Sharon Kleinhelter started noticing changes in her husband, J.P., in 2007, but he did not receive an official diagnosis of mid-stage Alzheimer's disease until 2012, when he was age 66. At the time, he was still working at his Indianapolis construction business, had many friends and was very outgoing.
From that point on, Kleinhelter tried to ensure that her husband continued socializing. But as the disease progressed, it became more difficult to take him out into the community.
“J.P. was a very social, friendly, nice guy. I couldn't control him. As nice as he was, he could be disruptive,” she recalls. “He automatically touched people's arms, and some don't like that. He was just friendly. He couldn't talk quietly and couldn't sit still for long. When he wanted to go, I had to go, too. It became too hard.”
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Then, Connor Prairie, a living history museum that recreates 19th-century life in Fishers, Indiana, where the couple lived, began offering a memory café — a social program for those living with dementia and their caregivers.
“For J.P., I think it was just that safe place to go to where it didn't matter if he said the same thing over and over and over again,” Kleinhelter says. “Everybody understood, so that made me comfortable, too.”
Antidote to isolation
Bère Miesen, a Dutch psychiatrist, is credited with creating the first memory café in the Netherlands in the late 1990s to raise awareness of and fight stigmas associated with dementia and to provide support for patients and their caregivers.
After spreading across Europe, the concept took root in the United States in 2008, according to Dave Weidderich, founder of the Memory Café Directory, which catalogs and provides information on such meeting spots.
Top states for memory cafés
These are the 10 states with the most memory cafés as of June 2022, according to the Memory Café Directory:
1. Wisconsin (138)
2. Massachusetts (93)
T3. Illinois (41)
T3. Minnesota (41)
5. Washington (37)
6. Texas (31)
7. Pennsylvania (29)
8. California (21)
9. Virginia (19)
10. North Carolina (18)
Weidderich’s site now lists more than 1,000 in-person and virtual memory cafés across the U.S. and in four other countries. They are held in restaurants, coffee shops, hospitals, libraries, museums, schools, colleges and universities, community and senior centers, senior living communities, and faith-based organizations. All offer socialization, and many hold events centered around history, music, dancing and other subjects.
Memory cafés are not a form of respite care. Rather, they offer a place where caregivers and care recipients can socialize and connect with others in similar situations.
J.P. Kleinhelter passed away in June 2020. As she looks back on her caregiving experience, Sharon Kleinhelter realizes how isolated she became while caring for him.
“I wish people could know from the start of the diagnosis that memory cafés are available for them,” she says. “It lets them know they’re not alone in this caregiving and they know they have a safe place to go.”
As a longtime caregiver for my dad, Robert, who had Alzheimer’s and lived with me for several years before his death in June 2018, I understand the challenge of providing socialization.
Once Dad started talking loudly throughout plays and concerts, there were very few social activities I could take him to. But I did all I could to get him out to the grocery store, the mall and restaurants for as long as possible.
Most people were helpful and kind, but it can be difficult. That's why you rarely see those living with dementia out in the community.
Return to Connor Prairie
I would have loved to have taken Dad to a memory café, so when I heard that Connor Prairie was offering one in a unique setting, I set up a trip to check it out. Growing up in Indiana and Ohio, I had visited the 1,000-acre farm many times with my family, so it was also a trip down memory lane.
Connor Prairie’s memory cafés are offered in partnership with Dementia Friends Indiana and the Central Indiana Council on Aging. They are free and held quarterly. (They were monthly before the pandemic, and the museum aims to return to that schedule when participation returns to pre-COVID levels.)
Themes vary; on the day I visited, the topic was games and toys that participants, their children or their parents might have played with, dating back as far as 1900. I saw people living with dementia light up with joy as they reminisced, held toys, played games and colored in coloring books. All engaged in a sing-along, much to the delight of their caregivers.
Several caregivers told me they didn't see their loved ones interact at that level at home. It was a relaxed yet appropriately stimulating setting.
Other popular themes have involved live swing music, holiday celebrations and baking. An April 2022 event focused on farm animals, with participants meeting sheep, goats, chickens and rabbits cared for by Conner Prairie’s agriculture staff.
“We had a group from an assisted living facility here, and their team lead said that this was the first outing they have had since 2019,” says Kelsey VanVoorst, education manager at Connor Prairie.
Guests could see, feel, hear and, of course, smell the barn and the animals, tapping into senses that can help stir memories.
“There was a gentleman who had an in-depth conversation with one of our agriculture staff members about the cattle and horses he had when he was growing up,” VanVoorst says. “He remembered the breed of animals and the chores he had to do every morning. Their team lead said that she hadn’t seen him hold a conversation that long in quite a while.”
Memory cafés go virtual
When the COVID-19 pandemic shut down most in-person events in spring of 2020, many memory cafés began offering activities, interaction and entertainment via video chat. The Memory Café Directory now has a Café Connect section listing nearly 200 online cafés with information on date, time and language spoken, and links to attend.
Weidderich tells the story of a woman from Massachusetts who recently participated in a virtual memory café in Brazil. “Her native language is Portuguese, and she had the opportunity to engage in a safe and dementia-friendly environment, using a familiar language, and reportedly had a grand time,” he says.
While the pandemic brought many hardships, one silver lining is that many isolated older adults began using technology for communication and entertainment. Virtual memory cafés offer new opportunities for those who can’t attend in-person events due to their condition or other circumstances.
“Although born out of necessity, there have been significant and hopefully long-term benefits from [memory cafés] being forced into the virtual world,” Weidderich says. “My hope is that the virtual format will make a very positive impact on the isolation that many in the dementia community experience."
Conner Prairie held three virtual memory cafés during the pandemic shutdown, and while attendance was sparse and sporadic, they gave participants a chance to engage and participate. In-person events resumed in June 2021.
“It has been a relief for folks to just be able to get out and about again!” VanVoorst says.
Connecting with other caregivers
When I visited the Connor Prairie memory café, I was struck by two men and two women sitting at a table chatting away as they played the venerable board game Chutes and Ladders. I couldn't tell for sure who among the group had dementia. They were all laughing and enjoying each other’s company, and I assumed they were longtime friends.
But when I spoke with one of the women (who asked that her name be withheld), I discovered that her husband and the other man both had dementia and that the two couples had never met.
She had brought her husband because she thought the memory café would be good for him, but she found it personally beneficial as well.
“I didn't realize how much I needed to connect with other caregivers. I feel so supported here,” she said. The two women had already discussed getting the men together again soon.
Sharon Kleinhelter felt the same way. As J.P.'s main caregiver, she did receive help from her adult children; but she often felt isolated, too.
“The memory café gave J.P. a new place to repeat his one-liners, laugh and interact in a safe, friendly environment. I'm a very social person, too, so cutting me off from that was hard,” she says. “The memory café fed my soul.”
This article, originally published June 4, 2019, has been updated to reflect J.P. Kleinhelter’s passing and the effect of COVID-19 on memory cafés.