The Person in Dementia

The Person in Dementia: A Study of Nursing Home Care in the US

Athena McLean
Copyright Date: 2007
Pages: 312
https://www.jstor.org/stable/10.3138/j.ctt2ttr3z
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  • Book Info
    The Person in Dementia
    Book Description:

    "Students of many ilks will benefit from re-imagining Alzheimer's from the perspective of affected elders and their caregivers." - Peter Whitehouse, Case Western Reserve University

    eISBN: 978-1-4426-0319-6
    Subjects: Sociology, Anthropology

Table of Contents

  1. Front Matter
    (pp. I-VI)
  2. Table of Contents
    (pp. VII-VIII)
  3. Foreword
    (pp. IX-X)
    Robert L. Rubinstein

    This book is a stellar achievement. It documents the social and cultural factors that create or extend behavioral disturbances by elders with Alzheimer’s disease and other dementias who reside in a nursing home. In addition, it is an ethnography of that nursing home. Further, it is the only book I know of that applies recent advances in social and critical theory to better understanding the nursing home as a constructed, power-based system.

    What is also exceptional about the book are its portraits of individuals, most of whom are demented, who live in the nursing home. These persons emerge clearly as...

  4. Preface
    (pp. XI-XII)
  5. Acknowledgements
    (pp. XIII-XIV)
  6. Introduction
    (pp. 1-12)

    In 1990, Janet Adkins, a 53-year-old woman, devastated by her diagnosis of early Alzheimer’s disease and the horrifying prospect of becoming a “nonperson,” decided to end her life (Au 2000: 215). She became Dr. Jack Kevorkian’s first case of assisted suicide (Potter 1999: 2).

    Called the “disease of the century,”¹ Alzheimer’s disease, the most common type of senile² dementia—a cognitive, functional, and behavioral disorder affecting millions, has likely become the most dreaded disease of old age. Estimates suggesting that close to one half of the population over 85 is affected by Alzheimer’s disease (AD) have convinced the public that...

  7. Part One: Theoretical and Methodological Considerations in Dementia Care

    • CHAPTER 1 Organic Sources, Signs, and Course of Dementia
      (pp. 15-26)

      Dementia is a cognitive and behavioral disorder that poses serious problems both for the affected person and her caregiver. Much has been written already about dementia as a personal problem for the family trying to provide care for the elder (e.g., Mace and Rabins 2001). This chapter examines symptoms and their possible organic sources and introduces the problem of behavioral disturbances (BDs) that affect both the elder with dementia and her caregiver.

      Senile dementia is characterized by progressive cognitive deterioration in persons 65 and older as the result of neuropathological changes in the brain. Only 3 per cent of cases...

    • CHAPTER 2 Perspectives on Dementia and the Person
      (pp. 27-56)

      This chapter discusses two contrasting perspectives on dementia—thebiomedicalperspective and thecommunicationsperspective—as these affect the way thepersonwith dementia and her behavioral disturbances (BDs) are viewed and treated. It then considers what it means to be a person with dementia. The first section focuses on thebiomedical modelthat has shaped the dominant understanding of dementia. It begins by reviewing the social processes by which senile dementia came to be constructed as a biomedical disorder. It then examines features of the biomedical model and their implications for dementia caregiving. Last it considers limitations in the...

    • CHAPTER 3 Historical Background to Dementia Caregiving and the Ethnographic Research Methodology
      (pp. 57-70)

      This chapter provides the background information for my research. It begins by tracing the evolution of dementia care in the United States up to the development of special care units like those I studied. It then discusses the research methodology for the study, including the value of the ethnographic method in nursing home research, the communications perspective and comparative framework for the study.

      As early as the colonial era, structures have been in place for housing frail elderly. Elizabethan Poor Laws brought from England, along with later American laws, demanded local responsibility through local taxes to care for the poor,...

    • CHAPTER 4 The Research Setting and the Residents
      (pp. 71-92)

      A setting consists of aphysicalspace that various actors occupy and in which they intermingle. It has physical components that are visible and less visible structural components that allow various sets of actors (in this case, e.g., the staff) to exercise power within it. There are alsoenvironmentalaspects to a setting that, quite prominently on the Snow units, are shaped by levels of activity and sound. Finally, there areexperientialaspects to being embedded in a setting that can best be depicted by those whose lives it most fully penetrates.

      The study took place on Snow 1 and...

