About the Special Report

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 report follows earlier Hastings Center Report special reports on social dimensions of aging (“What Makes a Good Life in Late Life? Citizenship and Justice in Aging Societies,” 2018) and on health decision-making and care in the context of dementia (“Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives,” 2024). 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. A person with dementia will need an increasing amount of care, and many dementia care costs are not covered by health insurers. 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.

Nancy Berlinger and Erin Gentry Lamb codirected this project, and they coedited this report with Kate de Medeiros and Liz Bowen, who also served as the managing editor. Janelle Taylor served as the consulting editor. The editors and authors of this report are solely responsible for the content of this publication.

This report was made possible in part by a 2022 Collaborative Research award by The National Endowment for the Humanities to The Hastings Center. The purpose of this award was to develop the report's manuscripts for publication.

Additional funding supporting publication and dissemination was provided by The Hastings Center through The Gil Omenn and Martha Darling Fund for Trusted and Trustworthy Scientific Innovation.

The authors and editors are grateful to the anonymous peer reviewers of this report, the editorial committee of the Hastings Center Report, and Sana Baban, who provided research support.

The National Endowment for the Humanities: Democracy demands wisdom.