En español | When Sharon Kleinhelter and her husband, J.P., of Fishers, Ind., received an official diagnosis of his mid-stage Alzheimer's disease at age 66 in 2012, he was still working at his own business, had many friends and was very outgoing. She has tried to keep her husband socializing ever since, but as the disease progressed it became more difficult to take him out into the community. “J.P. is a very social, friendly, nice guy. I can't control him. As nice as he is, he's disruptive,” Kleinhelter said. “He automatically touches people's arms, and some don't like that. He's just friendly. He can't talk quietly and can't sit still for long. When he wants to go, I have to go, too. It's just too hard.”
Then, Connor Prairie, a living history museum that recreates 19th-century life in Fishers, began offering a Memory Café, a social program for those living with dementia and their caregivers. “For J.P. I think it's just that safe place to go to where it doesn't matter if he says the same thing over and over and over again,” said Kleinhelter. “Everybody understands, so that makes me comfortable, too.”
Memory cafes, a concept some credit to psychiatrist Bere Miesen in the Netherlands (others say the first memory cafe was in Santa Fe, N.M., in 2008), have spread across the nation. Nearly 600 are now listed in the Memory Cafe Directory, which started cataloguing the meeting spots in 2016. They are offered in restaurants, coffee shops, hospitals, libraries, museums, schools, colleges and universities, community and senior centers, senior living communities and faith-based organizations. Activities at the events vary, including education, music, dancing and arts; all offer socialization. Memory cafes are not a form of respite care; instead, they offer a place where both caregiver and care recipient can socialize together and connect with others in similar situations.
As a longtime caregiver for my dad, Robert, who had Alzheimer's and lived with me until he died in June 2018, I understand the challenge of providing socialization. I did all I could to get Dad 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. Dementia caregiving can be very isolating. I would have loved to have taken Dad to a memory cafe, so when I heard that Connor Prairie was offering one in a unique setting, I set up a trip. I'd visited the 1,000-acre farm many times with my family during my childhood growing up in Indiana and Ohio, so it was a trip down memory lane for me, too.
The Connor Prairie Memory Café, offered in partnership with Dementia Friends Indiana and the Central Indiana Council on Aging (CICOA), occurs once a month (barring bad weather) for about two hours, and there is no fee. Monthly themes vary, and the day I visited, the topic was games and toys that their parents, their children or they might have played with, dating back as far as 1900. I saw people living with dementia lighting up with joy as they held toys, played games, colored in coloring books and all engaged in a sing-along, much to the delight of their caregivers. Several told me they don't see their loved ones interact at that level at home. It was a relaxed yet appropriately stimulating setting.
Other popular themes have included a swing band concert, holiday celebrations and animals. “We went out to the Animal Encounters barn and guests got to meet some of our newest baby goats and lambs. We also talked about farming and agriculture,” said Kelsey Van Voorst, interpretation manager at Connor Prairie. “We have a lot of history to show off here, so it's a great way for individuals to tap into their senses to help recall memories.” Guests could see, feel, hear and, of course, smell the barn and the animals — a familiar scent that can stir memories. Refreshments also stimulated the sense of taste.
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 an old game of Chutes and Ladders. I couldn't tell for sure who had dementia at that table. They were all laughing and enjoying each others’ 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. The two women had already discussed getting the men together again soon. She brought her husband because she thought it would be good for him, but 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.
Indeed, Kleinhelter feels the same way. As J.P.'s main caregiver (she does receive some help from her adult children), she can feel isolated, too. “The Memory Café gives 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 is hard,” she said. “This feeds my soul.”
Amy Goyer is AARP's Family and Caregiving Expert and author of Juggling Life, Work and Caregiving. A recognized media authority, she has appeared on Today, The Doctors and Dr. Phil, and had interviews in The Wall Street Journal and People. Connect with Amy on Twitter, Facebook, Youtube, LinkedIn, amygoyer.com and in our Online Community.