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$21.95 Stock #29500 (ISBN 978-1-932529-50-0) 200 pages 5 1/2" x 8 1/4" Papercover © 2009 
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Listen to Lisa Snyder’s interview on Your Mental Health Talk Radio.
Excerpted from the Preface to the Revised Edition of Speaking Our Minds: What It's Like to Have Alzheimer's, Revised Edition by Lisa Snyder, MSW, LCSW Copyright © 2009 by Health Professions Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher. I wrote this book to illuminate and honor the varied voices of people with Alzheimer's 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 Alzheimer's, 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 Alzheimer's 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 Alzheimer's 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 Alzheimer's. We provided the bulk of our services
to families, knowing that by assisting the caregiver, ultimately the person
with Alzheimer's In the early 1990s, with advances in early detection of Alzheimer's, 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 introduced to the orchestra of Alzheimer's-one 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 Alzheimer's were becoming more pronounced. This book evolved out of my investigation into the subjective experience of Alzheimer's. In 1994, I began a small series of taped, in-home interviews with persons diagnosed with Alzheimer's. 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 Alzheimer's 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 person's 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 Bill's chapter. Although I describe the profound challenges Bill experiences in his loss ofspeech, 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 Alzheimer's 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 Alzheimer's. The ensuing progression of their symptoms and the outcomes
of their lives, however, are evidence enough 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 Alzheimer's. 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 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 Alzheimer's 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 Alzheimer's 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 Alzheimer's, 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 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 Alzheimer's 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 Alzheimer's 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
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