As health grants shrink, memory cafes help dementia patients and caregivers

Miami Herald

a day ago

Rob Kennedy mingled with about a dozen other people in a community space in Clarks Summit, Pennsylvania.
The room, decorated with an under-the-sea theme, had a balloon arch decked out with streamers meant to look like jellyfish and a cloud of clear balloons mimicking ocean bubbles.
Kennedy comes to this memory cafe twice a month since being diagnosed with early onset Alzheimer's disease in his late 50s.
Everyone here has a degree of memory loss or is a caregiver for someone with memory loss.
Attendees colored on worksheets with an underwater theme. They drank coffee and returned to the breakfast bar for seconds on pastries.
A quick round of trivia got everyone's minds working.
'We start out with just little trivia — many of us cannot answer any of the questions,' Kennedy said with a laugh.
'We all have a good time going around,' he added. 'You know, we all try to make it fun.'
The northeastern Pennsylvania memory cafe Kennedy attends is one of more than 600 around the country, according to Dementia Friendly America. The gatherings for people with cognitive impairment and their caregivers are relatively cheap and easy to run — often the only expense is a small rental fee for the space.
As state and local health departments nationwide try to make sense of what the potential loss of $11 billion of federal health funding will mean for the services they can offer their communities, memory cafe organizers believe their work may become even more important.
Losing memory, and other things, too
Kennedy's diagnosis led him to retire, ending a decades-long career as a software engineer at the University of Scranton.
He recommends memory cafes to other people with dementia and their families.
'If they're not coming to a place like this, they're doing themselves a disservice. You got to get out there and see people that are laughing.'
The memory cafes he attends happen twice a month. They have given him purpose, Kennedy said, and help him cope with negative emotions around his diagnosis.
'I came in and I was miserable,' Kennedy said. 'I come in now and it's like, it's family, it's a big, extended family. I get to meet them. I get to meet their partners. I get to meet their children. So, it's really nice.'
More than 6 million people in the U.S. have been diagnosed with some form of dementia. The diagnosis can be burdensome on relationships, particularly with family members who are the primary caregivers.
A new report from the Alzheimer's Association found that 70% of caregivers reported that coordinating care is stressful. Socializing can also become more difficult after diagnosis.
'One thing I have heard again and again from people who come to our memory cafe is 'all of our friends disappeared,'' said Beth Soltzberg, a social worker at Jewish Family and Children's Service of Greater Boston, where she directs the Alzheimer's and related dementia family support program.
The inclusion of caregivers is what distinguishes memory cafes from other programs that serve people with cognitive impairment, like adult day care. Memory cafes don't offer formal therapies. At a memory cafe, having fun together and being social supports the well-being of participants. And that support is for the patient and their caregiver — because both can experience social isolation and distress after a diagnosis.
A 2021 study published in Frontiers in Public Health indicated that even online memory cafes during the pandemic provided social support for both patients and their family members.
'A memory cafe is a cafe which recognizes that some of the clients here may have cognitive impairment, some may not,' said Jason Karlawish, a geriatrics professor at the University of Pennsylvania's Perelman School of Medicine and the co-director of the Penn Memory Center.
Karlawish regularly recommends memory cafes to his patients, in part because they benefit caregivers as well.
'The caregiver-patient dyad, I find often, has achieved some degree of connection and enjoyment in doing things together,' Karlawish said. 'For many, that's a very gratifying experience, because dementia does reshape relationships.'
'That socialization really does help ease the stress that they feel from being a caregiver,' said Kyra O'Brien, a neurologist who also teaches at Penn's Perelman School of Medicine. 'We know that patients have better quality of life when their caregivers are under less stress.'
An affordable way to address a growing problem
As the population grows older, the number of available family caregivers is decreasing, according to the AARP Public Policy Institute. The report found that the number of potential caregivers for an individual 80 or older will decrease significantly by 2050.
