For baby boomers and their parents, there’s no biomedical solution in sight for preventing or curing dementia. That means we need to help people face the prospect of living with dementia and support families affected by it through dementia-friendly policies aligned with their needs.
Where should we start? One place is at the movies.
While I was in Liverpool this summer for the annual conference of the British Society of Gerontology, I spotted a poster for a monthly series of classic films at a local cinema. Printed inside a big pink circle in the poster’s corner were the words “dementia friendly.” I took a closer look. Tickets were about half the price of the usual discount for older adults, and free to caregivers. Screenings were at midday, with free tea and coffee. There was a 20-minute break halfway through the film. And the series was open to the public.
A Google search turned up dementia-friendly screenings and series at cinemas throughout the United Kingdom, plus tips from the Alzheimer’s Society on how to select films for individuals with dementia and how to accommodate their needs.
The “dementia friendly” movement is well-developed in the U.K., as well as in Australia, Ireland, and other aging societies. In addition to making sure that people with dementia and caregivers have a voice in developing dementia programs, U.K.-based efforts like the Dementia Engagement and Empowerment Project (DEEP) engage people with dementia or caregivers as co-investigators in participatory research.
At the gerontology conference, a session on creating a dementia supportive community in rural North Wales was co-presented by a university researcher and a co-researcher living with dementia. The co-researcher noted that he and other participants with cognitive impairments need logistical help (“we don’t do planning”), transportation, and non-stressful arrangements. For example, meetings begin with tea and cake, a familiar form of local hospitality that encourages discussion and social ties among people with dementia, caregivers, researchers, and social service providers. Materials are shared in print ahead of meetings so participants with dementia would not need to process new information quickly or in unfamiliar formats.
Co-researchers proved to be the key in explaining the project’s goals to other older adults, and were able to stress that dementia research didn’t just mean doing brain scans. Peer-to-peer outreach led to many voices contributing insights on how to build dementia- friendly community life. The North Wales network now hosts informal meetups; a dinner group for people with early-onset dementia; peer support for people newly diagnosed with dementia; education for police officers and taxi drivers; and a project to collect Welsh-language music recordings familiar to locals from childhood.
The U.K.-based National Evaluation of Dementia Friendly Communities, also known as DEMCOM, is conducting a national evaluation of nearly 300 dementia-friendly projects to understand how they help people live well. The study, which includes as co-researchers individuals with dementia and caregivers, has found that dementia friendliness involves far more than “putting up signs” to indicate that a business is dementia friendly or to help people with cognitive impairment navigate public places. Insights from co-researchers suggest that some individuals with dementia who welcome opportunities to socialize in relaxed, supportive environments may not want to call attention to their diagnoses in a supermarket check-out lane marked as “dementia friendly.”
In the U.S., some cities, such as Denver, have started education programs to help community members recognize dementia symptoms and learn how to assist people with symptoms such as confusion. The Museum of Modern Art’s Alzheimer’s Project, popularly known as Meet Me at MoMA, is an example of an initiative to make museums more accessible to people with dementia and to dementia caregivers. But what about in everyday life?
When I went looking for U.S. examples of the types of projects — local, sociable, accessible, practical — that I’d learned about and observed in the U.K., I often found them in public libraries. Some regularly host Memory Cafes, started in the Netherlands over 20 years ago as dementia-friendly gatherings. Dementia Friendly America, a network launched in 2015 based on a statewide initiative in Minnesota, has worked with AARP’s network of age-friendly communities on recommendations for collaboration between these related but different movements.
I learned about a restaurant in Huntington, W.Va., that has started a monthly dementia-friendly night. The restaurant’s managers and another community member, all with family experiences of dementia, brainstormed a welcoming environment for people with dementia and for caregivers. “We know what people with dementia and their caregivers go through,” restaurant co-manager Bradley Tweel told the Washington Post. “We know that they could probably use a night out together, and we wanted to show that we completely understand.”
A caregiver’s advice to wait staff on how to support people who have difficulty processing new information — don’t offer seven daily specials — reflects the compassion, hospitality, and practical wisdom evident in this and other grassroots projects.
Dementia-friendly initiatives are not care systems. They do not fix basic problems such as inadequate insurance coverage for services and supports needed by individuals with dementia. In the U.S., out-of-pocket costs are 81% higher for dementia compared to cancer or heart disease, largely because so many services needed for this common age-associated condition are not covered by insurers. These problems, which make a dementia diagnosis even harder to bear, need policy solutions.
The absence of effective treatments for dementia means we must look at this increasingly common condition in a new way, centered on the experience of people facing dementia in their lives today, not around what biomedicine may offer in the future. As more and more Americans develop dementia or become dementia caregivers, dementia friendly projects can spark our imaginations about what makes a community a good place to live and show us how to learn from people with dementia and their caregivers as integral members of communities in aging societies.
Nancy Berlinger, Ph.D., is a research scholar at The Hastings Center, where she directs the Bioethics for Aging Societies: Informing Policy and Practice project.