Willmar cafe welcomes folks living with dementia

The first meeting of the new memory cafe in Willmar, Minn., started with more than two dozen people introducing themselves and their struggles with dementia.

It ended with a singalong.

Organizers of the Forget-Me-Knot Memory Cafe, launched in July, were "overwhelmed" by how many people attended the gathering, meant to give people with Alzheimer's disease and other forms of dementia a spot to socialize and find support.

"What it demonstrates is the great need in our area," said Renita Thonvold, a co-facilitator.

Such cafes were first founded in the state five or more years ago, and there are now a dozen in the Twin Cities metro, according to one count. But the memory cafe in Willmar might be the first in outstate Minnesota, where the need is great, data show.

"Rural living has been associated with an increased risk of Alzheimer's disease," according to a report by the Minnesota Department of Health.

Kathy Thonvold, Renita's sister-in-law and co-facilitator, said that while there are several groups for caregivers, the area lacked a gathering place for people with dementia.

"It really is to give voice to the people with the disease — to give them a place to connect with each other," she said. "I don't know of any other group around this area that is specifically for them."

The twice-monthly meetings were partly inspired by visits to Arthur's Memory Cafe, a group started in 2011 at a coffee shop in Roseville. Some memory cafes feature structured activities or speakers. Others do parties or outings, said Lori La Bey, founder of Alzheimer's Speaks and the Roseville group's founder.

"They're all different shapes, sizes and services," she said. The group that gathers at J. Arthur's Coffee Shop prefers less programming, La Bey added, and more "time to chitchat."

The group opened its meetings to Willmar advocates, who were struck by the open, frank conversations about loss, family and medical care, said Lori Petersen, chairwoman of the West Central Dementia Awareness Network.

"I was totally taken in by it," Petersen said. "I said, 'Oh my goodness, we definitely need to bring this back to our rural areas.'

"People need this."

With a grant from the Minnesota Board on Aging, the Willmar group scouted possible locations for their cafe and landed on an upstairs room at the Willmar Public Library. It's easily accessible yet private, said Janene Felt, project coordinator. The library provided a cart of books and resources about dementia and its care. Folks hung decorations that made the space feel more cafe-like.

Organizers had been worried that stigma might keep people away, but after a July open house, the first meeting attracted 27 people. A smaller group might be more conducive to good conversation. So members of the West Central Dementia Awareness Network will weigh whether to host two groups.

The first meeting attracted folks with "all different types of dementia," Kathy Thonvold said, and at different stages. It also brought people from beyond Willmar, including residents of Granite Falls, Renville and New London.

"I think those folks in the rural communities really need a place to connect with each other," she said. Her mother was diagnosed with Alzheimer's in 2006, "although we knew long before that."

Even living in Willmar, a city of about 20,000 people, Kathy's mother became disconnected. Her father always took her mom to groups and gatherings, she said, "but pretty soon the women didn't know how to talk to my mom anymore.

"She became kind of isolated," Kathy Thonvold said. "So that is what this is meant to prevent."

Jenna Ross • 612-673-7168