Rob Kennedy mingled with about a dozen other people in a community space in Clarks Summit, Pennsylvania.<\/p>\n
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.<\/p>\n
Kennedy comes to this memory cafe twice a month since being diagnosed with early onset Alzheimer\u2019s disease in his late 50s.<\/p>\n
Everyone here has a degree of memory loss or is a caregiver for someone with memory loss.<\/p>\n
Attendees colored on worksheets with an underwater theme. They drank coffee and returned to the breakfast bar for seconds on pastries.<\/p>\n
A quick round of trivia got everyone\u2019s minds working.<\/p>\n
\u201cWe start out with just little trivia \u2014 many of us cannot answer any of the questions,\u201d Kennedy said with a laugh.<\/p>\n
\u201cWe all have a good time going around,\u201d he added. \u201cYou know, we all try to make it fun.\u201d<\/p>\n
The northeastern Pennsylvania memory cafe Kennedy attends is one of more than 600<\/a> 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 \u2014 often the only expense is a small rental fee for the space.<\/p>\n As state and local health departments nationwide try to make sense of what the potential loss of $11 billion of federal health funding<\/a> will mean for the services they can offer their communities, memory cafe organizers believe their work may become even more important.<\/p>\n Losing Memory, and Other Things, Too<\/strong><\/p>\n Kennedy\u2019s diagnosis led him to retire, ending a decades-long career as a software engineer<\/a> at the University of Scranton<\/a>.<\/p>\n He recommends memory cafes to other people with dementia and their families.<\/p>\n \u201cIf they\u2019re not coming to a place like this, they\u2019re doing themselves a disservice. You got to get out there and see people that are laughing.\u201d<\/p>\n 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.<\/p>\n \u201cI came in and I was miserable,\u201d Kennedy said. \u201cI come in now and it\u2019s like, it\u2019s family, it\u2019s a big, extended family. I get to meet them. I get to meet their partners. I get to meet their children. So, it\u2019s really nice.\u201d<\/p>\n More than 6 million people<\/a> 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.<\/p>\n A new report from the Alzheimer\u2019s Association<\/a> found that 70% of caregivers reported that coordinating care is stressful. Socializing can also become more difficult after diagnosis.<\/p>\n \u201cOne thing I have heard again and again from people who come to our memory cafe is \u2018all of our friends disappeared,\u2019\u201d said Beth Soltzberg<\/a>, a social worker at Jewish Family and Children\u2019s Service of Greater Boston<\/a>, where she directs the Alzheimer\u2019s and related dementia family support program.<\/p>\n 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\u2019t 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 \u2014 because both can experience social isolation and distress after a diagnosis.<\/p>\n A 2021 study published in Frontiers in Public Health<\/a> indicated that even online memory cafes during the pandemic provided social support for both patients and their family members.<\/p>\n \u201cA memory cafe is a cafe which recognizes that some of the clients here may have cognitive impairment, some may not,\u201d said Jason Karlawish<\/a>, a geriatrics professor at the University of Pennsylvania\u2019s Perelman School of Medicine and the co-director of the Penn Memory Center<\/a>.<\/p>\n Karlawish regularly recommends memory cafes to his patients, in part because they benefit caregivers as well.<\/p>\n \u201cThe caregiver-patient dyad, I find often, has achieved some degree of connection and enjoyment in doing things together,\u201d Karlawish said. \u201cFor many, that\u2019s a very gratifying experience, because dementia does reshape relationships.\u201d<\/p>\n \u201cThat socialization really does help ease the stress that they feel from being a caregiver,\u201d said Kyra O\u2019Brien<\/a>, a neurologist who also teaches at Penn\u2019s Perelman School of Medicine. \u201cWe know that patients have better quality of life when their caregivers are under less stress.\u201d<\/p>\n An Affordable Way To Address a Growing Problem<\/strong><\/p>\n As the population grows older<\/a>, the number of available family caregivers is decreasing, according to the AARP Public Policy Institute.<\/a> The report found that the number of potential caregivers for an individual 80 or older will decrease significantly by 2050.