The Meanings of Dementia: Interpreting Cultural Narratives of Aging Societies

FAIN: RZ-286981-22

Hastings Center (Garrison, NY 10524-4125)
Nancy Scerbo Berlinger (Project Director: December 2021 to present)

Preparation of a special supplement to the Hastings Center Report composed of 18 essays analyzing cultural narratives concerning dementia in the US and Europe to be made available in print and online. (18 months)

The Meanings of Dementia: Interpreting Cultural Narratives of Aging Societies is an 18-month project to produce new critical writing on meanings of dementia in diverse social groups in the United States and other aging societies. Dementia refers to a group of common, age-associated, progressively debilitating, ultimately terminal conditions affecting thought, memory, speech, and behavior. Humanities scholarship has long studied personal narratives; this humanities-social science collaboration will consider how greater attention to cultural narratives – concepts expressed through metaphors, tropes, images, and other representations that circulate through a society to make meaning out of experience – can translate into public humanities work fostering greater inclusion for fellow citizens living with dementia or providing dementia care. We will produce a print and open-access digital volume of 18 essays for peer review and print publication as a supplement to a scholarly journal.

Associated Products

Living with Dementia: Learning from Cultural Narratives of Aging Societies (Report)
Title: Living with Dementia: Learning from Cultural Narratives of Aging Societies
Author: Nancy Berlinger
Author: Erin Gentry Lamb
Author: Kate de Medeiros
Author: Liz Bowen
Abstract: This special report is the major product of a grant-funded research project of The Hastings Center for Bioethics. The project, The Meanings of Dementia: Interpreting Cultural Narratives of Aging Societies, is part of Bioethics for Aging Societies: The Hastings Center's interdisciplinary exploration of ethical and social challenges arising from population aging. This new report brings together perspectives from bioethics and humanities scholars, humanities researchers in the social sciences, and community-focused social work and nursing researchers to explore how cultural narratives—shared stories that convey and preserve ideas and values—shape public understanding about dementia and shape the lives of people living with dementia and of dementia caregivers. “Dementia” is a collective term for Alzheimer disease and related dementias, a group of common, aging-associated, progressively debilitating, ultimately terminal conditions that affect people's thoughts, memory, speech, and behavior. Dementia challenges ideas about the self, about social relationships, and about how aging societies, whose characteristic features include longer lives and smaller families, can provide care to the millions of people who will certainly need it. By centering the experience of living with dementia, this project considers how cultural narratives can represent people with dementia as fellow citizens, community members, and inhabitants of neighborhoods, not limited to their roles as patients, nor depicted as problems.
Date: 09/18/2025
Primary URL: https://onlinelibrary.wiley.com/doi/10.1002/hast.70014
Primary URL Description: This is the URL supplied by the report's publisher, Wiley.
Access Model: Open access

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