The 36-Hour Day New and Updated from Johns Hopkins University Press

THE 36-HOUR DAY A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias

seventh edition, also in large print edition NANCY L. MACE, MA, and PETER V. RABINS, MD, MPH For 40 years, The 36-Hour Day has been the leading work in the field for caregivers of those with dementia.

Written by experts with decades of experience caring for individuals with memory loss, Alzheimer’s, and other dementias, the book is widely known for its authoritativeness and compassionate approach to care.

Featuring everything from the causes of dementia to managing its early stages to advice on caring for those in the later stages of the disease, it is widely considered to be the most detailed and trusted book available.

Highlighting useful takeaway messages and informed by recent research into the causes of dementia, this new edition has been completely updated. It features • brand-new content on everything from home care aides to useful apps to promising preventative techniques and therapies

• practical advice for avoiding caregiver burnout—plus tips for when and how to get additional help

• a completely new two-column design that allows readers to quickly access what they need

The central idea underlying this indispensable book—that much can be done to improve the lives of people with dementia and of those caring for them—remains the same.

The 36-Hour Day is the definitive dementia care guide.

With over 3.5 million copies sold, the bestselling guide to understanding and caring for people with dementia is now completely revised and updated!

Praise for previous editions

“Thorough and compassionate, offering accessible information and practical advice, The 36-Hour Day is a necessary resource for families living with dementia. Still the gold standard, this book is the trusted reference that families turn to first—and over and over—for guidance and support in caring for someone with Alzheimer’s disease.”—Lisa Genova, author of Still Alice “Excellent guidance and clear information of a kind that the family needs . . . The authors offer the realistic advice that sometimes it is better to concede the patient’s frailties than to try to do something about them, and that a compassionate sense of humor often helps.”

—The New York Times

“For carers and families, but equally should be on the reading list for nursing and medical students. Every ward should have a copy as nursing and clinicians can learn so much from this and ensure a high standard of care for these patients.”—Nursing Times “For a reader who wants a book about Alzheimer’s and caregiving, this is still the one to buy. Recommended.”—Choice “The best guide of its kind.”—Chicago Sun-Times “Continues to be the ‘bible’ of recommendation for any caregiver whose family member suffers from dementia.”—Bookwatch­

TABLE OF CONTENTS Foreword Preface 1. Dementia 2. Getting Medical Help for the Person Who Has Dementia 3. Characteristic Behavioral Symptoms in People Who Have Dementia 4. Problems in Independent Living 5. Problems Arising in Daily Care 6. Medical Problems

7. Managing the Behavioral and Neuropsychiatric Symptoms of Dementia 8. Symptoms Associated with Mood Change and Suspiciousness 9. Special Arrangements If You Become Ill 10. Getting Outside Help 11 . You and the Person Who Has Dementia

13. Caring for Yourself 14. Financial and Legal Issues 15. Long-Term Care Arrangements 16. Preventing and Delaying Cognitive Decline 17. Brain Disorders and the Causes of Dementia 18. Research in Dementia Index

12. How Caring for a Person Who Has Dementia Affects You

Before she retired, NANCY L. MACE, MA (CONCORD, CA), was a consultant to and member of the board of directors of the Alzheimer’s Association and an assistant in psychiatry and coordinator of the T. Rowe and Eleanor Price Teaching Service of the Department of Psychiatry and Behavioral Sciences of the Johns Hopkins University School of Medicine. PETER V. RABINS, MD, MPH (TOWSON, MD), is a professor of the practice in the Erickson School of Aging Management Services at the University of Maryland, Baltimore County. The author of Is It Alzheimer’s? 101 Answers to Your Most Pressing Questions about Memory Loss and Dementia, he was the founding director of the geriatric psychiatry program and the first holder

of the Richman Family Professorship of Alzheimer Disease and Related Disorders in the Department of Psychiatry and Behavioral Sciences of the Johns Hopkins University School of Medicine.

T co hor ith m o u pr pa gh ac ss tic ion and al a ad te vi ce . w

CHAPTER 3

Characteristic Behavioral Symptoms in People Who Have Dementia

I

n Chapters 3 through 9 we discuss many of the problems that may occur in caring for a person who has dementia. Although as yet nothing can be done to cure some illnesses that cause dementia, much can be done to make life easier for you and the person who has dementia. The suggestions we offer come from our clinical experience and the experiences that family members have shared with us.

