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.”
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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 b