Listening to Dementia

Advocating for Dignity and Autonomy

Emily K. Abel

• Publisher: NYU Press
• Year: 2026
• Print ISBN:
  9781479846962
• eBook ISBN:
  9781479846979
• Topic: Social Sciences
• Subtopic: Caregiving
• Index: Social Sciences

How dementia affects those living with the condition, their carers, and their advocacy

In Listening to Dementia, Emily K. Abel demonstrates that recognizing the voices of people with dementia can fundamentally alter our understanding of both their lived experience and the discourse surrounding their care. She focuses on the memoirs of twelve individuals living with the condition who became advocates on their own behalf. The authors challenge reigning understandings of dementia while operating within familiar cultural notions.

Abel addresses topics including the impact of stigma and discrimination on the lives of people with dementia, their portrayal in the vast advice literature for carers, the divergence between the views of carers and those of the people they care for, the reasons some people with dementia seek to end their lives before the disease reaches the final stage, and how dementia advocates react to carers' attempts to manage behaviors they consider troubling and inappropriate.

Listening to Dementia breaks new ground both by analyzing the memoirs of people with dementia who became advocates and by discussing the administration of antipsychotic medications to manage behavior in the community, where the great majority of people with dementia live.

Table of contents

• Cover
• Title Page
• Copyright Page
• Contents
• A Note on Language
• Introduction
• 1. Advice for Dementia Carers
• 2. Advocates and Carers: Divergent Perspectives
• 3. Medicating Behavior
• 4. A Fate Worse Than Death
• Conclusion
• Acknowledgments
• Notes
• Index
• About the Author