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Thinking About Dementia Culture Loss and the
Anthropology of Senility 1st Edition Annette Leibing
Digital Instant Download
Author(s): Annette Leibing, Lawrence Cohen
ISBN(s): 9780813538020, 0813538025
Edition: 1
File Details: PDF, 1.18 MB
Year: 2006
Language: english
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, N EW 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 M C LEAN

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

We 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
UUUUUUUUUUU

Introduction
Thinking about Dementia

LAWRENCE COHEN

Senility and Its Future

Our aims in bringing together the scholars assembled in this volume were
threefold. First, we wanted to link a variety of research strategies and disciplin-
ary vantage points in the human and social sciences in order to better under-
stand the remaking—biological and clinical, economic and political, public and
phenomenological—of the senile dementias today. Beyond the specificity of
Alzheimer’s disease or vascular dementia, many of us have been involved in
research on what I have long termed senility. By senility, I mean the perception of
deleterious behavioral change in someone understood to be old, with attention to both
the biology and the institutional milieu in which such change is marked, measured,
researched, and treated (Cohen ). For us, as social scientists and humanists of
medicine, to organize our conversations around senility in this sense of the
word, as opposed to organizing them around dementia, is simply not to pre-
sume in advance how perception, biology, and milieu are related. This reluc-
tance to presume, as opposed to any shibboleth of naive social construction, is
what makes us careful about terms and what makes our conversation anthropo-
logical. But far-ranging and systematic conversations among scholars of senility
are few.
Second, we presume that the future of senility, and clinically of the demen-
tias, is an open one. Much is changing: state- and corporate-funded pharmaceu-
tical, genomic, and epidemiological initiatives; instruments and regimes of
health-care funding and insurance; structures and strategies of treatment and
of care and their associated forms of reason; modes of therapeutic and non-
therapeutic practice challenging the limits to such reason; differences and in-
equalities across axes of difference we attempt to capture by terms such as class,

1
2 LAWRENCE COHEN

gender, race, and nation; and the larger frames of the structure of economies and
institutions, generations and ethics, and bodies and persons. The perspective of
the editors is not to presume that we understand what senility has been and
must be—in the home, laboratory, clinic, chronic-care facility, regulatory office,
or boardroom—and thus to offer an expert critique. It is rather to put our inter-
pretive and critical tools to work to understand what senility might be becom-
ing. In the case of the assembled chapters, our focus is on the dominant modern
clinical form by which senility has been articulated—dementia—and what is
happening to it.
Finally, we presume that thinking about dementia is not only a salutary but
also a necessary practice to address broader questions: of language, selfhood,
and sovereignty; of the structure of care both in general and in the clinic; and of
the practices and forms of reason and of life. That is, we hope to begin to reani-
mate the relation of senility to creative understanding in the human sciences
more broadly, to move beyond the solicitous and welfare-driven categories of
contemporary gerontology.
We do not wish to claim that these chapters, or this introduction, singly or
collectively accomplish all these objectives: such a claim would not do justice to
the specific and contingent projects of the authors. But we do hope and expect
that bringing these projects together will begin to suggest the contours of a field
in the three ways we have outlined. Nor do we claim that we have been able to
invite all or even most of the growing number of scholars thinking creatively
about senility and dementia to participate in this volume. Our expectation is
simply to frame a broader and more inclusive conversation.
Both editors have in earlier or ongoing work focused on what the dementia
clinic looks like beyond Western Europe and North America and share as well a
sense of critical distinctions in the making and management of dementia
within the so-called West. We have asked for contributions from authors who
have been trained or are working or doing research in and across a variety of
national sites (Brazil, Canada, Germany, India, Japan, the Netherlands, and the
United States). The tools and theoretical commitments of these authors differ
from one another and from those of the editors, and we have encouraged these
contradictions in service of a robust conversation.
The chapters in Thinking about Dementia are organized around a discrete set
of problems, specific sites of the creative application of technical reason: () the
emergence of new or reorganized forms of clinical practice in dementia given
shifts in the dynamic of forces constituting clinical reality; () the role of
genomics in Alzheimer’s research and clinical practice, its reconstitution as a
media object, and the popular reception and use of such media-driven under-
standings; () the organization of voice, self, or personhood in individuals with
dementia across therapeutic and experimental milieus as well as the set of
forces and forms that constitute both clinical and scholarly attention to “the
INTRODUCTION 3

person” with dementia; and () the relation between dependency and discipline in
the constitution of senility as what Steven Collier and Andrew Lakoff ()
have termed a regime of life. Before we turn to a preliminary engagement with
each of these sets of problems, we offer some general reflections.

