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Thinking About Dementia

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

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    Thinking About Dementia
    Book Description:

    Bringing together essays by nineteen respected scholars, this volume approaches dementia from a variety of angles, exploring its historical, psychological, and philosophical implications. The authors employ a cross-cultural perspective that is based on ethnographic fieldwork and focuses on questions of age, mind, voice, self, loss, temporality, memory, and affect.

    Taken together, the essays make four important and interrelated contributions to our understanding of the mental status of the elderly. First, cross-cultural data show that the aging process, while biologically influenced, is also culturally constructed. Second, ethnographic reports raise questions about the diagnostic criteria used for defining the elderly as demented. Third, case studies show how a diagnosis affects a patient's treatment in both clinical and familial settings. Finally, the collection highlights the gap that separates current biological understandings of aging from its cultural meanings.

    As Alzheimer's disease and other forms of dementia continue to command an ever-increasing amount of attention in medicine and psychology, this book will be essential reading for anthropologists, social scientists, and health care professionals.

    eISBN: 978-0-8135-3927-0
    Subjects: Health Sciences, Anthropology

Table of Contents

  1. Introduction: Thinking about Dementia
    (pp. 1-20)

    Our aims in bringing together the scholars assembled in this volume were threefold. First, we wanted to link a variety of research strategies and disciplinary vantage points in the human and social sciences in order to better understand 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 meanthe perception of deleterious behavioral change in someone understood to be old, with attention to both the biology...

  2. PART ONE Changes in Clinical Practice

    • 1 Dementia-Near-Death and “Life Itself”
      (pp. 23-42)

      This chapter is about the cultural work that dementia does, the sociomedical uses to which it is put in the American hospital at the end of life. I suggest that dementia works there in three ways: as a rationale for facilitating death, as a contested feature of what matters about the patient’s identity, and as a moralclinical designation of value when a frail life is perceived to hang in the balance. In performing this multiplex work, dementia makes manifest one aspect of the ethics and politics of life itself in the negotiations it elicits about “quality of life,” “loss of...

    • 2 The Borderlands of Primary Care: Physician and Family Perspectives on “Troublesome” Behaviors of People with Dementia
      (pp. 43-63)

      Midway through our interview, Mrs. Jones, whose husband was diagnosed with Alzheimer’s disease two years earlier, began talking about a change in her husband that distressed her—his forgetfulness. My immediate association was to short-term memory loss, a core part of the professional criteria of dementia. She then told us a story about his inability to set the alarm in their house in response to her admonitions to do so. Again, her description appeared to conform to the clinical criteria for dementia, which include functional decline and difficulties with higher-order cognitive tasks that require planning and sequencing (executive functioning). At...

    • 3 Negotiating the Moral Status of Trouble: The Experiences of Forgetful Individuals Diagnosed with No Dementia
      (pp. 64-79)

      There is evidence to suggest that individuals who complain of memory problems but have no objective deficits constitute between 12 and 30 percent of the patient population that is seen in memory clinics (Almeida et al. 1993; Berrios, Marková, and Girala 2000). There are conflicting views about the clinical significance of such complaints. Berrios, Markovà, and Girala (2000) remark that because these patients do not fit into any accepted definition of memory disorder, attitudes toward “persistent memory complainers with negative neurological, neuropsychological and neuropsychiatric assessments tend to be harsher, particularly in memory clinics whose objective is to collect patients for...

    • 4 Diagnosing Dementia: Epidemiological and Clinical Data as Cultural Text
      (pp. 80-105)

      What meanings are hidden in the plaques and tangles of an atrophying brain, in the artifacts of diagnostic clinical history, in the bioinformatic matrices of an epidemiological database? Or in the lived experiences of a still-active mind trying to express a voice, to perform an action, but unable to find the means to do so? How do seemingly disparate bits and pieces of pathology, clinical history, social relationships, and specialist training come together? How do these fractured components form interpretable constellations that help us better understand the science; the sufferers; the relationships between dementia, data, and the diagnostic process?


    • 5 The Biomedical Deconstruction of Senility and the Persistent Stigmatization of Old Age in the United States
      (pp. 106-120)

      This oft-quoted characterization of the seventh and final stage of a person’s life has usually been taken as a commonplace of old age: this period has always been stigmatized. In particular, the mental losses associated with age, “second childishness and mere oblivion,” have been among the most deeply stigmatized conditions. In its frightening totality—effacing the memories and abilities that are widely seen as the very essence of personhood—senile dementia seems to taint the entire experience of aging. In its relentless inevitability, deeply associated with aging and the mere passage of time, it makes a mockery of the achievement...

