Speaking Our Minds: What It's Like To Have Alzheimer's, Revised Edition (Snyder Excerpt)

Copyright 2009 by Health Professions Press, Inc. All rights reserved.
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Contents
Foreword by Steven R. Sabat xi

Preface to the Revised Edition xvii
Listening
Part Two Speaking
Part One
1
15
Bea 17
Bill 36
Jean 59
Bob 82
Booker 99
Betty 111
Consuelo 133
Part Three Responding 151

Discussion Questions 167
Appendix: Selected Resources 169
Acknowledgments 173
About the Author 175
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Preface to the Revised Edition
w r o t e t h i s b o o k t o illuminate and honor the varied

voices of people with Alzheimers and to alleviate the personal
isolation that can accompany this disease. Although there is a
wealth of valuable scientific, professional, and caregiver literature written about Alzheimers, we are only beginning to explore
and make public a crucial perspective: the feelings, thoughts,
and experiences of the person diagnosed.
Since 1987, I have worked as a clinical social worker at the
University of California, San Diego (UCSD), Shiley-Marcos
Alzheimers Disease Research Center (ADRC). Funded by the
National Institute of Aging, this comprehensive research center is
one of the original 5 of the now 29 centers across the United
States dedicated to the understanding, treatment, and ultimate
prevention of Alzheimers disease. For many years, my work at the
research center focused on providing education, counseling, and
guidance to people taking care of a loved one with Alzheimers.
We provided the bulk of our services to families, knowing that by
assisting the caregiver, ultimately the person with Alzheimers
would benefit.
In the early 1990s, with advances in early detection of
Alzheimers, research participants began entering our center with
only mild symptoms. Better able to express their thoughts, they
began to seek information and share their concerns about their
condition. It seemed as if a whole new instrument was being
xvii
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introduced to the orchestra of Alzheimersone that I was not so

familiar with and that warranted attentive listening. Across the
United States and in other parts of the world, the voices of people with Alzheimers were becoming more pronounced.
This book evolved out of my investigation into the subjective
experience of Alzheimers. In 1994, I began a small series of
taped, in-home interviews with persons diagnosed with
Alzheimers. I deliberately chose people of different ages, ethnicities, and educational and professional backgrounds. All
acknowledged their diagnosis and were willing to offer their
reflections about the impact of Alzheimers on their lives. Our
conversations covered personal history; diagnosis; cognitive,
behavioral, and emotional symptoms; family and social interactions; and philosophical or spiritual perspectives. I transcribed
and edited the interviews to form narratives. Only in the case of
grammatical accuracy or clarity did I alter the wording of each
persons unique voice. To focus on the substance of their reflections, I purposefully omitted transcribing the stammers, pauses,
and fragments inherent in conversation. This is particularly
apparent, and perhaps controversial, in Bills chapter. Although
I describe the profound challenges Bill experiences in his loss of
speech, only a few verbatim sentences are provided to document his struggle. His chapter is more generously edited, with
his participation, so that readers can more readily learn from his
insightful messages.
In the decade that has passed since Speaking Our Minds was
first published, there can be little if no doubt that the persons in
this book speak to the experience of Alzheimers and not to a
related dementia or disorder. Initial responses from readers of
the book included comments from those who were in doubt that
these thoughtful, insightful, and articulate people could really
have Alzheimers. The ensuing progression of their symptoms
and the outcomes of their lives, however, are evidence enough
xviii
preface to the revised edition
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for those who may doubt the authenticity or accuracy of their