  8. Part Two: Ethnographic Case Studies and Analyses

    • CHAPTER 5 Historical and Cultural Context of Caregiving in Snow 1: Three Case Studies
      (pp. 95-132)

      Snow 1 was a unit in flux. Because of the various changes in the unit and residents over its 19-year history, by the time of my study there was some disagreement about its intent. “It’s the psych unit of the nursing home,” offered one staff member. “It’s only for advanced Alzheimer’s patients,” offered another. “It is the place for persons with severely disturbed behaviors, usually but not always with dementia,” the head nurse accurately (according to formal admissions criteria) explained. Family members were more grim in their assessments. “It’s the last chance cafe—where you go when no other unit...

    • CHAPTER 6 Historical and Cultural Context of Caregiving in Snow 2: Three Case Studies
      (pp. 133-174)

      With as much turnover as Snow 1 had sustained over the years, Snow 2 was remarkable for its stability. Several residents, the charge nurse and three NAs had been with the unit since it opened 19 years earlier, and another NA arrived soon after. The other residents had lived there from two to four years. Family members were welcome there and generally felt confident about the care their relative was receiving. Administrative staff regarded Snow 2 as the “most stable” unit in the nursing home, and at the start of my study the DON called it her favorite.

      On all...

    • CHAPTER 7 Comparing Caregiving of Snow 1 with Snow 2
      (pp. 175-196)

      The case studies from the previous two chapters provide examples of two contrasting approaches to dementia “care” giving, with extremely different outcomes for the recipients. Theseinternal unit-level differencesin caregiving were not part of a deliberate research design, but developed naturally over time under the direction of the head nurse on each unit, and provide important clues about nonmedical factors that can profoundly affect outcome.

      The Snow units differed in the ways that their staff interpreted BDs and the strategies they adopted for dealing with them. They also had different care priorities for caregiving, ways of organizing their staff...

    • CHAPTER 8 Conclusions and Recommendations for Future Dementia Caregiving
      (pp. 197-218)

      Giving care to another person is fundamentally different from giving or delivering an object to someone. This is because caregiving involves arelational transactionbetween the caregiver and the care receiver that inevitably affects thenatureof the care or service being rendered. When this relational dimension is missing, there can be no genuinecare transaction, only action directed at accomplishing someinstrumental goal. In such cases, the very absence of a relational dimension affects both the “care” giving and care receiving experience. This is particularly true with dementia, where the elder requires ongoing acknowledgment and support from the caregiver...

  9. Part Three: Looking Ahead in Dementia Care

    • CHAPTER 9 External Barriers to Quality Dementia Care
      (pp. 221-238)

      Chapters 5 through 8 examinedinternalcaregiving practices of two special care units as they affected the lives of persons with dementia. The evidence from the cases studies clearly pointed to the superiority of relational person-preserving care over disengaged task-centered approaches for sustaining persons with dementia.

      Person-preserving dementia care, however, is bothlaborintensive andsubjectintensive. Elaine, a master of such care, showed that it is necessarily more time intensive than instrumental care. Person-preserving care involves much more than caring for bodies; it requires caring for what bioethicist Paul Ramsey called “embodied souls.” Not only do person-preserving caregivers address...

    • CHAPTER 10 Conclusion: Toward a New Vision of Dementia Care
      (pp. 239-258)

      A policy researcher recently observed that acute care deals with devastating disease through potentially lethal but “miraculous” cures, while long-term care, though never life-threatening, is unable to deliver dramatic solutions.¹ This study challenges that conclusion. It has shown how instrumental task-centered care that ignores the person can lead to tragic decline that is indeed life threatening. In addition, while relational person preserving caregiving and correcting of disabilities may not produce “miracle” cures, they visibly enhance quality of life and can dramatically improve functioning. Without concerted efforts to improve nursing home caregiving practices, elders with dementia will continue to face unnecessary...

  10. APPENDIX A: LINKING NEUROPATHOLOGY TO SPECIFIC DISEASES
    (pp. 259-260)
  11. APPENDIX B: DEMENTIA AS A DEMOGRAPHIC PROBLEM: SOCIAL AND POLICY IMPLICATIONS
    (pp. 261-263)
  12. APPENDIX C: CONTRIBUTIONS OF PREVIOUS ETHNOGRAPHIC STUDIES TO NURSING HOME RESEARCH
    (pp. 264-266)
  13. APPENDIX D: THIS ETHNOGRAPHY AS A JOURNEY
    (pp. 267-273)
  14. APPENDIX E: METHODOLOGICAL DETAILS
    (pp. 274-278)
  15. Works Cited and Recommended Reading
    (pp. 279-298)
  16. Index
    (pp. 299-314)