Senility as a Site for Thought

What do we mean by, as stated earlier, reanimating the relation of senility to cre-
ative understanding in the human sciences? Simply that the study of senility can and
must set out to do more than improve the care and treatment of demented
persons: it must use senility to understand the critical stakes in persistent and
emergent forms of reason, memory, care, aging, medicine, and life itself. And
inversely, we are suggesting that scholars with general commitments to these
broad themes would do well to consider senility carefully. We are not dismissing
the necessity or value of applied research: most of the authors of the essays
collected here make direct or indirect claims upon the everyday structure and
management of dementia as an area of pragmatic concern. But at their best they
do so by troubling any division between “applied” work and social theory. At
stake for the editors is the future of medical anthropology and its allied fields:
we are as troubled by a persistent anti-intellectualism masquerading as public
or applied research as we are by scholarship that presumes that academic excel-
lence is inversely related to practical relevance.
We want to suggest that senility has had—at various moments and in
reference to various kinds of human problems (Rabinow )—this broader rel-
evance for critical thought and application, though by the late twentieth and early
twenty-first centuries it for the most part has been reduced to a medical problem.
Such an assertion is banal to the extent that it exemplifies a kind of
speaker’s benefit: gerontological discourse has arguably long justified itself by
claiming some sort of cataclysmic lack or fallen state it will redress (Cohen ,
). That senility has been “reduced” to a medical problem—in other words,
rendered coherent only as dementia or in particular as Alzheimer’s disease—is
not necessarily a bad thing. Several of the authors in this volume attend with
extraordinary care to the future of dementia in itself. Others speak to what we
might call the “personhood turn”—to the movement, within and among clini-
cal, lay, and academic spaces, to rediscover the person “lost” within the logic of
dementia diagnosis and care. And a few engage the conditions under which
attention to dementia and to what may be lost in its wake can be conjoined.
Rather, then, than offering a generalized lapsarian account of the impover-
ishment of senility as an existential figure, we will attempt a partial and undeni-
ably potted genealogy of earlier forms and forums of reason organized in critical
relation to senility. These fragments are offered as provisional materials for un-
derstanding the present.
4 LAWRENCE COHEN

Senility as a Matter of Voice

Of the three great figures of mental anguish that might be said to haunt Euro-
pean thought before the nineteenth century—melancholy, lunacy, and dotage
or senility—the first two become central to the reflexive accounting of moder-
nity, whether refigured as alienation and anomie or violence, disorder, and pos-
session. Senility, despite an earlier centrality to figurations of emergent reason
in its articulation as dotage or folly (think, for example, of the significance of
Shakespeare’s Lear at the boundaries of sovereignty and nature), comes to be
less central to thinking modernity, with the exception perhaps of the imperial
representation of colonized subjectivity as age-discordant to civilized norms,
simultaneously too juvenile and too senile: the African or oriental despot as
both infantile and doddering (Haggard , ; Nandy ). Senility as the
state of ancient civilizations gone to seed, within such fields of colonial repre-
sentation, becomes a figure disjunctive from the self-understanding of Euro-
pean modernity.
It might have been otherwise. King Lear is not an incidental reference: the
suffering old person and the quality of his or her speech is a frequent figure
within the contest for reason in the Renaissance. When physicians begin to
make claims of authority over this speech, they do so in relation to a prolifera-
tion of women’s voices that are out of place (MacFarlane ). The problem of
the old voice is feminized as the witch’s curse. For the ideologies of the mem-
bers of the Inquisition and other prosecutors of witches, the dangerous claims
of older women’s speech suggest devilry. The physicians Reginald Scot and
Johannes Weyer—in their contest with the Inquisition for authority—hear the
voices of accused witches not as devilry but as a natural process of dotage. The
witches are but “doting old women.” Previously a general figure of memento
mori in earlier medical literature, dotage in Weyer () and in Scot () be-
comes something more than a sign of the ephemeral condition of worldly life.
For the physician, dotage is the epitome of unreason as a natural state, the
epitome of Nature itself. Few of these persons would have been demented: the
dotage of interest to the physician was both more capacious (older indigent
persons in general) and narrower (primarily women) than much later articula-
tions of senility.
Scot and Weyer’s interest was primarily juridical: they were engaged in ap-
peals to the prince in contestation with the church over the question of punish-
ment for accused witches. Dotage materializes the stakes in Reformation
struggle. There has been no Great Confinement (Foucault ): doting women,
or men, do not form populations presenting problems of governance. When
medicine in Europe will again make claims over senile bodies, much later, in
the mid-nineteenth century, it will be to articulate the relation between con-
finement and norms. Although everything has changed, we again confront a
proliferation of senile voices, and these are again feminized. The hospital marks
INTRODUCTION 5