In 2024, the Alzheimer's Association issued a report projecting a jump in dementia cases in the U.S. from an estimated 6.9 million people age 65 or older currently living with Alzheimer's disease to 13.8 million people by 2060. It attributed this increase primarily to the aging of the baby boom generation, or those born between 1946 and 1964.
As cases of memory loss are projected to rise, the Trump administration is attempting to cut billions in health spending. Since memory cafes don't rely on federal dollars, they may become an even more important part of the continuum of care for people with memory loss and their loved ones.
'We're fighting off some pretty significant Medicaid cuts at the congressional level,' said Georgia Goodman, director of Medicaid policy for LeadingAge, a national nonprofit network of services for people as they age. 'Medicaid is a program that doesn't necessarily pay for memory cafes, but thinking about ensuring that the long-term care continuum and the funding mechanisms that support it are robust and remain available for folks is going to be key.'
The nonprofit MemoryLane Care Services operates two memory cafes in Toledo, Ohio. They're virtually free to operate, because they take place in venues that don't require payment, according to Salli Bollin, the executive director.
'That really helps from a cost standpoint, from a funding standpoint,' Bollin said.
One of the memory cafes takes place once a month at a local coffee shop. The other meets at the Toledo Museum of Art. MemoryLane Care Services provides the museum employees with training in dementia sensitivity so they can lead tours for the memory cafe participants.
The memory cafe that Rob Kennedy attends in Pennsylvania costs about $150 a month to run, according to the host organization, The Gathering Place.
'This is a labor of love,' said board member Paula Baillie, referring to the volunteers who run the memory cafe. 'The fact that they're giving up time — they recognize that this is important.'
The monthly budget goes toward crafts, books, coffee, snacks, and some utilities for the two-hour meetings. Local foundations provide grants that help cover those costs.
Even though memory cafes are inexpensive and not dependent on federal funding, they could face indirect obstacles because of the Trump administration's recent funding cuts.
Organizers worry the loss of federal funds could negatively affect the host institutions, such as libraries and other community spaces.
Memory cafe hot spot
At least 39 states have hosted memory cafes recently, according to Dementia Friendly America. Wisconsin has the most — more than 100.
The state has a strong infrastructure focused on memory care, which should keep its memory cafes running regardless of what is happening at the federal level, according to Susan McFadden, a professor emerita of psychology at the University of Wisconsin-Oshkosh. She co-founded the Fox Valley Memory Project, which oversees 14 memory cafes.
'They've operated on the grassroots, they've operated on pretty small budgets and a lot of goodwill,' she said.
Since 2013, Wisconsin has also had a unique network for dementia care, with state-funded dementia care specialists for each county and federally recognized tribe in Wisconsin. The specialists help connect individuals with cognitive impairment to community resources, bolstering memory cafe attendance.
McFadden first heard about memory cafes in 2011, before they were popular in the United States. She was conducting research on memory and teaching courses on aging.
McFadden reached out to memory cafes in the United Kingdom, where the model was already popular and well connected. Memory cafe organizers invited her to visit and observe them in person, so she planned a trip overseas with her husband.
Their tour skipped over the typical tourist hot spots, taking them to more humble settings.
'We saw church basements and senior center dining rooms and assisted living dining rooms,' she said. 'That, to me, is really the core of memory cafes. It's hospitality. It's reaching out to people you don't know and welcoming them, and that's what they did for us.'
After her trip, McFadden started applying for grants and scouting locations that could host memory cafes in Wisconsin.
She opened her first one in Appleton, Wisconsin, in 2012, just over a year after her transformative trip to the U.K.
These days, she points interested people to a national directory of memory cafes hosted by Dementia Friendly America. The organization's Memory Cafe Alliance also offers training modules — developed by McFadden and her colleague Anne Basting — to help people establish cafes in their own communities, wherever they are.
'They're not so hard to set up; they're not expensive,' McFadden said. 'It doesn't require an act of the legislature to do a memory cafe. It takes community engagement.'
This article is part of a partnership with NPR and WVIA.
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