Living with Alzheimer’s: Managing Memory Loss, Identity, and Illness

337 Pages·2016·1.73 MB·English

by  Renée L. Beard

Living with Alzheimer’s
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Living with Alzheimer’s
Managing Memory Loss,
Identity, and Illness
Renée L. Beard
NEW YORK UNIVERSITY PRESS
New York and London
NEW YORK UNIVERSITY PRESS
New York and London
www.nyupress.org
© 2016 by New York University
All rights reserved
References to Internet websites (URLs) were accurate at the time of writing. Neither the
author nor New York University Press is responsible for URLs that may have expired or
changed since the manuscript was prepared.
Library of Congress Cataloging-in-Publication Data
Names: Beard, Renée L., author.
Title: Living with Alzheimer’s : managing memory loss, identity,
and illness / Renée L. Beard.
Description: New York : New York University Press, [2016] |
Includes bibliographical references and index.
Identifiers: LCCN 2015043570| ISBN 9781479800117 (cl : alk. paper) |
ISBN 9781479889808 (pb : alk. paper)
Subjects: LCSH: Alzheimer’s disease. | Alzheimer’s disease—Patients—Care.
Classification: LCC RC523 .B396 2016 | DDC 616.8/31—dc23
LC record available at http://lccn.loc.gov/2015043570
New York University Press books are printed on acid-f ree paper, and their binding materials
are chosen for strength and durability. We strive to use environmentally responsible suppli-
ers and materials to the greatest extent possible in publishing our books.
Manufactured in the United States of America
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Also available as an ebook
This book is dedicated to
Margarita Wheeler, Jenny Knauss, Richard Taylor,
and all of those who are currently being denied
meaningful human interaction because of
inaccurate assumptions that such exchanges
cannot be of any benefit to people with memory loss.
This is also for anyone who has seen a glimpse
of what I saw in Margarita in someone else
and took the time to join them.
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Contents
Acknowledgments ix
Prologue: Lost in Translation 1
1. The Meaning of Memory Loss: Illness, Identity,
and Biography 5
2. History and Technoscience: From Senility to Alzheimer’s 21
3. Constructing Facts in Clinical Practice: Interpreting,
Diagnosing, and Treating Memory Loss 50
4. Being Cognitively Evaluated: Learning to Medicalize
Forgetfulness 85
5. Hearing “the A Word”: The Road to Becoming an
Alzheimer’s Patient 106
6. Everyday Life with Diagnosis: The New Normal 136
7. Advocating Alzheimer’s: Biomedical Structures and
Social Movements 168
8. Forget Me Not: The Future of Alzheimer’s 215
Appendix A: Interview Guides 235
Appendix B: Study Design and Methodology 239
Appendix C: Study Sites and Procedures 247
Notes 269
References 287
Index 319
About the Author 324
vii
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Acknowledgments
This long process has been made significantly easier by numerous peo-
ple, many of whom are unaware of their contributions. I owe the most
thanks to my confidant and best friend, Adam, who is decidedly aware
of his role in this book. Both his patience and ability to know how to
help me get this done often exceeded my own. His parents Ellen and
Jonathan, both academics themselves, no doubt socialized him well into
the role— and for that and much else I am thankful to them also. I am
especially grateful for my two sons, Ari and Asher, who made it impossi-
ble to retreat too far away emotionally or physically. There was no better
excuse to take a break than playing with you two.
I thank my parents, Robert and Ruth Beard, who unselfishly gave
me everything and told me that I could do anything; Grace Richardson
who— in life and in death— showed me the beauty of aging and gave me
the gift of what I now proudly think of as my “farming stock”; Jeanette
Wilder, who called me “blueberry eyes” and had faith in me when I my-
self did not; and Harley Richardson, who taught me about the labor of
love without even trying. I appreciate Robin and Richard Beard for giv-
ing me the richness of sibling life. I am indebted to Margarita Wheeler,
the first person I ever met with what at the time was called Oldtimers,
for sharing her world with me, encouraging me to join her where she
was, inciting the passion behind all these years of study, and for un-
apologetically knowing me only as “Goldilocks.” The motivation for this
book, when I look back now, started with Margarita; a strong, proud,
and witty woman who too few people in the nursing home where I had
my first job— as a housecleaner—t ook the time to get to know.
I am deeply indebted to the seniors who allowed me to enter into one
of the most private, vulnerable times in their lives and spoke honestly
and openly with me about their experiences. I feel grateful to have heard
their unique stories and for the honor of being present during an already
taxing experience. I also could not have done this without the willing-
ix