the age and quality of its population: it registers the shift from young women’s
hysteria to old women’s senile dementia. In the Salpêtrière hospital in Paris,
what is at stake is less Nature in itself than its normalization under physiology
as an emergent science of life. Jean-Martin Charcot is interested in aging as a
process that stands at the border of the normal and the pathological and that
delineates the limits to each. In his Leçons cliniques sur les maladies des vieillards,
Charcot examines the life of the old women of the Salpêtrière as material for the
establishment of norms. The old body is critical to the stabilization of life itself
as the object of the new biomedicine. But the old voice, central to Scot and
Weyer’s earlier practice of listening against church accusation, fails to awake
the imagination here. Charcot’s () theater of clinical pathology comes to
focus on a different age, that of the young woman, the voice of the hysteric. Later
fin de siècle and modernist accounts of pathological modernity remain deeply
invested in hysterical rather than senile form. Over the course of the twentieth
century, both hysteria and senility become marked as disorders of memory. But
senility fails, with a few exceptions, to anchor an inquiry in the relation of lan-
guage, memory, and the self. For Charcot and his successors, senility stands as a
problem of life but not of the subject: it no longer speaks.

Senility and Geriatric Lament


Charcot’s early-twentieth-century heir, I. L. Nascher, the coiner of the term geri-
atrics, as a distinct form of knowledge and practice, recognizes old age in general
and mental debility in old age in particular as marginal sites within a reformu-
lated clinic. The relevance of the aging body to the systematization of normal
life has declined since the time of Charcot’s clinic. Nascher revives the nine-
teenth-century focus on old age as a problem of the limit, but unlike Charcot, he
frames old age’s status as limiting case as an ethical problem for medicine.
Nascher tells of his turn to the medicine of the aged: he was a medical student in
New York, in an institution for the indigent, wondering why his preceptor
seemed to be ignoring the repeated demands for attention of an old woman.
When his preceptor notes her problem is nothing but old age, Nascher has his
epiphany. Because we do not know how to distinguish the normal and the
pathological in old age, we cannot listen. We do not know how to hear. The old
voice returns as something that cannot be heard. This marginality demands an
ethical response; thus, geriatrics, an inquiry into the norms of aging (Nascher
; Thewlis ). The new field is organized as a lament against silence, and it
responds by analyzing the senescent voice into its discrete normal and patho-
logical components. Senility, to be heard within the clinic, is split into the exis-
tential condition of “normal aging” and the purified (Latour ) pathology of
dementia.
The project is progressive: the normal elder, split off from his or her
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- Note: Important consideration
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[Figure 4: Diagram/Chart/Graph]
Learning Objective 5: Problem-solving strategies and techniques
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- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
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Important: Experimental procedures and results
• Statistical analysis and interpretation
- Sub-point: Additional details and explanations
- Example: Practical application scenario
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- Example: Practical application scenario
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Important: Fundamental concepts and principles
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- Example: Practical application scenario
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Formula: [Mathematical expression or equation]
Definition: Ethical considerations and implications
• Problem-solving strategies and techniques
- Sub-point: Additional details and explanations
- Example: Practical application scenario
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Remember: Interdisciplinary approaches
• Case studies and real-world applications
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- Example: Practical application scenario
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[Figure 27: Diagram/Chart/Graph]
Example 27: Assessment criteria and rubrics
• Current trends and future directions
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[Figure 28: Diagram/Chart/Graph]
Remember: Research findings and conclusions
• Practical applications and examples
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Formula: [Mathematical expression or equation]
Remember: Problem-solving strategies and techniques
• Research findings and conclusions
- Sub-point: Additional details and explanations
- Example: Practical application scenario