Each individual, each family, and each caregiver are different. You may never experience many of these problems. The problems you will face are influenced by the nature of the specific disease causing the dementia, by your personality, by the personality of the

person who has dementia, and, often, by other factors such as where you live.

We do not want you to read through this section as if it were a list of what lies ahead of you. It is a comprehensive list of potential problem areas for you to use as a reference when a specific problem arises.

Do not read through this section as if it were a list of what lies ahead of you. It is a comprehensive list of potential problem areas for you to use as a reference when a specific problem arises. Much can be done to make life easier for you and the person who has dementia.

The Brain, Behavior, and Personality: Why People Who Have Dementia Do the Things They Do

T

he brain is a complex, mysterious organ. It is the source of our thoughts, our emotions, and our per-

sonality. Injury to the brain can cause changes in emotions, personality, and the ability to reason. The illnesses that 20

cause dementia are biological: many of the mental functions and behavioral changes seen in dementia arise from structural and chemical changes in the person’s brain. Most illnesses that cause dementia do their damage gradually, so the effects are not seen suddenly as they are when someone has a major stroke or head injury. Consequently, the behavior of a person who has dementia often seems puzzling. It is not always evident that many of the noticeable symptoms (changes in personality, for example) are the result of a disease, because the person often looks well. In contrast, the behavioral problems seen in a brain disease that begins suddenly are often easier to link to that condition.

You may wonder which behaviors are caused by the disease and which are deliberate or willful. Sometimes, family members disagree or even argue about this. In the following chapters we discuss some of the behavioral symptoms you may face and suggest ways you can respond. Understanding that the damage to the brain and an environment that is not adapted to the person’s needs are common causes of behavioral symptoms will help you cope with them.

The brain is composed of billions of microscopic neurons, or nerve cells, and their many connections to other neurons is one reason the brain is a very complex organ. All the tasks of the brain—thinking, talking, dreaming, walking, listening to music, and hundreds of others—are the result of how these cells communicate with one another.

Different parts of the brain perform different tasks. When a person has a

stroke and cannot speak, we know that the stroke occurred in the speech area of the brain and destroyed cells that are necessary for the person to express themselves. A stroke may cause extensive damage, but often the damage is limited to only a single area of the brain.

In many of the illnesses that cause dementia, damage occurs in multiple areas and thereby affects many aspects of mental function. While a stroke does all its damage at once, Alzheimer disease gradually does more and more damage. This means that many cognitive abilities are damaged but in an uneven fashion. As a result, the person is able to do some things but not others.

For example, they may be able to remember things from long ago but not from yesterday.

People who have brain damage may do things that don’t make sense to us Our brains do thousands of tasks, and we are usually not aware of most of them. We assume that other people’s brains, like ours, are working as they should—but with a person who has dementia we cannot make this assumption. When the person does something odd or inexplicable, it is usually because some part of their brain has failed to do its job. In addition to controlling memory and language, the brain enables us to move our various body parts, helps filter out the things we don’t need to pay attention to, gives feedback on the things we do, enables us to recognize familiar objects, and coordinates all the activities it is carrying ThE BRAIN, BEhAvIOR , AND PERSONALITY

21

staff that the person has dementia and cannot order for themselves.

Consider the hobbies and interests the person had before they became ill, and look for ways they can still enjoy these. Often, for example, people who liked to read will continue to enjoy leafing through newspapers, magazines, and books after they can no longer make sense of the text. Sometimes a person puts away a hobby or interest and refuses to pick it up again. This often happens with something a person had done well before but now has difficulty with. It can seem degrading to encourage a person to do a simplified version of a once mastered skill unless they particularly enjoy it. It may be better to find new kinds of recreation.

Everyone enjoys experiencing things through the senses. You probably enjoy watching a brilliant sunset, smelling a flower, or tasting your favorite food.

People who have dementia are often more isolated and may not be able to seek out experiences to stimulate their senses. Try pointing out a pretty picture, a singing bird, or a familiar smell or taste. Like you, the person will enjoy certain sensations more and others less.

