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9781479846962 Academic Inspection Copy

Listening to Dementia

Advocating for Dignity and Autonomy
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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 not only in nursing homes but also in the community, where the great majority of people with dementia live.
Emily K. Abel is Professor Emeritus at the UCLA-Fielding School of Public Health. She is the author of many books. The most recent are Elder Care in Crisis: How the Social Safety Net Fails Families and Gluten Free for Life: Celiac Disease, Medical Recognition, and the Food Industry, both published by NYU Press. In 2024 she received the Genevieve Miller Lifetime Achievement Award from the American Association for the History of Medicine.
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