Formula: [Mathematical expression or equation]
Background 4: Statistical analysis and interpretation
Example 30: Assessment criteria and rubrics
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- Sub-point: Additional details and explanations
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Formula: [Mathematical expression or equation]
Definition: Critical analysis and evaluation
• Historical development and evolution
- Sub-point: Additional details and explanations
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Remember: Comparative analysis and synthesis
• Current trends and future directions
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Formula: [Mathematical expression or equation]
[Figure 34: Diagram/Chart/Graph]
Key Concept: Comparative analysis and synthesis
• Current trends and future directions
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Formula: [Mathematical expression or equation]
Note: Practical applications and examples
• Theoretical framework and methodology
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Note: Theoretical framework and methodology
• Problem-solving strategies and techniques
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Important: Assessment criteria and rubrics
• Case studies and real-world applications
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Key Concept: Study tips and learning strategies
• Problem-solving strategies and techniques
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
[Figure 39: Diagram/Chart/Graph]
Important: Practical applications and examples
• Problem-solving strategies and techniques
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Formula: [Mathematical expression or equation]
Discussion 5: Assessment criteria and rubrics
Key Concept: Statistical analysis and interpretation
• Study tips and learning strategies
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Practice Problem 41: Experimental procedures and results
• Practical applications and examples
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
[Figure 42: Diagram/Chart/Graph]
Definition: Problem-solving strategies and techniques
• Historical development and evolution
- Sub-point: Additional details and explanations
- Example: Practical application scenario
Formula: [Mathematical expression or equation]
Remember: Ethical considerations and implications
• Best practices and recommendations
- Sub-point: Additional details and explanations
- Example: Practical application scenario
Formula: [Mathematical expression or equation]
Remember: Best practices and recommendations
• Literature review and discussion
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Remember: Problem-solving strategies and techniques
• Assessment criteria and rubrics
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Note: Best practices and recommendations
• Interdisciplinary approaches
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Example 47: Critical analysis and evaluation
• Key terms and definitions
- Sub-point: Additional details and explanations
- Example: Practical application scenario
Definition: Historical development and evolution
• Learning outcomes and objectives
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Note: Critical analysis and evaluation
• Fundamental concepts and principles
- Sub-point: Additional details and explanations
- Example: Practical application scenario
Formula: [Mathematical expression or equation]
Topic 6: Interdisciplinary approaches
Example 50: Current trends and future directions
• Fundamental concepts and principles
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Formula: [Mathematical expression or equation]
Example 51: Practical applications and examples
• Assessment criteria and rubrics
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Formula: [Mathematical expression or equation]
[Figure 52: Diagram/Chart/Graph]
Definition: Learning outcomes and objectives
• Critical analysis and evaluation
- Sub-point: Additional details and explanations
- Example: Practical application scenario
[Figure 53: Diagram/Chart/Graph]
Practice Problem 53: Current trends and future directions
• Statistical analysis and interpretation
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Formula: [Mathematical expression or equation]
Practice Problem 54: Problem-solving strategies and techniques
• Assessment criteria and rubrics
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Formula: [Mathematical expression or equation]
Important: Comparative analysis and synthesis
• Current trends and future directions
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
[Figure 56: Diagram/Chart/Graph]
Definition: Study tips and learning strategies
• Fundamental concepts and principles
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
Important: Comparative analysis and synthesis
• Theoretical framework and methodology
- Sub-point: Additional details and explanations
- Example: Practical application scenario
- Note: Important consideration
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