any pre-existing health conditions

• Any medication that is being taken, including supplements or alternative therapies

• Diet

• Alcohol use

• Any life changes—retirement, death, or moving home, for example

It is easy to confuse the signs of Alzheimer’s with normal aging and, as such, it isn’t easy to make the diagnosis. You can ask for a second opinion, or you can wait and see if the symptoms clear up or get worse; however, it isn’t wise to wait—the earlier Alzheimer’s is diagnosed, the easier it is to help, but many people refuse to see a physician, even when the symptoms are obvious.

Much of this comes from fear, anger, and, for some, the fact that there is no cure. While these hesitations are perfectly understandable, if you notice that a family member is showing signs, you must get a diagnosis straightaway for the following reasons:

It may not be Alzheimer’s

Some other conditions exhibit symptoms that are very similar, and one of these may be to blame. These include problems with the thyroid, depression, drug use, alcohol, vitamin deficiencies, and stroke.

The sooner you get a diagnosis, the sooner treatment can begin

While there is no cure, there are treatments available that can ease the progression of the disease and provide a better quality of life. There is also the possibility of inclusion in clinical trials to test new treatments.

The earlier the diagnosis, the sooner you can make plans

It isn’t easy to accept that a loved member of the family or an old friend has Alzheimer’s, but the earlier you find out, the earlier you can research the condition and consider the best way forward, treatment options, and ultimately, long-term care.

Chapter 4: The Different Stages of Alzheimer’s

When the diagnosis is made, the physician will provide you with information on each of the three stages of the disease. This is to give both the patient and the caregiver an idea of what to expect, how the disease progresses, and to give you a chance to plan for the best care. Be aware that every individual person has a different progression rate and, as such, these are only guidelines.

Stage 1—Early—lasts approximately 2-4 years

Symptoms include frequent loss of memory, particularly short-term memory, questions repeated over and over, and problems understanding language and expressing the correct words. Problems with co-ordination, depression, mood swings, and the need for constant reminders. May also show difficulty in driving.

Stage 2—Moderate/Middle—Lasts approximately 2-10 years

More persistent loss of memory, forgetting things such as their own personal history or who people are, even close friends or family members. Speech may ramble, and there may be confusion over where they are, what day it is, even what season it is. Getting lost in familiar places, not sleeping properly, and behavioral changes, often aggravated by change and stress. Delusional thinking, aggressive behavior, and sometimes uninhibited behavior. Coordination and mobility become more difficult as tremors and rigidity set in. Need to be constantly reminded of things and need more and more assistance with daily activities.

Stage 3—Severe/Late—Lasts approximately 1-3 years, maybe more

At this stage, patients with Alzheimer’s will show confusion about both the past and the present. Their ability to remember, communicate, and to process information is severely reduced. Verbal skills are almost gone, and they are unable to care for themselves. If they are not already suffering from immobility, they are more likely to fall over. They will experience problems with swallowing, will be incontinent, and will be prone to illness. Extreme mood swings, extreme behavior, and in some cases, hallucinations are experienced, along with delirium. 24-hour care is required at this stage.

Chapter 5: Treatment Options

While there isn’t a cure for Alzheimer’s, there is medication that can help to slow down its progression and even reduce some of the symptoms. Once the diagnosis has been made, the first thing to do is to draw up a care plan.

A care plan ensures that the patient receive the right care at the right time and ensures that a caregiver is in place from the start. The plan involves identifying needs and areas where assistance might be needed:

• Support required by you or your caregiver so that you can keep your independence for as long as possible

• Are there any changes that must be made in your home to make life easier for you?

• Do you require any financial help?

Your physician, together with your local social care team, will help to draw up this plan and ensure that you get exactly what you need.

Medication

There are medications available for Alzheimer’s patients, but use of them depends on how severe and at what stage the condition is. All of them, without fail, can and must only be prescribed by a physician, psychiatrist, neurologist, or other medical specialist. Before any medication is given, an assessment is carried out with both the patient and the caregiver. These assessments will continue to take place on a regular basis throughout the treatment to ensure that it is working and not causing unintended problems.

