Dementia raises difficult and emotional questions.
What does it mean to be a person when memories begin to fade and communication becomes hard?
How can someone continue to live a meaningful life while dealing with a progressive brain condition?
What responsibilities do health care workers, neighbors, and societies have toward people living with dementia?
And how do the stories we tell, the words we use, and the beliefs we hold shape how people experience life with dementia?
These questions are at the heart of a special report called “Living with Dementia: Learning from Cultural Narratives in Aging Societies,” published by The Hastings Center for Bioethics.
The report urges everyone—whether they are family members, caregivers, professionals, or citizens—to think more carefully about how we talk about dementia and how that talk influences care and inclusion.
Dementia is a general term that includes conditions like Alzheimer’s disease. These illnesses usually appear with age, affect memory, thinking, speech, and behavior, and get worse over time. People with dementia eventually need full-time care.
Today, over 7 million Americans are living with dementia, and almost 12 million more—mostly family members—are providing unpaid care.
Sadly, people living with dementia are often spoken about as if they are “already gone” or have “lost themselves.” These ideas create stigma and may influence how society supports (or fails to support) dementia care.
If we think of people with dementia as no longer present, it becomes easier to ignore their needs and harder to justify funding health and community programs that could help them and their families.
This report brings together voices from different fields—bioethics, disability studies, aging studies, the humanities, social sciences, medical education, social work, and nursing.
The contributors ask readers to reflect on the stories that are told about dementia, both in everyday conversation and in public debates. They explore how to fix harmful narratives and imagine better ones.
The report invites readers to consider what a good life can look like for a person with dementia and for their caregivers. It encourages people to look at how different cultural groups talk about dementia and how these ideas support—or harm—those affected.
It also shares examples of research and community programs that give insight into the real-life experience of dementia and how we can build more supportive, inclusive communities.
Nancy Berlinger, a senior research scholar at The Hastings Center, explains that no one should feel pressured to be “living well” with dementia.
It is a hard condition to live with. But individuals and families shouldn’t be left to face it alone. Society has a responsibility to understand dementia as a common part of growing older and to respond with better care, better support, and better language.
The report is co-edited by Berlinger along with Erin Gentry Lamb of Case Western Reserve University, social gerontologist Kate de Medeiros, and Liz Bowen of SUNY Upstate Medical University.
Their work is a call to think differently about dementia—not as the end of life’s meaning, but as a stage where understanding, compassion, and community support matter more than ever.
If you care about dementia, please read studies about a simple solution to fight dementia and big causes of memory loss, dementia you need to know.
For more health information, please read studies that people who take high blood pressure medications have lower dementia risk and early indicators of dementia: 5 behaviour changes to look for after age 50.
The study is published in The Hastings Center Report.
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