diagnoses. Yet in the face of a progressive and incurable condition, the testimonies of Bea, Bill, Jean, Bob, Booker, Betty, and
Consuelo endure and are timeless in their content and humanity. Their reflections are inspired from conversations that
occurred at distinct points in the continuum of their lives; discussions at other times likely would have yielded different narratives. Yet the stories of their lives never really end. They are
carried on by those who remember, those who have infused the
testimonies of these lives into their own, those who may be a little different in thought or action for having been touched in
some way by what these speakers sought to give, and whose own
minds speak differently now when they think of the word
Alzheimers. In this revised edition of Speaking Our Minds the
narratives of the speakers are unchanged. I have chosen to honor
their privacy and the continuing legacy of their messages by not
providing updates of their lives beyond what they chose to share
in the original interviews.
In my own responses to their narratives, I have made updates
as needed to factual information in order to reflect new knowledge in the field. The most significant revisions occur in Part
Three, Responding. Thankfully, there has been important progress in Alzheimers awareness and advocacy that has included
new partnerships with persons with earlier-stage symptoms and
greater sensitivity to more dignified and life-affirming care when
symptoms advance. There have also been promising developments
in research aimed at prevention and treatment of Alzheimers
that have warranted more detailed updates.
It has always been the intent of the speakers profiled in this
book to contribute to our collective understanding of Alzheimers, and since Speaking Our Minds was first published their
messages have been read in classrooms, living rooms, long-term
care homes, support groups, and other settings where readers
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Page xx
have opened their own minds to listen. This revised edition aims
to further dialogue, reflection, and learning by providing questions at the end of the book that can be used for individual
reflection or as a guide for group discussion.
My professional world is in an academic research setting.
This book, however, is not an academic manuscript, nor is it
based on a study with scientific methods and research outcomes. Speaking Our Minds expresses the thoughts, feelings,
concerns, and experiences of seven persons with Alzheimers
who hope to teach, lend insight to, and enhance understanding
in those who are willing to open their minds and listen. This project would not have been possible without the generosity,
courage, and trust of Bea and Joe; Bill and Kathleen; Jean and
her family; Bob and Erika; Booker and Brenda; Betty and Kurt;
and Consuelo. They made invaluable contributions to this text
and to my life. And to all those with Alzheimers and to their families, who over the years have been my teachers and who have
spoken their hearts and minds, I give my continued gratitude and
respect. You have all given so much. This book is one small offering in return.
xx
H e a lt h / A g i n g
Snyder
Storytelling is the best way to learn, and the accountsin this book
render insight into the experiences of Alzheimers disease and teach us new
ways to provide empathetic, creative, and successful care.
Speaking Our Minds is a wonderful resource for professionals
and family caregivers. Highly recommended!
David Troxel, MPH, co-author of The Best Friends Approach to Alzheimers Care
Peter V. Rabins, M.D., author of The 36-Hour Day

and Professor of Psychiatry, The Johns Hopkins University School of Medicine
Inspiring reflections abound in these perspectives and narratives.

This book is for everyone living in a world with Alzheimers.
Speaking Our Minds shows us the pain, humanity, and courage of individuals
with Alzheimers disease. It is a much-needed and much-appreciated book.
Lisa P. Gwyther, MSW, co-author of The Alzheimers Action Plan and Education Director,
Bryan Alzheimers Disease Research Center, Duke University Medical Center
The uniqueness of each persons experience and symptoms
University of California,
What coping strategies people use to face the changes and

losses in their lives
San Diego, where she
The barriers people encounter to living full and dignified lives
with Alzheimers and
Effective ways to identify with and listen to people

with Alzheimers
their families since 1987.
Speaking Our Minds will transform the way you look at

Alzheimers and how you interact with those who have it.
www.healthpropress.com
MSW, LCSW, is a
clinical social worker
and Director of the
Quality of Life Programs
for the Shiley-Marcos
Alzheimers Disease
Research Center at the
has counseled people
Revised
Edition
Lisa Snyder,
Speaking Our Minds
Speaking Our Minds broke new ground when it first published

in 1999. This timely revised edition continues to provide
a remarkable window into a disease that is too often
misunderstood. Through intimate interviews and insightful
explanations, dementia expert Lisa Snyder provides an
unparalleled view into the everyday lives of seven diverse
individuals and sheds light on the many facets of the Alzheimers
experience for professional or family caregivers, friends, relatives,
students, and anyone who has early-stage dementia. This rich
text offers the opportunity to learn more about

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Copyright 2009 by Health Professions Press, Inc. All rights reserved.

Foreword by Steven R. Sabat xi

Part Three Responding 151

Copyright 2009 by Health Professions Press, Inc. All rights reserved.

Preface to the Revised Edition

w r o t e t h i s b o o k t o illuminate and honor the varied

Copyright 2009 by Health Professions Press, Inc. All rights reserved.

introduced to the orchestra of Alzheimersone that I was not so

preface to the revised edition

Copyright 2009 by Health Professions Press, Inc. All rights reserved.

for those who may doubt the authenticity or accuracy of their

Copyright 2009 by Health Professions Press, Inc. All rights reserved.

preface to the revised edition

Copyright 2009 by Health Professions Press, Inc. All rights reserved.

Peter V. Rabins, M.D., author of The 36-Hour Day

Inspiring reflections abound in these perspectives and narratives.

The uniqueness of each persons experience and symptoms

What coping strategies people use to face the changes and

San Diego, where she

The barriers people encounter to living full and dignified lives

with Alzheimers and

Effective ways to identify with and listen to people

their families since 1987.

Speaking Our Minds will transform the way you look at

has counseled people

Speaking Our Minds

Speaking Our Minds broke new ground when it first published

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