Donepezil, rivastigmine, and galantamine are all AChE inhibitors and can be prescribed for patients who are in the early to mid-stages of Alzheimer’s. Side effects include:

• Nausea/vomiting

• Diarrhea

• Headaches

• Tiredness

• Difficulty sleeping

• Muscle cramps

Memantine is prescribed for people who cannot have AChE inhibitors or who are in late-stage Alzheimer’s. Some of the side effects include:

• Headaches

• Fatigue

• Constipation

• Dizzy spells

• Problems breathing

• Problems balancing

Support

Medication, though helpful, is not the only way to help a person with Alzheimer’s. Other caregivers, such as occupational therapists, can help identify if there are any parts of daily life that they will need help with, i.e. getting dressed, cooking, working out solutions to problems, etc.

They will determine if the patient need handrails or grab bars installed in their home and will arrange for installation. Psychological treatments, which can help improve memory and language problems, may also be explored.

Physicians may also decide that a patient may need medication or other treatment to help with depression, hallucinations, delusional feelings, and the challenging behavioral symptoms that can come with Alzheimer’s.

Tips for People Who Have Alzheimer’s

These tips can also be used by the caregiver to make life easier for both parties:

• Keep a diary or notebook close by, and make sure important things are written down so you don’t forget them.

• Have a calendar in plain sight in obvious places.

• Keep a bowl on your table for things like car or house keys.

• Arrange to have the newspaper delivered every day—this will keep the date and day fresh in your mind.

• Put labels on cupboard, doors, and drawers.

• Program names and numbers into your phone, and keep a list of important or helpful numbers next to the phone.

• Write reminders in obvious places, for example, on the front door to remind you to pick your keys up when you go out.

• Set alarms and reminders on your phone or watch.

• Have smoke alarms and gas detectors installed throughout the house.

Chapter 6: Diet and Nutrition for Alzheimer’s Patients

A good diet with proper nutrition is important for the wellbeing of everyone, but for Alzheimer’s patients, it is vital. Poor nutrition can exacerbate the symptoms of Alzheimer’s and cause weight loss. These tips are designed to help maintain a healthy diet for the patient, and for the caregiver as well—after all, if the caregiver doesn’t keep their strength and health up, they won’t be able to provide the support and care needed:

• A good, balanced diet is essential, with a range of different foods.

• Vegetables, low-fat dairy, lean protein, fruits, and whole grains are vital.

• Foods that are high in saturated fat and cholesterol must be avoided. Although fat is required in any diet, the wrong kind of fat will do more harm than any other aspect of the diet. Avoid or reduce butter, oil, fatty meats, and anything that is high in saturated fats.

• Reduce or eliminate refined sugar. Excess refined sugar is in a good deal of foods, especially processed foods. They contain nothing but calories—no useful minerals, vitamins, or fiber. If you have a sweet tooth, swap out cakes, pies, and sweets for fruit. The only exception to this is in late-stage Alzheimer’s, if weight loss becomes a problem.

• Cut down on salt, and check food labels for sodium content. Use spices or herbs instead.

• Hydration is as important as the foods you eat. Drink small cups of juice and water consistently throughout the day; think about fruits that are high in water content.

Causes of Bad Appetite

There are several reasons why an Alzheimer’s patient may not be eating properly:

• They don’t recognize the food.

• They have dentures that do not fit properly and cannot tell you.

• Medications can affect appetite—if you notice a difference after a new medication is introduced or a dosage is altered, call the doctor.

• Lack of exercise decreases the appetite. Try to encourage short walks every day, a little gardening, or even just washing the dishes after a meal.

• They may not be able to smell or taste food anymore.

Limit Stress Levels

Caregivers report high stress levels, which is understandable, but help is always available. For patients with middle- and late-stage Alzheimer’s, perceptions of food, taste, and smell can be altered and changed, making eating difficult. Caregivers can help out and reduce their own stress levels by:

• Limiting any distractions at mealtimes

• Setting a simple table—move any objects from the table that can be confusing, and only use the necessary utensils for that meal

• Making the food stand out—Alzheimer’s patients often experience problems with vision and spatial awareness. Use white plates and colored tablemats, or vice versa. Get rid of patterned tablecloths, dishes, or placemats—the plate needs to stand out from the table.

• Making sure the food is not too hot or too cold—Alzheimer’s patients can’t always tell for themselves

• Keeping the meal simple—just a couple of foods at a time. Too much is overwhelming and will discourage a patient from eating.