Many families have found that people who have dementia enjoy a ride in the car.

People who have always enjoyed animals may respond with delight to pets.

Some cats and dogs seem to have an instinctive way with people who have cognitive impairments.

Some individuals enjoy a stuffed animal or doll. A stuffed toy can be either childish and demeaning or comforting; much depends on the attitude of the people around the person 78 PROBLEMS ARISING IN DAILY CARE

who has dementia. Our opinion is that people should be allowed to have stuffed toys if they seem to enjoy them.

Touch can be an effective way of communicating long after the person can no longer understand what is being said As the dementia progresses and the person develops trouble with coordination and language, it is easy to forget their need to experience pleasant things and to enjoy themselves. Never overlook the importance of hand holding, touching, hugging, and loving. Often when there is no other way we can find to communicate with a person, a simple touch or hug will elicit a positive response. Touch is an important part of human communication. A backrub or a foot or hand massage can be calming.

You may enjoy just sitting and holding hands. It’s a good way to share some time when talking has become difficult or impossible.

Meaningful Activity Much of what we do during the day has a purpose that gives meaning and importance to life. We work to make money, to serve others, to feel important. We may knit a sweater for a grandchild or bake a cake for a friend. We wash our hair and clothes so we will look nice and be clean. Such purposeful activities are important to us—they make us feel useful and needed.

When the person who has dementia is unable to continue their usual activities, you need to help them find things to do that are important to them and

H t os m s e th tion . er es ve sw qu ha an on rs ps m ve el m gi co are c

still within their abilities. Such tasks should be meaningful and satisfying to them—whether they seem so to you or not. For example, folding and refolding towels might have meaning for some people but not for others. Seeing themselves as “volunteers” rather than as “patients” is important to some people.

This provides both a sense of worth and the benefit of participation. The person may be able to spade a garden for you or the neighbors, or to peel vegetables or set the table when they are no longer able to prepare a complete meal. People can wind a ball of yarn, dust, or stack magazines while you work. Encourage the person to do as much as they can on their own, although you can simplify tasks for them by breaking them down into steps or doing part of the task yourself.

Most experts urge people who have dementia to exercise or do things that keep their minds active. There is some evidence that staying mentally and

physically active can help postpone the onset of dementia for people who do not have thinking impairment. In addition, once an illness that causes dementia has begun, keeping physically and mentally active may slow progression. Even more importantly, it can improve the quality of life of the person who has dementia.

Pushing people to do things that upset them is not helpful It is important to consider the effect that any particular activity has on the person. Activities should be enjoyable, even if they are simple, such as petting the dog, talking with others, taking a walk, or sitting outside. If the person repeatedly shows signs of being upset, including irritability, stubbornness, crying, or refusing to do the activity, then it has become a stressor rather than a pleasure. Pushing a person to do things that upset them is not helpful.

Personal Hygiene

T

he personal care needs of people who have an illness that causes dementia depend on the type and extent of the brain damage. They may be able to care for themselves in the early stages of the disease but gradually begin to neglect themselves and eventually need total help.

Problems often arise over getting people to change their clothes or take a bath. “I already changed,” the person may tell you, or they may turn the

tables and make it sound as if you are wrong to suggest such a thing.

• A daughter says, “I can’t get her to change clothes. She has had the same clothes on for a week. She sleeps in them. When I tell her to change, she says she already did or she yells at me, ‘Who do you think you are, telling me when to change my clothes?’ ” • A husband relates, “She screams for help the whole time I am bathing her. She’ll PERSONAL hYGIENE

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A J O H N S H O P K I N S P R E S S H E A LT H B O O K

PUBLICATION DATE AUGUST 2021

3.5

The 36-Hour Day

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A Johns Hopkins Press Health Book 360 pages 6⅛ x 9¼ 978-1-4214-4171-9 978-1-4214-4170-2

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7th Edition

A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias

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Other Books for Your Dementia Care Bookshelf

Also by Peter V. Rabins 160 pages, 5½ x 8½ 978-1-4214-3640-1

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A medical expert answers your common questions about memory loss, causes of dementia, diagnosis, prevention, treatment, and more.

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