  3. PART TWO The Role of Genomics in Alzheimerʹs Research

    • 6 Genetic Susceptibility and Alzheimerʹs Disease: The Penetrance and Uptake of Genetic Knowledge
      (pp. 123-154)

      Comments and claims, such as the preceding by Francis Collins, as well as reports about newly located genes, appear with increasing frequency in the media these days. The sociologist Alan Peterson argues that such stories are deemed newsworthy “precisely because they offer people the promise of being able to re-make themselves anew—to ‘play God’—so that they can better deal with, if not overcome, the reality of disease, disability and death” (2001, 267). Because of the possibility that such stories may bring about changes in individual behaviors, Peterson insists that it is important to investigate how “gene stories” selectively...

  4. PART THREE The Organization of Voice, Self, or Personhood

    • 7 Coherence without Facticity in Dementia: The Case of Mrs. Fine
      (pp. 157-179)

      The narrative turn in the study of aging has brought forth a variety of nonpositivist, nonrealist approaches to examining an elder’s life story within the terms of the story itself, independent of its truth content. Beginning with the early 1980s, anthropology witnessed a flood of studies concerning the life history approach (cf. Bertaux 1981; Crapananzo 1980; Shostak 1981). By 1988, however, the influence of illness in the construction of one’s life history received little attention (Kaufman 1988, 217). Since then, bolstered by interpretive approaches to narrative in anthropology (e.g., Rabinow and Sullivan 1987), as well as theory and methods from...

    • 8 Creative Storytelling and Self-Expression among People with Dementia
      (pp. 180-194)

      When memory fades and one’s grasp on the factual building blocks of one’s life loosens, what remains? Is a person still capable of growth and creative expression even when dementia strikes? To answer these questions, I relay the story of the TimeSlipsProject, a research and public-arts storytelling project aimed at nurturing creative expression among people with Alzheimer’s disease and related dementia (ADRD) and at sharing the stories that emerged in TimeSlipsworkshops with the public at large to increase awareness of the creative potential of people with ADRD. I will (1) outline the storytelling method and my study of...

    • 9 Embodied Selfhood: An Ethnographic Exploration of Alzheimerʹs Disease
      (pp. 195-217)

      Alzheimer’s disease is regarded as the most bewildering and frightening condition facing the aging population in the twenty-first century (Schroeder et al. 1990) and represents a much feared stigmatizing label that carries with it the force of a sentence of social death (Robertson 1991). As Herskovitz notes, senility is characterized as “monstrosity” by the lay media with “clichéd metaphors and representations in which Alzheimer’s is characteristically drawn in colourfully dramatic terms that paint vividly disturbing images” (1995, 152–153). Alzheimer’s is described as a living death, a never ending funeral, and a private hell of devastation.

      The source of the...

    • 10 Normality and Difference: Institutional Classification and the Constitution of Subjectivity in a Dutch Nursing Home
      (pp. 218-239)

      In an influential essay on dementia care, Kitwood (1993) uses the notion ofcultureto orient caregivers to the communicative aspects of care on psychogeriatric wards. By talking about a “culture of dementia” he provides a new perspective on the way in which dementia sufferers are usually represented, that is, in terms of a loss of voice and of the possibility of constituting a lifeworld (Leering 1967; Chatterji 1998). He tries to think of the ward in terms of an intersubjective space that can be shared by both caregivers and patients, that offers possibilities for the development of a lifeworld....

    • 11 Divided Gazes: Alzheimerʹs Disease, the Person within, and Death in Life
      (pp. 240-268)

      Scene 1: It was my first day of observation at a small psychogeriatric outpatient clinic, part of the Institute of Psychiatry at the Federal University of Rio de Janeiro (UFRJ).¹ This was one of my field sites for my study of the psychiatry of aging.² In came the first patient, a small, friendly woman of sixty-four. She sat down in front of the attending psychiatrist, Dr. Fisz, and told him in a coherent manner that lately she had been feeling constantly depressed.³ She explained that her family had once been large, but now the kids had left home and her...

    • 12 Being a Good Rōjin: Senility, Power, and Self-Actualization in Japan
      (pp. 269-288)

      During the summer of 2000, six women and three men gathered at about ten o’clock in the morning at the Furiai Puraza (Contact Plaza), a senior center located in the town of Yonegawa in northern Japan. The group assembled for the first day of a cooking class that would meet six times over the following three months. As the participants, all of whom were in their late sixties and early seventies, waited for the class to commence, the director of the center spoke briefly about his hopes that all the students would learn not only to cook, but also about...