• Being flexible—stick with personal preferences for cooking, and be prepared to add in new foods at any time

• Not limiting eating time—remind the patient that they must chew, and be prepared for meals to take an hour or more

• Eating your meals together—make it a social event

• Bearing in mind that the patient may not remember when they last ate—if they keep on asking you when it is breakfast time, for example, think about serving up several breakfasts instead of set meals

Independence is Key

If there is one thing that no one wants to lose, it’s their independence. This isn’t too much of a problem in the early stage of Alzheimer’s, but in the middle and late stages, it may be. The caregiver must allow the patient to be as independent as possible when it comes to mealtimes, but they must also be prepared to help when necessary.

• Serving plates and utensils can be adapted to make it easy for the patient to eat. Perhaps, try a bowl in place of a plate, use a spoon that has a bigger handle instead of a fork, or, if preferred, let the patient eat with their fingers—it may be a lot easier for all concerned.

• Instead of full meals, try serving finger foods instead—pieces of steamed broccoli or cauliflower, segments of orange, slices of apple, sandwiches, etc.

• Hold the spoon and show the patient how to eat—there is a chance they will copy you.

• Forget about being tidy—let the patient eat how they want, as long as they feed themselves. Tablecloths and clothes can be washed.

Safety First

As the disease progresses, problems can occur with difficulty in chewing and swallowing, leading to weight loss and choking. Keep these tips in mind when it comes to eating:

• Food should be prepared so it is easy to chew and swallow—cut food into small pieces, blend it if necessary, or serve only soft foods, such as scrambled eggs, for example.

• Watch out for any signs of choking—don’t serve foods that cannot be easily chewed, like raw carrot. Encourage the patient to sit upright with their head forward a little. If the head tilts backward, move it forward again. After each meal, check that there is no food left in their mouth, and make sure you are fully aware of the Heimlich maneuver in case you ever need to use it.

• Watch out for an appetite that suddenly decreases—if it does, you can change the food you are preparing, up the level of activity (a few more walks, perhaps), or try several smaller meals throughout the day. If the problem persists, consult a physician. Be aware that, as the patient becomes less mobile, he or she will not need so many calories.

• Never give the patient vitamins or other food supplements without consulting a physician first.

Chapter 7: Caring for An Alzheimer’s Patient—Early Stage

During the early stages of the disease, an Alzheimer’s patient will function more or less independently. He or she will still be able to take part in work and social activities and will still be able to drive, cook, and generally look after himself or herself.

As a caregiver, your role at this stage is vital. Not only are you providing much needed support—which is especially essential just after diagnosis—and companionship, you are also there to help come up with a plan for the future.

A person in the early stages of Alzheimer’s may display occasional difficulties in learning and thinking, but overall, it would be difficult for an outsider to spot that they have the disease. At this stage, a caregiver is more of a partner and a friend.

Your role is to provide help with daily activities, when needed. However, as people with the disease progress at different rates and exhibit different degrees of the symptoms, the amount of help a caregiver needs to provide is variable.

You will most likely have to help with the following:

• Remind them about upcoming appointments

• Help them to remember names and words

• Help them remember familiar people and places when they experience short-term memory loss

• Help them to manage their money and make sure bills are paid

• Help them to keep a track of their daily medications

• Help them with chores around the house

• Help with general organizing and planning

Make sure you identify their strengths and provide encouragement for them to remain independent for as long as possible. You can further help with this by having shared calendars and a copy of their medication schedule. Establishing a regular routine in place will benefit both of you.

You will also need to be there for emotional support. A person who is newly diagnosed with Alzheimer’s is going to be experiencing a range of emotions—anger, frustration, anxiety, and isolation. As the disease progresses, these feelings may get worse, and the patient will need your support and encouragement.

You will also experience many different emotions, including frustration, but please, be aware that you are never alone and there is always a support network waiting to help you. There are people who have or are going through the same thing.

Basic Tips

• Encourage independence

• Research and find out all you can about the disease

• Help make legal and financial decisions for the future

• Live in, if you can, and enjoy your time together; work as a team

• Remember, it won’t always be a good day—be prepared for the bad ones as well

• Set up your own support group

Chapter 8: Caring for an Alzheimer’s Patient—Middle Stage

The middle stages are the longest. A person with middle-stage Alzheimer’s can live for many years, but as the disease progresses, he or she will need a great deal more care. It’s going to be tough on you as a caregiver, so remember to maintain your own support network.

During this stage, the disease can make it very difficult for a patient to express coherent thoughts, and they may not be able to perform even the most routine tasks. Their thoughts and words may be confused, they might struggle with getting dressed, and they might exhibit signs of anger and frustration.

