Forgetting Items

Baptiste Brossard

Description

Alzheimer's disease has not only profound medical consequences for the individual experiencing it but a life-changing impact on those around them. From the moment a person is suspected to be suffering from Alzheimer's or another form of dementia, the interactions they encounter progressively change. Forgetting Items focuses on that social experience of Alzheimer's, delineating the ways disease symptoms manifest and are understood through the interactions between patients and the people around them. Mapping out those interactions takes readers through the offices of geriatricians, into patients' narratives and interviews with caregivers, down the corridors of nursing homes, and into the discourses shaping public policies and media coverage. Revealing the everyday experience of Alzheimer's helps us better understand the depth of its impact and points us toward more knowledgeable, holistic ways to help treat the disease.

Acknowledgments

Introduction

Chapter One: The Organization of Repairing Exchanges

Chapter Two: Losing Credibility

Chapter Three: The Deference Industry

Chapter Four: Reconstituting People

Conclusion

Notes

Sujets

• Alzheimer's disease
• Memory loss
• Elderly care
• Health care
• Physical exercise
• Dementia
• Disease

Informations

• Publié par: Indiana University Press
• Date de parution: 31 juillet 2019
• Nombre de lectures: 0
• EAN13: 9780253045003
• Langue: English

Extrait

FORGETTING ITEMS
FORGETTING ITEMS
The Social Experience of Alzheimer s Disease
Baptiste Brossard
INDIANA UNIVERSITY PRESS
This book is a publication of
Indiana University Press
Office of Scholarly Publishing
Herman B Wells Library 350
1320 East 10th Street
Bloomington, Indiana 47405 USA
iupress.indiana.edu
Alma Editeur, Paris. 2017
English translation 2019 Indiana University Press
All rights reserved
No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying and recording, or by any information storage and retrieval system, without permission in writing from the publisher. The paper used in this publication meets the minimum requirements of the American National Standard for Information Sciences-Permanence of Paper for Printed Library Materials, ANSI Z39.48-1992.
Manufactured in the United States of America
Library of Congress Cataloging-in-Publication Data

Names: Brossard, Baptiste, 1985- author.
Title: Forgetting items : the social experience of Alzheimer s disease / Baptiste Brossard.
Other titles: Oublier des choses. English
Description: Bloomington, Indiana : Indiana University Press, 2019. | Translation of Oublier des choses : ce que vivent les malades d Alzheimer / Baptiste Brossard. 2017. | Includes bibliographical references and index.
Identifiers: LCCN 2019017258 (print) | LCCN 2019018527 (ebook) | ISBN 9780253044990 (ebook) | ISBN 9780253044969 (hardback : alk. paper) | ISBN 9780253044983 (pbk. : alk. paper)
Subjects: | MESH: Alzheimer Disease-psychology | Interpersonal Relations | Caregivers
Classification: LCC RC523 (ebook) | LCC RC523 (print) | NLM WT 161 | DDC 616.8/311-dc23
LC record available at https://lccn.loc.gov/2019017258
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CONTENTS
Acknowledgments
Introduction

1 The Organization of Repairing Exchanges
2 Losing Credibility
3 The Deference Industry
4 Reconstituting People
Conclusion

