The Person in Dementia: A Study of Nursing Home Care in the US / Edition 1

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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.

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Editorial Reviews

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.
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Meet the Author

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.

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Table of Contents

Foreword Robert L. Rubinstein ix

Preface xi

Acknowledgements xiii

Introduction 1

Part 1 Theoretical and Methodological Considerations in Dementia Care

Chapter 1 Organic Sources, Signs, and Course of Dementia 15

Chapter 2 Perspectives on Dementia and the Person 27

Chapter 3 Historical Background to Dementia Caregiving and the Ethnographic Research Methodology 57

Chapter 4 The Research Setting and the Residents 71

Part 2 Ethnographic Case Studies and Analyses

Chapter 5 Historical and Cultural Context of Caregiving in Snow 1: Three Case Studies 95

Chapter 6 Historical and Cultural Context of Caregiving in Snow 2: Three Case Studies 133

Chapter 7 Comparing Caregiving of Snow I with Snow 2 175

Chapter 8 Conclusions and Recommendations for Future Dementia Caregiving 197

Part 3 Looking Ahead in Dementia Care

Chapter 9 External Barriers to Quality Dementia Care 221

Chapter 10 Conclusion: Toward a New Vision of Dementia Care 239

Appendix A Linking Neuropathology to Specific Diseases 259

Appendix B Dementia as a Demographic Problem: Social and Policy Implications 261

Appendix C Contributions of Previous Ethnographic Studies to Nursing Home Research 264

Appendix D This Ethnography as a Journey 267

Appendix E Methodological Details 274

Works Cited and Recommended Reading 279

Index 299

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