The Best Friends Approach to Alzheimer's Care By Virginia Bell, M.S.W., and David Troxel, M.P.H.

Excerpted from the Introduction of The Best Friends Approach to Alzheimer’s Care, by Virginia Bell, M.S.W., and David Troxel, M.P.H.

Copyright © 1997, 2003 by Health Professions Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Introduction

The Best Friends Approach to Alzheimer’s Care reflects a growing optimism in the field of Alzheimer’s care that much can be done to improve the lives of people with the disease and to transform caregiving from a terrible burden to care that is manageable. The book represents the development of the first comprehensive model of care, which is easy to understand and learn. With the Best Friends model of care, readers will be able to develop the know-how, what we call the "knack," of responding to any situation. This book demonstrates that the secret of good Alzheimer’s care is not necessarily in what is done, it is in the doing.

The authors have over 35 years of combined national and international experience at university research centers, Alzheimer’s Association chapters, adult day services centers, support groups, classrooms, and home settings. We have lectured in dozens of states and 17 countries. We have spent thousands of hours, one-on-one, with persons who have Alzheimer’s disease and their caregivers. We have been through the frontier days of Alzheimer’s care.

In the early 1980s almost no educational materials were available, and there were even fewer services for individuals with dementia and their families. As that decade progressed, a network of family support groups developed into a strong and vital national Alzheimer’s Association. In 1987 the respected Robert Wood Johnson Foundation committed millions of dollars to a national initiative to study adult day services for people with dementia and to encourage their development.

In the 1990s there was a continued expansion of adult day services programs, continued growth of the Alzheimer’s Association and its chapter network, and a growing trend to provide more services to and therapeutic interventions for the individual with dementia. More and more people are being diagnosed with Alzheimer’s disease very early; this trend will change the face of Alzheimer’s care. A milestone came in late 1994 when former U.S. President Ronald Reagan courageously announced his diagnosis of Alzheimer’s disease.

As we enter the new century, promising advances in medications and even ways to potentially prevent Alzheimer’s disease are near. We may soon view Alzheimer’s as a treatable disorder.

In looking back, we can celebrate our successes. Enormous strides in research, diagnostic standards, family services, and public awareness have been made. Yet, despite these successes, many families and professionals we talk to are in trouble. They tell us that problem behaviors still create enormous difficulties, that nursing assistants are inadequately trained, that planned activities fall flat, and that it is still a struggle to make it through the day.

The Best Friends model addresses these problems by going beyond a laundry list of tips. Readers will learn a model of caregiving, a way of approaching the challenges, that will work for the betterment of both family and professional caregivers.

This book differs from other books in the field in a number of ways. First, the authors have adopted a positive, optimistic outlook. We believe that too much attention has been paid to the "tragic" side of Alzheimer’s disease; our collection of books and pamphlets on Alzheimer’s disease includes negative labels such as "victim," "the funeral that never ends," "the mean stage," "the living death," and "the worse fate." We understand the enormous weight that Alzheimer’s disease places on caregiving individuals and families. This is a terrible disease. Yet, by dwelling on the negative, it is too easy to victimize people with the illness and settle for lower standards of care. Caregivers, too, can be victimized by this attitude, this assumption that they are all helpless and hopeless.

Second, all family stories mentioned in this book are real, and include the full names of the people involved. We do this to reduce the stigma of Alzheimer’s disease, to bring it out of the darkness. We worried that families would be uncomfortable with this technique, but when we asked them for written permission to tell their stories, they all said yes. They did this to remember or honor their loved ones and to support a greater understanding of Alzheimer’s disease. We commend them for their openness and encourage the reader to learn more about the family members in Appendix C.

Third, the focus of this book is on individuals with Alzheimer’s disease, what they are experiencing, and how to help them. By putting the spotlight on the individual with dementia, we are not in any way negating the impact of Alzheimer’s disease on the caregiver. We know that it affects the whole family and that caregivers are often at great risk for premature disability and death. However, if we can improve the quality of life and behavior of people with Alzheimer’s disease, by definition we have also improved the life of the caregiver. Alzheimer’s disease care need not be debilitating.

This book covers the full spectrum of Alzheimer’s care using the Best Friends model.

Chapter 1 describes the experience of Alzheimer’s disease. We believe it is important to understand what it is like to have Alzheimer’s disease to become a better, more empathetic, caregiver.

Chapter 2 offers a short primer on Alzheimer’s disease called "The Basics."

Chapter 3 tells the reader how to make an assessment of the individual’s strengths and abilities. This assessment is important for setting appropriate expectations and planning good care.

Chapter 4 introduced the Alzheimer’s Disease Bill of Rights. It is the underlying philosophy behind the book and argues that we must all strive for the best quality of care and quality of life for the person with dementia.

Chapter 5 reveals how the art of good friendship teaches us much about good Alzheimer’s care. It suggests that recasting relationships can make caregiving easier and more rewarding for families and professionals. In this chapter we introduce many of “our friends,” persons with Alzheimer’s disease or related disorders whose stories we tell.