<\/p>\n In 2024, the Alzheimer\u2019s Association issued a report projecting a jump<\/a> in dementia cases in the U.S. from an estimated 6.9 million people age 65 or older currently living with Alzheimer\u2019s 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<\/a>.<\/p>\n As cases of memory loss are projected to rise, the Trump administration is attempting to cut billions in health spending. Since memory cafes don\u2019t 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.<\/p>\n \u201cWe\u2019re fighting off some pretty significant Medicaid cuts at the congressional level,\u201d said Georgia Goodman<\/a>, director of Medicaid policy for LeadingAge<\/a>, a national nonprofit network of services for people as they age. \u201cMedicaid is a program that doesn\u2019t 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.\u201d<\/p>\n The nonprofit MemoryLane Care Services<\/a> operates two memory cafes in Toledo, Ohio. They\u2019re virtually free to operate, because they take place in venues that don\u2019t require payment, according to Salli Bollin<\/a>, the executive director.<\/p>\n \u201cThat really helps from a cost standpoint, from a funding standpoint,\u201d Bollin said.<\/p>\n 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.<\/p>\n The memory cafe that Rob Kennedy attends in Pennsylvania costs about $150 a month to run, according to the host organization, The Gathering Place<\/a>.<\/p>\n \u201cThis is a labor of love,\u201d said board member Paula Baillie<\/a>, referring to the volunteers who run the memory cafe. \u201cThe fact that they\u2019re giving up time \u2014 they recognize that this is important.\u201d<\/p>\n 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.<\/p>\n Even though memory cafes are inexpensive and not dependent on federal funding, they could face indirect obstacles because of the Trump administration\u2019s recent funding cuts.<\/p>\n Organizers worry the loss of federal funds could negatively affect the host institutions, such as libraries and other community spaces.<\/p>\n Memory Cafe Hot Spot: Wisconsin<\/strong><\/p>\n At least 39 states have hosted memory cafes recently, according to Dementia Friendly America.<\/a> Wisconsin has the most \u2014 more than 100.<\/p>\n 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>, a professor emerita of psychology at the University of Wisconsin-Oshkosh<\/a>. She co-founded the Fox Valley Memory Project<\/a>, which oversees 14 memory cafes<\/a>.<\/p>\n \u201cThey\u2019ve operated on the grassroots, they\u2019ve operated on pretty small budgets and a lot of goodwill,\u201d she said.<\/p>\n Since 2013, Wisconsin has also had a unique network for dementia care, with state-funded dementia care specialists<\/a> for each county and federally recognized tribe in Wisconsin. The specialists help connect individuals with cognitive impairment to community resources, bolstering memory cafe attendance.<\/p>\n 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.<\/p>\n 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.<\/p>\n Their tour skipped over the typical tourist hot spots, taking them to more humble settings.<\/p>\n \u201cWe saw church basements and senior center dining rooms and assisted living dining rooms,\u201d she said. \u201cThat, to me, is really the core of memory cafes. It\u2019s hospitality. It\u2019s reaching out to people you don\u2019t know and welcoming them, and that\u2019s what they did for us.\u201d<\/p>\n After her trip, McFadden started applying for grants and scouting locations that could host memory cafes in Wisconsin.<\/p>\n She opened her first one in Appleton, Wisconsin, in 2012, just over a year after her transformative trip to the U.K.<\/p>\n These days, she points interested people to a national directory of memory cafes hosted by Dementia Friendly America<\/a>. The organization\u2019s Memory Cafe Alliance<\/a> also offers training modules \u2014 developed by McFadden and her colleague Anne Basting<\/a> \u2014 to help people establish cafes in their own communities, wherever they are.<\/p>\n \u201cThey\u2019re not so hard to set up; they\u2019re not expensive,\u201d McFadden said. \u201cIt doesn\u2019t require an act of the legislature to do a memory cafe. It takes community engagement.\u201d<\/p>\n This article is part of a partnership with<\/em> <\/em>NPR<\/em><\/a> and <\/em>WVIA<\/em><\/a>.<\/em><\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\nUSE OUR CONTENT<\/h3>\n