Notes
Index
ACKNOWLEDGMENTS
S OME FIELDWORK STUDIES ON WHICH THIS BOOK RELIES have been realized with the collaboration of Sol ne Billaud, Normand Carpentier, and Pamela Skaff. This work has been supported by two funding sources: la Fondation Plan Alzheimer (France, 2012-2014) and le partenariat ARIMA (Qu bec, 2014-2016). The translation is by Baptiste Brossard and Rohan Todd.
The author wishes to thank, in particular, all the participants who accepted to meet with him and give him time either at difficult moment of their lives or when time was a rare commodity.
INTRODUCTION
C ARS ARE RUSHING IN ALL DIRECTIONS; PEDESTRIANS AND cyclists are trying to thread their way through the m l e of cars; policemen stand at the main crossroads to regulate the traffic with varying success. But this external control is founded on the assumption that every individual is himself regulating his behavior with the utmost exactitude in accordance with the necessities of this network. The chief danger that people here represent for others results from someone in this bustle losing his self-control. 1
In his book State Formation and Civilization , the sociologist Norbert Elias uses urban circulation as an illustration of the strict control that individuals must impose on themselves in contemporary societies in order not to disturb the public order. Everyone contributes to the organization of social life-chaotic in appearance yet ordered in reality-by remaining focused, self-controlled, and aware of the multiple rules that govern us. We comport ourselves in line with some norms and configure our emotions in the image of those supposedly deemed appropriate. The ability to self-control is a fundamental feature of contemporary social life, the exercising of which remains inseparable from deep cultural expectations shaped by economic imperatives, themselves grounded in presumptions about individual autonomy. The extent to which such autonomy is celebrated in our societies is evident in the way that we often regard the imposition of such constraints as fruits of our own individuality, as if controlling ourselves is simply a raw manifestation of our free will.
It is only when one of the elements of this imperative to self-control seems to falter-that is, when one no longer adheres to dominant norms and accepted emotional configurations-that one can observe the extent to which this order, seemingly natural at first sight, is in fact socially maintained.
This is the case with people diagnosed with Alzheimer s disease or other forms of dementia-I will employ these two expressions as equivalent to facilitate the development of this book. Patients suffering from dementia/Alzheimer s undermine the foundations of public order, grounded as it is on the individual s ability to act as an autonomous and conditioned agent. Around those affected by dementia, a set of interactions and devices begins to emerge that frames the sufferer s trouble and prevents them from too much damage to bodies and interactions.
Therefore, the study I propose is less a study of a health condition than an exploration of the general interaction order through one of its possible systematic alterations: dementia. How do these interactions occur? What do they produce? What does this production tell us about our social world?
Beyond the Medical Discourse
According to the World Alzheimer s Association, in 2016 there were 47.5 million people diagnosed with Alzheimer s disease. The scale of this disease is arguably one of the most serious public health problems of our time.
In the West, the origins of Alzheimer s and other illnesses that impair the normal functioning of memory and thinking are attributed to some dysfunction of the brain. Such dysfunction is often characterized by amyloid plaques that form in most patients or else to some dysfunction of the body more generally, since certain lifestyles would favor the onset of the disease. Given that Alzheimer s disease is conventionally understood in these ways, the dominant field of expertise is medical. 2 This means that doctors figure as the most legitimate actors to discuss the behaviors and interactions associated with dementia.
Furthermore, this is why many books (especially outside the social sciences) that deal with dementia are based on the medical representation of health problems. This medical representation entails a clinical depiction of the symptoms and their progression through stages, which is associated with the possible causes of the illness and some indications regarding what needs to be done in terms of treatment. These indications often accompany some rather vague ethical recommendations, such as invitations to behave with humanity, decency, or respect and to support the dignity of the patients. This discourse generates such a consensus that one may wonder what a sociologist could possibly add.
What if we were to apprehend Alzheimer s disease through the interactions that make it on a regular basis? What if we focus on the ways of acting, behaving, and framing the symptoms, all the elements that construct the disease in its daily reality, both for patients and people around them? What if we focus on the social experience of dementia ?
Methodology: Investigating an Interaction Network
[The geriatrist looks at the sheets on his desk and takes a serious tone].
Well, in terms of . . . of all that we ve seen . . . the tests, the MRI . . . I would say . . . that it s most likely Alzheimer s. It s clear that there are some obvious memory problems. So, I ll give you a prescription and we ll see you in six months.
Silence in the room.

I started this work in October 2011, in Paris, attending seventy consultations devoted to the diagnosis of dementia. Initially wanting to study medical diagnostic techniques, I understood that Alzheimer s disease is also a relational mechanism. A mechanism in which patients play, and often lose, their credibility toward health professionals and their relatives, who no longer believe what they say. During interviews conducted with some patients, I was struck by the relational reconfigurations taking place around them in a situation of indefinite waiting: We ll see, a lady repeated nervously, we ll see. In the five following years, I conducted various fieldwork studies in order to explore what dementia implies in various places and for different people. 3
Between summer 2012 and summer 2013, I studied how the medical profession builds and adopts diagnostic tools. In particular, I focused on the mini-mental state examination, a neuropsychological test used throughout the world. Moreover, together with my colleague Sol ne Billaud, I embarked on an in-depth study of Mr. Lautrec s diary. Mr. Lautrec is an octogenarian suspected by his relatives to be suffering from cognitive disorders and placed against his will in a nursing home. His family suspects him of being paranoid because he reports everything that happens to him in his notebook. Mr. Lautrec s family consider that such a practice is symptomatic of cognitive disorder. It seemed, however, in a context where Mr. Lautrec was receiving an array of medical services, in part against his will, writing had become a vital organizational activity. That is, we recognized that symptoms cannot be isolated from the situation in which the persons are, from their social, historical context. 4
In the fall of 2013, I decided to study nursing homes more specifically because many people diagnosed with dementia end up in nursing homes or aged-care facilities. I was intrigued as to what changes such institutionalization implies. For six months, I spent two or three days a week observing the collective life of resid