These changes affect everyone—not just the patient—so be prepared to enjoy the good days and roll with the bad days. You will always have your own support network when you need them.

You will need a greater degree of flexibility, and a much higher degree of patience. As the person’s abilities to function independently decline, you will have to take on more responsibility. You will need to adapt daily routines and think about the structure of each day.

As time goes by, you will develop skills in caring for the person, and you will figure out the best ways to deal with situations. You will find ways of modifying your activities to make life easier for both of you.

You must remember that you, as a caregiver, have look after yourself as well. Make sure you take breaks and do not isolate yourself—you need your friends around you! Find out about respite care and, if others offer their help, even if only for an hour, accept it.

Basic Tips

• Learn all you can about the middle stage of Alzheimer’s. Find out what to expect so you can prepare yourself.

• If your patient continues to repeat the same questions, do not get annoyed—keep your voice very calm

• Learn to respond to the emotion instead of the question—it may be that the patient just needs a degree of reassurance.

• If the patient is still able to read, make use of written reminders.

• Keep your eyes open for changes—if you notice any, check with the physician so that other problems can be eliminated.

Chapter 9: Caring for An Alzheimer’s Patient—Late Stage

Late-stage Alzheimer’s is the hardest stage o to care for. It can last anywhere from a few weeks to a few years, and is both physically and emotionally demanding. Around-the-clock care is required, and many tough decisions must be made.

As the disease progresses into the advanced stages, the patient’s needs will change significantly. He or she will normally:

• Experience difficulty with chewing and swallowing

• Require help to walk while they are still mobile—eventually, they will lose their mobility

• Need help with all aspects of personal hygiene and care

• Be highly susceptible to other illnesses and infections—pneumonia is very common

• Lose the ability to use words to communicate

The focus of your role now is on dignity and preserving quality of life for as long as possible. While the patient may not be able to talk or express their needs, the person is still there on the inside. This helps you to connect with the patient, even on a small level, throughout the final stages.

As this stage, the patient will experience much of life through their basic senses—use sound, touch, sight, smell, and taste to connect with him or her:

• Put on their favorite record or CD.

• Read to them, especially meaningful books.

• Look at photos together—most people have boxes full of memories.

• Try preparing a favorite meal.

• Massage with a favorite scented lotion.

• Brush their hair.

• If it’s a nice day, sit outside together.

If the disease progresses too fast, you may not be able to provide the care they need and, at this stage, you should discuss with the family and deicide if a facility would be best.

Hospices are good options, as their philosophy is focused on dignity, quality, and comfort, along with full care and support, for the patient and his or her family. Discussions about late-stage Alzheimer’s should really be made in the early stage, while the patient can still take part in the decision-making.

Eating

One of your most important tasks during this stage is to monitor eating. As the patient loses his or her mobility, less food will be required, but he or she may also forget about eating or experience a lack of appetite. You can add sugar to food and serve their favorites as ways of tempting them to eat, and the physician may prescribe supplements between meals.

You can help by:

• Making sure the person is seated comfortably in an upright position. Make sure they stay seated in that position for half an hour after eating, as this will help with digestion.

• Adapt the foods you serve—if swallowing is becoming a problem, serve soft foods, liquids, soups, juices, and milk.

• Encourage the patient to feed him or herself. Occasionally, they may need encouragement, so start by placing some food on a spoon, place his or her hand gently on the handle, and guide it to the person’s mouth. If he or she cannot use utensils, stick with finger foods.

• Help the person if needed—offer small bites and then a small drink. Remind them that they need to chew their food and swallow. Make sure nothing is left in their mouth between bites or sips of fluid.

• Encourage him or her to drink. Taste is one of the senses that diminish by this stage, so he or she may need to be reminded to drink and eat high water content foods.

• Keep an eye on his or her weight. Weight loss is a normal part of the progression of Alzheimer’s, but it could also be an indicator of insufficient nutrition or another illness. If you are concerned, speak to the physician.

Bodily Functions

One common aspect of the final stage of Alzheimer’s is a difficulty with using the toilet. The patient may have to be helped to the toilet and helped through the process. Incontinence is to be expected as well.

You can help by:

• Setting up a toilet schedule—make a note of when he or she uses the toilet and how much they have eaten or drunk. From this, you can work out a routine and plan a schedule. At some stage, a commode may be more advisable.

