Thinking About Dementia: Culture, Loss, and the Anthropology of Senility

311 Pages·2006·1.18 MB·English

by  Annette Leibing

Thinking About Dementia
Studies in Medical Anthropology
Edited by Alan Harwood
Advisory Board
William Dressler
Mary Jo Good
Peter Guarnaccia
Sharon Kaufman
Shirley Lindenbaum
Lynn Morgan
Catherine Panter-Brick
Stacy Leigh Pigg
Lorna Rhodes
UUUUUUUUUUU
Thinking About Dementia
Culture, Loss, and the
Anthropology of Senility
EDITED BY
ANNETTE LEIBING
LAWRENCE COHEN
UUUUUUUUUUU
RUTGERS UNIVERSITY PRESS
NEW BRUNSWICK, NEW JERSEY, AND LONDON
Library of Congress Cataloging-in-Publication Data
Thinking about dementia : culture, loss, and the anthropology of senility / edited by Annette Leibing
and Lawrence Cohen.
p. cm. — (Rutgers series in medical anthropology)
Includes bibliographical references and index.
ISBN-13: 978-0-8135-3802-0 (hardcover : alk. paper)
ISBN-13: 978-0-8135-3803-7 (pbk. : alk. paper)
1. Medical anthropology. 2. Dementia. 3. Alzheimer’s disease. 4. Public health—Anthropological
aspects. I. Leibing, Annette. II. Cohen, Lawrence, 1961—III. Series.
GN296.T45 2006
306.4’61—dc22
2005019852
A British Cataloging-in-Publication record for this book is available from the British Library
This collection copyright © 2006 by Rutgers, The State University of New Jersey
Individual chapters copyright © 2006 in the names of their authors
All rights reserved
No part of this book may be reproduced or utilized in any form or by any means, electronic or
mechanical, or by any information storage and retrieval system, without written permission from the
publisher. Please contact Rutgers University Press, 100 Joyce Kilmer Avenue, Piscataway, NJ 08854–
8099. The only exception to this prohibition is “fair use” as defined by U.S. copyright law.
CONTENTS
Acknowledgments vii
Introduction: Thinking about Dementia 1
LAWRENCE COHEN
PART ONE
Changes in Clinical Practice
1 Dementia-Near-Death and “Life Itself” 23
SHARON R. KAUFMAN
2 The Borderlands of Primary Care: Physician and Family
Perspectives on “Troublesome” Behaviors of People
with Dementia 43
LADSON HINTON, YVETTE FLORES, CAROL FRANZ,
ISABEL HERNANDEZ, AND LINDA S. MITTENESS
3 Negotiating the Moral Status of Trouble: The Experiences
of Forgetful Individuals Diagnosed with No Dementia 64
ANDRÉ P. SMITH
4 Diagnosing Dementia: Epidemiological and Clinical
Data as Cultural Text 80
JANICE E. GRAHAM
5 The Biomedical Deconstruction of Senility and the
Persistent Stigmatization of Old Age in the United States 106
JESSE F. BALLENGER
v
vi CONTENTS
PART TWO
The Role of Genomics in Alzheimer’s Research
6 Genetic Susceptibility and Alzheimer’s Disease:
The Penetrance and Uptake of Genetic Knowledge 123
MARGARET LOCK, STEPHANIE LLOYD, AND JANALYN PREST
PART THREE
The Organization of Voice, Self, or Personhood
7 Coherence without Facticity in Dementia:
The Case of Mrs. Fine 157
ATHENA HELEN MCLEAN
8 Creative Storytelling and Self-Expression among
People with Dementia 180
ANNE DAVIS BASTING
9 Embodied Selfhood: An Ethnographic Exploration
of Alzheimer’s Disease 195
PIA C. KONTOS
10 Normality and Difference: Institutional Classification and
the Constitution of Subjectivity in a Dutch Nursing Home 218
ROMA CHATTERJI
11 Divided Gazes: Alzheimer’s Disease, the Person within,
and Death in Life 240
ANNETTE LEIBING
12 Being a Good Ro–jin: Senility, Power, and Self-Actualization
in Japan 269
JOHN W. TRAPHAGAN
Contributors 289
Index 291
ACKNOWLEDGMENTS
W
e are very grateful to Alan Harwood for kindly guiding us through the long
voyage of producing this book. We would also like to thank Kristi Long, senior
editor at Rutgers University Press, and the two anonymous readers of the manu-
script. Liselotte Hermes da Fonseca inspired the editors with her original and
profound ideas about memory.
This book is dedicated to Helen and David Cohen, Christian Dagenais, and
Daniel Leibing Sarney.
vii

Thinking About Dementia