It’s no secret that people living with dementia and their care partners often experience frustration and social isolation. Clearly, the need for human connection remains powerful after a dementia diagnosis. So, when Reno-based Dementia Friendly Washoe County (DFWC) first asked its community what it needed to ease the challenges of dementia, peer support was high on the list. People living with dementia desperately wanted an outlet, a place to talk. In fact, they wanted to talk with others in the same situation instead of talking to aging services professionals. They knew where to find information about dementia; now, they craved friendship and camaraderie.
And so a year after the creation of DFWC, the volunteer-driven organization launched the Open Door Café in downtown Reno. Held monthly for 90 minutes, the “café” is actually a gathering place where people living with dementia and their care partners can talk about their experiences with dementia… or not.
“That’s what’s so powerful about the Open Door Café,” says Casey Acklin, who organizes the event as an AmeriCorps VISTA volunteer for DFWC. “That support and understanding is there, but if they don’t want to talk about dementia they don’t have to. It can be support or friendship. If they want to talk about swimming in the summer up at Lake Tahoe, they can do that.”
“It’s a place where I can feel normal and share experiences with others with similar conditions — and we can laugh at ourselves,” says Terri Bostick. “We can feel more normal and accepted. We don’t have to be as much on our guard about not repeating ourselves.”
The café concept is loosely based on “memory cafés” that originated in Chicago and that offered events and activities — a place to go for people living with dementia. In Reno, the Peer Support Action Team, a subcommittee of DFWC, considered the template set by memory cafés, which begins with planned activities for each gathering. But local attendees actually wanted something different, asking for more unstructured time. And so instead of a planned set of activities, the Open Door Café begins with what Acklin calls an “icebreaker” question to get people talking.
“What we’ve been trying to do with these icebreaker questions is make them simple but meaningful,” he says. Recent icebreaker topics included the importance of community, gratitude and simple pleasures. The icebreaker typically lasts for 15-20 minutes; after that conversations are more freeform.“Sometimes they continue on the theme of the icebreaker and sometimes they don’t,” says Acklin. After the icebreaker, smaller groups often form spontaneously.
Typically about 12 people attend the Open Door Café each month — light snacks are provided by a local restaurant — with four or five couples considered “regulars.” Organizers hope to double that participation in the coming year.
Acklin says while there are local support groups for care partners, the Open Door Café fills a desperate need for people living with dementia. “I like being able to connect with my friends,” says Linda St. Cyr. “Everyone shows up at the same time, which makes it easier.”
“They don’t say it directly, but it’s clear people feel like they’ve lost community or companionship in their lives,” says Acklin. “And over and over and over again participants say how much they appreciate having a real community to come to once a month.”
“The people there are so nice and kind and understanding,” says Bostick. “That makes us feel normal and accepted.”
Acklin asserts that the success of the program depends largely on the involvement of people living with dementia and their care partners. “The majority of the reason it’s so successful is that it’s been designed alongside people living with dementia,” says Acklin. “It’s not a formulaic implementation of an interventionist program. It’s a program by people living with dementia for people living with dementia and their care partners.”