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Winner of the Society for Medical Anthropology's 2009 New Millennium Award
Imagine yourself in advanced age, forced to depend on others for all your basic needs. What would you want to retain of your personal life?
This question is at the heart of a set of case studies that examine the lives of nursing home residents who were diagnosed with senile dementia. Based on two years of intensive comparative ethnographic study in a nursing home in a Northeastern American city, The Person in Dementia dramatically contrasts the outcomes of two approaches to dementia care for elders with severely disturbed behaviors: a task-oriented approach based on a biomedical view of disease progression and a flexible person-sustaining approach focusing on individual needs and communication. By emphasizing "personhood," which looks beyond physical and reasoning abilities to a person's will and relationship with others, McLean conceptualizes dementia care as a moral enterprise. She encourages innovative and compassionate elder care and accountability across the spectrum from direct care-givers to nursing home owners to those at the highest levels of government.
McLean also offers a fine-tuned analysis of how relations among direct care-giving, professional, and administrative staff within a facility can dramatically affect the quality of dementia care. The book includes policy recommendations that are geared to long-term care administrators and policy-makers as well as to caregivers, families, and elders with dementia.
Athena McLean is Professor of Anthropology at Central Michigan University, Mount Pleasant, Michigan. She has written numerous articles on aging, dementia, and community mental health.
Foreword, Robert L. Rubinstein
Preface
Acknowledgements
Introduction
Part One: Theoretical and Methodological Considerations in Dementia Care
1. Organic Sources, Signs, and Course of Dementia
2. Perspectives on Dementia and the Person
3. Historical Background to Dementia Caregiving and the Ethnographic Research Methodology
4. The Research Setting and the Residents
Part Two: Ethnographic Case Studies and Analyses
5. Historical and Cultural Context of Caregiving in Snow 1: Three Case Studies
6. Historical and Cultural Context of Caregiving in Snow 2: Three Case Studies
7. Comparing Caregiving of Snow 1 with Snow 2
8. Conclusions and Recommendations for Future Dementia Caregiving
Part Three: Looking Ahead in Dementia Care
9. External Barriers to Quality Dementia Care
10. Conclusion: Toward a New Vision of Dementia Care
Appendix A: Linking Neuropathology to Specific Diseases
Appendix B: Dementia as a Demographic Problem: Social and Policy Implications
Appendix C: Contributions of Previous Ethnographic Studies to Nursing Home Research
Appendix D: This Ethnography as a Journey
Appendix E: Methodological Details
Works Cited and Recommended Reading
Index
One hundred years after the first case of Alzheimer's, the author of this revealing book is right to ask whether a century of the medical model of dementia has served society well. Students of many ilks will benefit from re-imagining Alzheimer's from the perspective of affected elders and their caregivers, and retelling their own stories of brain aging.
Peter Whitehouse, Case Western Reserve University
With its clear, logical, carefully crafted, and nuanced exposition of day-to-day interactions among older people experiencing dementia, their family members, their professional caregivers, and the politico-economic context of the nursing home, this magnificent ethnography takes the study of this kind of health institution to new heights. Its focus on behavioral disturbances as a communicative issue and its application of critical social theory is innovative and intensely provocative, sure to engage deeply a wide audience—undergraduates, graduates, faculty, researchers, and staff in the caring professions.
Judith Barker, University of California, San Francisco
McLean's work is remarkably accessible to health professionals and family members alike and unusually comprehensive in its coverage of history, biology, and policy. A close-up view of daily care practices and experiences in an Alzheimer's unit.
Barbara Bowers, School of Nursing, University of Wisconsin-Madison
This beautifully written book by McLean illuminates inadequacies in delivering quality care in nursing homes to persons with dementia. Drawing on rich ethnographic evidence, McLean breaks down the socially constructed concept of dementia as disease, and highlights the dangers one faces when becoming a patient.CHOICE
