Introduction

Receiving a diagnosis of Alzheimer’s disease or other dementia is devastating news, both for the person being diagnosed and for his or her friends and family. Dementia gradually robs individuals of their memory, judgment, language, and eventually their physical health. It takes away a person’s independence. Dementia also can prove devastating for husbands, wives, partners, adult children, and other family members. Caring for a person with dementia may mean giving up your career, balancing the needs of your own children with dementia care, or postponing dreams of “the golden years” of retirement to face the often physically and emotionally stressful task of providing supervision, support, and care.

Yet, there is reason for optimism. A worldwide research effort is under way to conquer Alzheimer’s disease and other dementia. More support groups, educational programs, day centers, and specialized residential and in-home support programs are being developed all the time. We are also learning so much about how to interact with the person with dementia. Contrary to what many people believe, much can be done to improve the lives of people with Alzheimer’s disease to help them feel safe, secure, and valued—to help them live a life with dignity—and, in turn, create a more meaningful and manageable experience for caregivers.

When this book was first published in 2002, it represented the first comprehensive approach or philosophy of care written just for families. The book had a simple premise—that what a person with dementia needs is a best friend, someone who understands, is supportive, communicates, and encourages activity and engagement. The Best Friendstm approach and this book enjoy continued popularity because the philosophy it presents is easy to learn, understand, and apply to your caregiving experience. This approach has helped thousands before you and will help you recast or rethink your own life supporting a friend or family member with dementia, transforming caregiving from a burden to a more rewarding and successful experience with fewer frustrations. Learning the Best Friends approach will teach you what we call “the knack” of providing good care; the art of doing difficult things with ease.

The Best Friends approach will give you valuable insights and skills for your caregiving journey. Irene Elam, who embraced the Best Friends approach in her husband’s care, sums up her experience in this way: “From early on, I made up my mind to do three things: I wasn’t going to raise my voice, I wasn’t going to argue, and I was going to keep my sense of humor any way I could.” You can begin to travel the same journey that Irene traveled. Let’s take a look at the Best Friends approach:

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The Best Friends approach was first described in a book originally published in the late 1990s, The Best Friends Approach to Alzheimer’s Care (Health Professions Press, 1996), written for professionals working in long-term care settings. Much to our surprise, however, the first comment we received after the book was published was not from a nursing home administrator or a day center director, but from a woman with early-stage Alzheimer’s disease. Ruth McReynolds told us that our book had helped her become more accepting and optimistic about her future. Since that time, we’ve met many persons like Ruth who have expressed their appreciation for the inherent dignity of the Best Friends approach.

An early advocate for our approach was Elayne Brill, founder of the Alzheimer’s Association in the greater San Francisco Bay Area, who claims to have “lived through the dark ages of Alzheimer’s.” When she cared for her husband George in the 1980s there was almost no public information or support. “I wasn’t prepared to be open to a more positive approach to this terrible disease, but I embraced Virginia and David’s Best Friends philosophy. It all began to make sense. I never thought I’d say it, but you can come out on top.”

We knew that the Best Friends approach wasn’t just for professional caregivers, but for family caregivers like Elayne as well. A Dignified Life was written to speak more directly to the circumstances and needs of families that are thrust into a caregiving role by this disease.

The stories of the transformative effects of the Best Friends approach are boundless. Rita West Paustian’s is just one example.

I struggled when my mom was diagnosed, as I live in Auburn, Washington, and felt increasingly guilty because I wasn’t there to help my Dad [in Kansas]. Also, I realized I was “losing” my mother. On one of those visits, my Dad gave me information about Best Friends, which quickly became my “bible.” I had often wondered how Dad seemed to know just how to engage my mother so that she continued to feel needed and loved. . . . He was putting your ideas into practice. My mother’s life, as well as ours, was enriched during that difficult time thanks to everything we learned about being a Best Friend.

Putting the Best Friends approach into practice helped Rita’s father be a more empathetic and successful husband, and it helped Rita make the most of her visits with her mother.

Best Friends has been embraced in formal care settings and by professionals around the world. Programs in Australia, Brazil, Canada, Finland, Germany, Great Britain, Hungary, Italy, Lebanon, South Africa, and Taiwan are among many other countries using our approach to care. The books have been translated from English into seven languages. In the United States, a number of state governments now consider the Best Friends approach a “best practice” and are providing Best Friends training to long-term care providers and families. Alzheimer’s Association chapters and groups ranging from Maine to Oregon have embraced the philosophy of care, offering conferences, workshops, online programs, and training curricula. Long-term care providers including residential care companies and in-home providers have also adopted the philosophy. EMTs and paramedics have received Best Friends training; it helps them make a connection and provide reassurance and comfort even in times of crisis. Dr. Nori Graham, a physician and past chair of the London-based organization Alzheimer’s Disease International, sums up quality dementia care in a way that is very much in keeping with the spirit of the Best Friends approach: For Dr. Graham, the key to successful dementia care is “informed love,” and success comes from knowledge mixed with a caring, gentle attitude and approach.

