Contemplating dementia confronts us with some of the most profound philosophical and ethical questions of our time. At its core, dementia challenges the very essence of personhood, identity, and what it means to live a meaningful life amidst a progressive neurological decline. The experience of dementia is not only a medical or biological phenomenon but also a cultural one, deeply shaped by the narratives and values that societies uphold. Understanding how these narratives influence care, policy, and social inclusion is critical as the global population ages and dementia becomes an increasingly common reality.
The latest special report, titled Living With Dementia: Learning from Cultural Narratives in Aging Societies, published by The Hastings Center for Bioethics, tackles this intersection of medical science, ethics, and culture head-on. This report responds to urgent calls from healthcare practitioners, social service providers, and researchers for more nuanced and constructive ways to talk about dementia. These conversations are essential for reshaping how societies support individuals living with dementia and their caregivers, moving beyond stigma and simplistic portrayals of the condition.
Dementia, encompassing Alzheimer’s disease and related neurodegenerative disorders, represents a range of conditions that degrade cognitive functions such as memory, speech, reasoning, and behavior. The report highlights the staggering prevalence of dementia, noting that over 7 million Americans live with the condition and that nearly 12 million unpaid caregivers — often family members — provide essential support. This demographic reality underscores the pressing need to rethink cultural attitudes and healthcare responses to dementia.
Cultural narratives profoundly impact the public and professional perceptions of dementia. Common portrayals that depict people with dementia as “already gone” or having “lost their self” propagate damaging stereotypes and social stigma. These narratives risk marginalizing individuals with dementia, effectively erasing their social identities and undermining their inclusion in community life. Importantly, such narratives have ramifications beyond language—they influence policy decisions, healthcare funding, and the structure of social support services.
The report draws upon interdisciplinary expertise, integrating insights from bioethics, disability studies, age studies, and social science research. Contributors emphasize the importance of critically examining and “repairing” flawed narratives that dominate the discourse around dementia. By doing so, we can foster new narratives that affirm the dignity, personhood, and value of individuals living with dementia. This reframing is essential for creating a more inclusive social environment and for developing effective care models responsive to the real-world complexities of dementia.
Highlighting the importance of envisioning “a good life” with dementia, the report explores practical considerations such as care needs, individual choices, and the economic costs involved. It encourages a move away from deficit-focused perspectives toward hopeful, person-centered approaches that recognize the potential for meaning, connection, and well-being even as cognitive decline progresses. This shift challenges assumptions about quality of life and priorities in dementia care, opening space for innovative care strategies that emphasize autonomy and community engagement.
The report also examines how different cultural groups within societies hold varied narratives about dementia, reflecting diverse values and social realities. Understanding these differences allows for culturally sensitive approaches to care and support. It stresses that global aging trends require flexible, context-aware responses that respect cultural diversity while promoting shared ethical commitments to dignity and inclusion.
Empirical research and community-based initiatives featured in the report showcase promising models that illuminate what living with dementia is truly like. These examples demonstrate how people with dementia and their caregivers can be supported to lead lives that maintain social participation, personal identity, and meaningful relationships. Such initiatives underscore the potential for combining scientific understanding with compassionate social practice.
Nancy Berlinger, senior research scholar at The Hastings Center, emphasizes that living well with dementia should not be imposed as an obligation on individuals or families. Dementia is inherently challenging, and the burden of coping should not fall solely on those affected or the healthcare system. Instead, societies must engage in more thoughtful dialogue about dementia’s implications for everyone, fostering programs and policies that support both individuals living with dementia and their caregivers.
The collaborative nature of the report, co-edited by experts including Erin Gentry Lamb, Kate de Medeiros, and Liz Bowen, reflects the necessity of multifaceted perspectives to address dementia’s ethical and social complexities. Their combined expertise in medical humanities, social gerontology, and bioethics ensures a holistic approach that bridges disciplinary boundaries.
This special report is part of The Hastings Center’s broader Bioethics for Aging Societies research program, which confronts ethical and social challenges brought on by demographic shifts and longevity. It builds upon previous work addressing justice, citizenship in aging, and end-of-life care for people with dementia, thus contributing to a growing body of scholarship that informs policy, clinical practice, and public understanding.
Funded partially by a 2022 Collaborative Research award from The National Endowment for the Humanities, along with support from The Gil Omenn and Martha Darling Fund for Trusted and Trustworthy Scientific Innovation, the report embodies a commitment to advancing ethical discourse through rigorous, interdisciplinary scholarship. While the findings and recommendations represent The Hastings Center’s perspectives, they aim to catalyze broader dialogues across healthcare, social services, and society at large.
As population aging accelerates globally, addressing dementia transcends clinical care; it engages our collective values and responsibilities. By reshaping cultural narratives and fostering inclusive communities, societies can better support individuals living with dementia and their caregivers, ensuring ethical, compassionate, and practical responses to one of the defining social challenges of our time.
Subject of Research: People
Article Title: Living With Dementia: Learning from Cultural Narratives of Aging Societies
News Publication Date: 18-Sep-2025
Web References: http://dx.doi.org/10.1002/hast.70014
Keywords: Social research, Dementia, Bioethics, Aging societies, Cultural narratives