Chapter 6 reviews the importance of the affected individual’s life story, cultural background, and traditions to good-quality care.

Chapter 7 brings together all of the ingredients of the Best Friends model of care and introduces our concept of the "knack" of caregiving.

Chapter 8 describes the knack of communicating. We offer a number of “dos” and “don’ts” that will be helpful to the caregiver.

Chapter 9 examines the knack of activities, noting the importance of getting away from "programming activities" and, instead, making them a natural part of each day. This chapter is of particular interest to adult day centers and long-term care facilities, but can also help home caregivers.

Chapters 10, 11, and 12 present examples of the Best Friends model in action, showing how it can be applied to home care, adult day center care, and care in long-term care facilities. Of particular interest to adult day centers and long-term care facilities is the discussion in Chapter 11 about involving volunteers in Alzheimer’s care.

Chapter 13 challenges caregivers to be their own best friends. Taking even simple steps can reduce stress and strain. Even better, the Best Friends model can bring joy back into the caregiver’s life.

Chapter 14 offers a few final thoughts on being a Best Friend to a person with Alzheimer’s disease, and shows how negative feelings, which are normal, can be turned into positive feelings. Light can come out of darkness.

Appendix A contains a listing of national and local resources, including web sites, for individuals with dementia and their caregivers. Appendix B provides a list of suggested readings. Appendix C offers brief biographies of the individuals with Alzheimer’s disease or related disorders whose stories we tell in this book.

We believe this book will help readers in a number of ways: Families reading this book will gain a renewed sense of hope. The Best Friends model encourages families to rethink their approach to care; techniques and suggestions are offered to invigorate their efforts to offer effective, loving care.

Nursing facility staff reading this book will find easy, simple-to-use methods in the care of residents with dementia. The Best Friends model lends itself to staff training and can be easily learned and understood by today multicultural staff, who may also have differing educational backgrounds. Included are ideas for activities that can be used during almost any interaction with a resident. Because the Best Friends model emphasizes the importance of an upbeat, positive approach, the model also will improve staff morale and family satisfaction.

Adult day center staff who adopt the Best Friends model will learn methods that can enrich center programming and attract greater numbers of volunteers. The book also discusses how the Best Friends model can help centers with one of their most vexing problems — convincing families to utilize this needed service.

Finally, individuals diagnosed with emerging Alzheimer’s disease may gain insight from reading this book. We hope that these readers will share our vision that their quality of life can still be good even when facing the enormous challenge presented by Alzheimer’s disease.

In conclusion, we would like to draw readers’ attention to the following points:

1. Although this book addresses Alzheimer’s disease, the concepts apply to any individual with irreversible dementing disorder. Thus individuals and families coping with multi-infarct dementia (mini-strokes), frontal lobe dementia, or dementia caused by Parkinson’s disease, AIDS, or other disorders can benefit from the Best Friends model.
   
   
2. This book does not examine research and medical treatment issues in depth, in part because information in these areas changes rapidly in the contemporary research environment. Local Alzheimer’s Association newsletters, reputable web sites, and national Alzheimer’s Association publications are the best  sources for current information on research and treatment. We do offer information on the basics of Alzheimer’s disease in Chapter 2 to provide the reader with an understanding of fundamental principles of these issues.
   
   
3. The authors believe that the literature on Alzheimer’s disease has long been overdependent on the use of “stages” to describe the disease. Alzheimer’s disease is a process, a continuum of illness. It is not helpful to pigeonhole someone into any one stage because every case is different. As we once heard a neurologist say, “If you’ve met one person with Alzheimer’s disease, you only met one person with Alzheimer’s disease.”
   
   
4. We coin a new phrase in this book, emerging Alzheimer’s disease, to describe the growing number of people with Alzheimer’s disease who are diagnosed early enough to be able to have a significant say in their care and future. We describe the progression of the disease in a simple fashion as emerging, early, middle,  and late Alzheimer’s disease.
   
   
5. We describe nursing facilities or assisted living homes as long-term care facilities or simply as facilities. We describe adult day care centers as adult day services, adult day centers, or simply centers.
   
   
6. All authors writing about dementia struggle with the question of how to describe the man or woman with dementia. We reject labels such as “Alzheimer’s victim,” “memory-affected individual,” and “Alzheimer’s person” because they collapse the person into the pathology of the disease. The word “patient” only applies to the settings in which an individual is being seen by a medical professional. Neutral phrases such as “the person with Alzheimer’s disease,” “those with dementia,” and “the person with memory loss” become bulky and laborious for the reader. In this book, we will use person(s) to describe individual(s) with Alzheimer’s disease or a related disorder. We hope this will be more economical to the reader than other phrasing. At the same time, this term gently reminds us that there is a person beneath the cloak of dementia, one who has feelings, one who has led a life full of rich experiences, and one who deserves dignified care.

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