• Keep liquids to a minimum for at least two hours before bedtime, but make sure they drink enough during the day.

• If necessary, use incontinence products, such as pads or adult briefs.

• Keep an eye on bowel movements. It’s okay if they don’t move their bowels every day, but if three days go by without a movement, it could be an indicator of constipation. Add in natural laxatives to their food—prunes, high-fiber bread, bran, etc.

Health—Skin and Body

In the late stage of Alzheimer’s, a person is likely to become chair-bound or bedridden. This can cause the skin to break down, the joints to freeze or seize, and pressure sores to form.

You can help by:

• Helping them change position every few hours to improve their circulation and relieve. This also helps to keep them mobile.

• Learning the best way to lift him or her without causing injury to either of you. Never pull on their shoulders or arms.

• Keeping skin dry and clean—Use gentle movements to clean him or her, as the skin can become fragile and easily hurt. Use mild soap, and blot the skin dry rather than rubbing. Keep an eye out for any rashes or sores.

• Cutting down the risk of bedsores—Use pillows to protect elbows, heels, and hips.

• Keeping the joints moving—When a person is confined to bed or to a chair, joints can “freeze.” Research motion exercises that can help keep them from “freezing.”

Pneumonia and Other Infections

When a person becomes immobile in the late stage of Alzheimer’s, it makes them more susceptible to infection. You can help to prevent infections by:

• Keeping their mouth and teeth clean—Bacteria in the mouth can lead to pneumonia, so make sure you brush his or her teeth after every meal. If dentures are worn, take them out and clean them on a nightly basis.

• Apply treatment to any scrapes, grazes, or cuts right away—Use warm, soapy water and antibiotic cream. If the wound is deep, seek appropriate medical attention.

• Make sure they get a flu shot—flu leads to pneumonia if the immune system is down or the person is too weak to fight off the disease. Proper shots should be given every year.

Illness and Pain

In late-stage Alzheimer’s, the patient may find it difficult to let you know if they are in pain. If you suspect they may be in pain, you must call a physician.

You can recognize if your patient is in pain or is ill by:

• Looking for any physical signs—pale or flushed skin, dry gums, sores in the mouth, vomiting, fever, or swelling anywhere on the body.

• Don’t ignore nonverbal signs—although the patient may not be able to talk, he or she can still communicate through gestures, sounds, and facial expressions.

• Document any changes in behaviors—agitation, anxiety, shouting, and problems sleeping can all be signals that something isn’t right.

Palliative Care

Many people who are diagnosed with Alzheimer’s go on to enjoy life for many years after diagnosis. However, as it is a progressive disease, it is wise to make plans well ahead of the final stages.

Palliative care, more commonly known as end-of-life care, provides support for people with incurable diseases. Support is also provided for family and friends, and palliative care can be given at home, in a care home, a hospital, or a hospice.

For people who have reached this stage, a care team carries out an assessment to determine what is required to help the person feel comfortable and to slip away from life in dignity, in a place that they choose to be in.

At this final stage, you can offer emotional support and comfort in a number of ways:

• Company—talk to them, hold their hands, read, or watch movies together.

• Don’t talk of your own fears—if you need a shoulder or a listening ear, find someone else, but don’t burden the patient.

• Let the patient express their fears—it can help them come to terms with the situation. Don’t interrupt, and don’t argue with them.

• Encourage reminiscing—it helps them to be comfortable and to accept what is happening.

• Don’t shut them out—especially when it comes to the question of their care.

• Note and honor their final wishes—reassure them that you will, even if you disagree with them.

• Respect the need for privacy—dignity is important, and end-of-life care can sometimes take that away. Try to preserve theirs, and keep them as comfortable as possible.

When the patient has passed away, make sure you give yourself some much-needed time to think, to talk about what has happened and what you have been through, and to deal with your own grief.

Conclusion

Alzheimer's takes an enormous physical and emotional toll on everyone whom it touches, whether directly or indirectly. I hope this book provides you with ideas and suggestions to cope with this difficult disease, and I hope it helps you design a care plan so the Alzheimer’s patient in your life can embrace life’s pleasures and live as fully as possible.

Finally, I want to thank you for reading my book. If you enjoyed the book, please share your thoughts and post a review on the ebook retailer’s website. It would be greatly appreciated!

Best wishes,

Julia Chandler

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