As federal healthcare resources shrink, memory cafes help dementia patients and their caregivers

As federal healthcare resources shrink, memory cafes help dementia patients and their caregivers

Rob Kennedy mingled with about a dozen other people in a common room at the Summit in Clarks, Pennsylvania.

Decorated with a theme under the Sea, the room featured a streamered balloon arch designed to look like jellyfish and a cloud of clear balloons that mimicked ocean bubbles.

Kennedy has been coming to this Memory Cafe twice a month since he was diagnosed with Alzheimer's disease in the late '50s.

Everyone here has some level of memory loss or is a caregiver for someone with memory loss.

Participants were colored on worksheets with an underwater theme. They drank coffee and returned to the pastry breakfast bar for seconds.

A quick round of running trivia to get everyone started running.

“We start with just a little bit of trivia – a lot of us can’t answer any of the questions,” Kennedy said with a laugh.

“We all have a good time walking around,” he added. “You know, we all try to make it fun.”

The Northeastern Pennsylvania Memory Cafe Cafe Kennedy is one of more than 600 nationwide, according to Dementia Friendly America. The gatherings for people with cognitive disabilities and their caregivers are relatively cheap and easy to run - often the only cost is a small rental fee for the space.

As state and local health departments nationwide try to recognize the potential loss of $11 billion in health funding for the services they can provide to their communities, Memory Cafe organizers believe their work could become even more important.

Lose memory and other things too

Kennedy's diagnosis led him to retirement, ending a decades-long career as a software engineer at the University of Scranton.

He recommends memory cafés to other people with dementia and their families.

"If they don't come to a place like this, they're doing themselves a disservice. You need to get out there and see people laughing."

The memory cafes he attends happen twice a month. They have given him purpose, Kennedy said, and are helping him deal with negative emotions surrounding his diagnosis.

“I came in and I was unhappy,” Kennedy said. "I come in now and it's like, it's a family, it's a big extended family. I get to know them. I get to know their partners. I get to know their kids. So, it's really nice."

More than 6 million people in the United States have been diagnosed with some form of dementia. The diagnosis can be stressful in terms of relationships, especially for family members who are the primary caregivers.

A new report from the Alzheimer's Association found that 70% of caregivers said coordinating care is stressful. Socialization can also become more difficult after diagnosis.

“One thing I've heard over and over again from people who come to our memory cafe is that all of our friends are gone,” said Beth Soltzberg, a social worker at Jewish Family and Children's Services of Greater Boston, where she directs the Alzheimer's and Related Dementia Family Support Program.

The involvement of caregivers sets memory cafes apart from other programs that serve people with cognitive impairments, such as: B. Adult day care. Memory Cafés do not offer formal therapies. In a memory cafe, it encourages fun together and supports the well-being of the participants. And this support extends to the patient and their caregiver – because both can experience social isolation and distress following a diagnosis.

A 2021 study published in Frontiers of Public Health found that even online storage cafes provided social support to both patients and their family members during the pandemic.

“A memory cafe is a cafe that recognizes that some of the customers here may have cognitive impairments, some may not,” said Jason Karlawish, professor of geriatrics at the University of Pennsylvania Perelman School of Medicine and co-director of the Penn Memory Center.

Karlawish regularly recommends memory cafés to his patients, partly because they also benefit caregivers.

“The nursing dyad I often find has achieved a certain level of connection and enjoyment in doing things together,” Karlawish said. “For many, this is a very pleasant experience because dementia formulates relationships.”

“That socialization really alleviates the stress 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 a better quality of life when their caregivers are less stressed.”

An affordable way to address a growing problem

According to the AARP Public Policy Institute, the number of available family caregivers decreases as the population ages. The report found that the number of potential caregivers for an individual 80 or older will decline significantly by 2050.

In 2024, the Alzheimer's Association released a report that predicted a jump in dementia cases in the United States from an estimated 6.9 million people age 65 with Alzheimer's disease to 13.8 million people with Alzheimer's disease 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 predicted, the Trump administration is trying to cut billions in healthcare spending. Because memory cafes do not rely on federal dollars, they can become an even more important part of the continuum of care for people with memory loss and their families.

“We're fighting some pretty significant Medicaid cuts at the congressional level,” said Georgia Goodman, director of Medicaid policy for Leadingage, a national nonprofit network of aging services. “Medicaid is a program that doesn’t necessarily pay for memory cafes, but thinks about ensuring that the long-term care continuum and the financing mechanisms that support it are robust and continue to be available to people.”

The nonprofit MemoryLane Care Services operates two memory cafes in Toledo, Ohio. They are virtually free to operate because they take place in locations that do not require payment, according to Salli Bollin, the executive director.

“This really helps from a funding standpoint,” Bollin said.

One of the memory cafes takes place once a month at a local cafe. The other meets at the Toledo Museum of Art. MemoryLane Care Services provides dementia sensitivity training to museum staff so they can lead tours for Memory Cafe participants.

The Memory Cafe that Rob Kennedy attends in Pennsylvania costs about $150 a month, according to the host organization, the meeting place.

“This is a labor of love,” board member Paula Baillie said, referring to the volunteers who run the Memory Cafe. “The fact that they’re giving up time — they realize this is important.”

The monthly budget equals crafts, books, coffee, snacks, and some utilities for the two-hour meetings. Local foundations offer grants to help cover these costs.

Although memory cafes are cost-effective and do not rely on federal funding, they may face indirect obstacles due to the Trump administration's recent funding cuts.

Organizers fear the loss of federal funding could negatively impact host institutions such as libraries and other community spaces.

Memory Cafe Hot Spot: Wisconsin

According to Dementia Friendly America, at least 39 states have recently hosted Memory Cafés. Wisconsin has the most – more than 100.

The state has a strong infrastructure focused on memory care, which keeps its memory cafes running regardless of what happens 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 operated at a grassroots level, they operated with fairly small budgets and a lot of good will,” she said.

Since 2013, Wisconsin also has a unique dementia care network with state-funded dementia specialists for every county and for every federally recognized tribe in Wisconsin. The specialists help connect individuals with cognitive impairments to community resources and strengthen memory attendance.

McFadden first heard about memory cafes in 2011, before they were popular in the United States. She researched memory and teaching courses on aging.

McFadden turned to memory cafes in the UK, where the model was already popular and well-connected. Memory Cafe organizers invited her to visit and observe in person, so she planned a trip overseas with her husband.

Their tour skipped the typical tourist hotspots and took them to more modest surroundings.

“We’ve seen church basements and senior center dining rooms and supportive living dining rooms,” she said. "That to me is really the essence of the memory cafes. It's hospitality. It's reaching out to people you don't know and welcoming them, and that's what they've done for us."

After her trip, McFadden began applying for grants and scouting sites to host memory cafes in Wisconsin.

She opened her first in Appleton, Wisconsin, in 2012, just over a year after her transformative trip to the UK

These days, she refers 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 that hard to build; they're not expensive," McFadden said. "It doesn't take any action from the legislature to make a memorial cafe. It takes community engagement."

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