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 gets 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."
This memory cafe in northeast Pennsylvania is one of more than 600 across the country. These 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.
Kennedy's diagnosis forced 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 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."
Losing memory, and other things too
More than six 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 or support. At a memory cafe, having fun together and being social is the support. And that support is for the patient and their caregiver — because both can suffer from social isolation and distress after a diagnosis.
A 2021 study from 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 the 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."
As the population grows older, the number of available family caregivers is decreasing, according to the AARP's 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 currently living with Alzheimer's dementia 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.
An affordable way to address a growing problem
As cases of memory loss are expected 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 Medicare policy for Leading Age, a national nonprofit network of aging services.
Although Medicaid doesn't necessarily pay for memory cafes, they can play a part in long-term care, Goodman explained.
The nonprofit Memory Lane 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. Memory Lane 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 Northeast 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." Baillie said.
The monthly budget goes to crafts, books, coffee, snacks and some utilities for the two-hour meetings. Local foundations provide grants that help her cover those costs.
Even though memory cafes are inexpensive and not dependent on federal funding, they could still face indirect obstacles as a result of the Trump administration's recent funding cuts.
Organizers worry that loss of federal funds could negatively impact the local institutions where they take place, such as libraries and other community spaces.
Wisconsin has become a memory cafe hotspot
At least 39 states have hosted memory cafes recently, according to Dementia Friendly America. Wisconsin has the most, with more than 100 memory cafes operating in the state.
Wisconsin has a strong infrastructure focused on memory care, which should keep the state's 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 hotspots, 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," McFadden added.
"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 UK.
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 start establish the cafes in their own communities, wherever they are in the country.
"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 story comes from NPR's health reporting partnership with WVIA and KFF Health News.
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