Minnesota members of ‘club that nobody wants to join’ find support they need

The women smiled as a musician played tunes that dominated the airwaves decades ago, when they were younger and their memories were sharper.

In an adjoining room at the Plymouth Community Center, their relatives gathered for a break and the chance to chat with others who understand the trials of caring for someone with dementia.

Plymouth held its first “memory cafe” last month, joining a growing number of communities trying to boost programming as residents age and their needs change.

“A memory cafe is like this club that nobody wants to join, but it’s the best club to be in,” said Meghan Constantini, who runs senior programming for the city. “People find new purpose.”

Senior citizens make up a growing portion of Minnesota’s population. The Minnesota State Demographic Center predicts that by the year 2030, nearly 1 in 5 residents will be over 65.

Social workers expect that means more state residents and their loved ones will need support. As many as a third of older Americans experience some form of dementia, according to data from the Alzheimer’s Association, a nonprofit funding dementia research. Many of them receive help from family, friends or other unpaid caregivers.

But trying to figure out how to support someone with memory loss can be a confusing, isolating experience, according to people who have been through it.

“We always joke, somebody forgot to write a book about our possible journey,” said Gary Smith, who has been attending memory cafe events in Minnetonka with his wife, Shirley.

Memory cafes look a little different in each city. In Minnetonka and Plymouth, organizers host events that vary with the season. On cold days, they might stay inside and sing or dance. They might do an art project. On warm days, they might head outside for gardening classes.

The events often begin with a large group introduction. Then, caregivers have the option to break off into another room for info sessions and unofficial group therapy. Volunteers will supervise their loved ones, if they leave, or they can choose to stay.

Some cities’ events are covered by grants and are free to participants, while others charge a fee. Many are held through cities' recreation departments, some with help from nonprofits. Others are hosted by private organizations.

In Minnetonka, where nearly a quarter of residents are now 65 or older, the city has been hosting memory cafes for years.

“We estimated that, if you just do the statistics, there were going to be potentially 1,000 houses in Minnetonka that might have somebody with dementia in it,” said Richard King, a former senior advisory board member who helped start the events. “We felt that was important to start addressing some of those things.”

During the memory cafe sessions, King said, caregivers can get tips for scenarios they’ve never had to think about before, such as how to navigate a restaurant or board a plane with someone who is easily confused. He hopes the session will also provide a brief break for the caregivers, whose own health can suffer under the stress.

“We’re not trying to treat the problem,” King said. “We’re just trying to make their life better.”

The experience has helped Smith and his wife, Shirley, who was diagnosed with Alzheimer’s disease almost 11 years ago and is now entering the advanced stages. The memory cafe events are usually the highlight of her month. They give her a chance to spend time with other people without the pressure of having to remember everything.

“You’re just there to enjoy a moment, to refresh yourself and maybe do a fun thing that normally you wouldn’t be able to do,” Gary Smith said.

And he gets a reminder that “my journey is not alone.”

While some people had attended memory cafe events in other cities, the Plymouth organizers prepared for the possibility that many had not.

A pair of social workers introduced themselves to the caregivers and explained the group’s most important rule: What’s said in the room, stays in the room.

Next door, Paula Lammers, a teaching artist from the MacPhail Center for Music, distributed booklets with the lyrics to popular songs from the 1950s through 1970s: “Moon River,” “Up, Up & Away,” “Love Will Keep Us Together.”

Sometimes, the attendees sang. Sometimes they twirled scarves in the air. Sometimes they danced in their seats with shakers.

Be sure to move side to side, Lammers told them. “It’s therapeutic,” she said, adding that the movement can help organize the brain and improve alertness.

Joining in the fun was volunteer Carol Norling, who knows all too well the complex cycle of emotions that come with caring for someone with memory loss.

Her late husband, Lonnie, had Lewy body dementia. She’s grateful she had the chance to care for him but also remembers how difficult it was to watch his memories fade.

“You need a support system,” she said. “That’s where my heart is. I want to be able to reach out to other people — to the caregiver and the person who is actually going through it."

So, she sang. She twirled scarves. And when the woman next her couldn’t remember something, she reassured her: It’s OK.