This revised edition of A Dignified Life: The Best Friends Approach to Alzheimer’s Care contains insights from individuals who are using the Best Friends approach every day. It also reflects new ideas and trends in dementia care. The new edition:

  • Reflects upon contemporary ideas and trends that have emerged since its original publication in 2002. We now know so much more about the “other dementias” (for example, vascular dementia, frontotemporal dementia, Lewy body and Parkinson’s-related dementia, and others). This book expands its discussion of these dementias.
  • Offers more tips and suggestions on how to manage behaviors that are challenging.
  • Expands upon the benefits of engagement and activity—both planned and spontaneous. We now know that activities including exercise and music along with lifelong learning are good for all of us, including persons with dementia.
  • Offers new stories from many of the persons with dementia and their families we have met during the past ten years, including some professionals who have embraced this philosophy of care in their own work.
  • Explains new resources and services for families, including the rise in hospice care as a key service for persons with dementia.
  • Describes surprising ways to use the Internet for activities and engagement.
  • Introduces the Best Friends website (www.bestfriendsapproach.com), which can update you on our work and provide a forum for our readers to share their own success stories and questions.
  • Updates suggested online and community resources.

A Dignified Life is written to help you rethink your approach to care, learn how to be a Best Friend to the person you are concerned about, and approach your role with more confidence, skill, and success. By applying what you learn from reading this book, we hope that you and your loved one will soon discover that, truly, a Best Friend can provide the best care.

The book draws from a wealth of experience working directly with people with dementia and their friends and families, including our work with local chapters of the national Alzheimer’s Association, a university research center, dozens of in-home and residential and day center care providers, and the Best Friends Day Center program in Lexington, Kentucky. The Best Friends Day Center, opened in 1984 under the name The Helping Hand Day Center, was one of the first dementia-specific adult day programs created in the country and has become a model program, in large part because it embodies the Best Friends philosophy. Many of the examples in this book are drawn from our experiences with the center’s participants and their families.

There are a number of important ways in which this book differs from other books you can find on Alzheimer’s care.

First, the authors have adopted a positive, optimistic outlook. We share many success stories that will help you learn how to avoid falling into the trap of hopelessness and helplessness. In dementia care there are typically good days and bad days. The Best Friends approach will help you have more good days.

Second, all 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 telling their stories, but when we asked them for written permission they all agreed. They did this to remember or honor their loved ones and to support a greater understanding of dementia. We commend them for their openness and encourage the reader to learn more about the real people we feature by reading their short “Biographies” at the end of the book.

We would like to draw the reader’s attention to the following points:

  • While much of the public focus has been on Alzheimer’s disease, this book looks at “Alzheimer’s disease and other dementia” and we use that language throughout. The word dementia is an umbrella term encompassing many diseases and disorders that impact thinking, language, memory, and brain health. The Best Friends approach applies to any dementia.
  • We introduce a term that may be new for readers of this book who are familiar with the commonly used word caregiver. In this book we choose to use the phrase care partner to describe those friends and family members who are there for the person with dementia. This term is in wide use internationally and is making its way into the United States. It reflects a contemporary view that the person with dementia still has much to offer if given the opportunity and in the right way; they can be a “partner” in their own care. We understand that it may not always be an equal partnership—caregivers often have to do most of the chores, driving, cooking, helping the person in the shower, and much more—but the Best Friends approach will help you build cooperation so that care is less one-way.
  • All authors writing in this field struggle with describing the man or woman with dementia. In this book, we use person(s) to describe individual(s) with Alzheimer’s disease or other dementia. 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 a dignified life.

As we have revised this edition, one disappointment has loomed large. While basic research has advanced, no breakthrough drugs have emerged. The brain is proving an amazing, but complex organ. Solving its mysteries and finding truly effective ways to prevent, treat, or cure Alzheimer’s disease and other dementia still elude us.

Until we can create a world without dementia, the Best Friends approach continues to work its magic in homes and programs around the world. We hope that it also supports you and your journey.

Virginia Bell, MSW

David Troxel, MPH

August 1, 2012