Turn your imagination loose for a moment.
Try to look beyond the fright, the stigma, and the isolation that can come with a diagnosis of cognitive impairment, and picture a place where people understand what you’re going through and throw their arms open to embrace you.
For Virginia Laken and a growing number of fellow Minnesotans, that is not some future dream. It’s the town they live in right now.
The Dementia Friendly Communities movement is sweeping through the Land of 10,000 Lakes and beyond. Given how quickly it’s catching on, it might even come to your city soon. Laken wouldn’t be surprised it if does.
“This program is happening through the U.S.; many towns are trying to become dementia friendly,” says the 72-year-old Laken, who was diagnosed with MCI two years ago and writes a blog about her memory loss.
“We need to be accepting and accommodating for people who have memory issues,” she says. “We need to make it so people don’t feel they have to hide their condition or be ashamed or embarrassed. That may sound idealistic, but I think it’s possible.”
It’s certainly proven to be possible in Winona, Minn., the town of 27,000 where Laken has lived for 30 years. Winona has been working to become more dementia friendly for almost two years now.
Last week, Laken helped move the cause forward by giving the keynote address as the town observed its first annual Dementia Friendly Community Week. I asked her how it made her feel to live in a place that offers such an outpouring of support for people with cognitive issues.
“The first word that comes to me is ‘pride.’ I’m so proud of this town,” she says. “Right along with that is compassion. I feel that this town is very compassionate. We’re small enough that we understand if one part of our society is not functioning well, our town doesn’t function well.”
It’s a civic attitude that’s become widespread in her state. The effort to encourage communities to be more dementia friendly is being coordinated by an organization called ACT on Alzheimer’s, which offers a tool kit to help towns get started. So far, nearly 50 communities in Minnesota have joined the movement. (See map below.)
In Winona, it’s estimated that about 1,000 residents are living with some form of dementia, and community leaders knew that number will only grow as the population continues to age. So the local senior center, called the Friendship Center, joined with others to help form the Winona ACT on Alzheimer’s Action Team and begin moving the city toward a more dementia friendly orientation.
Malia Fox, director of the center, says the idea had been floating around for a while, but it took the right leadership to help get it launched. As she recounts the story, when Steve Sarvi arrived as the new city manager, he asked, “Are we a dementia friendly community?” When she told him, not yet, his answer was, “Well, we’re going to change that.” That was all the impetus the town needed.
“People with memory loss were not being supported; they were holed up in their home and not coming out because of fear and stigma,” Fox says. “We’ve jumped on board with things like a dementia friendly chorus and memory cafes every week.”
So far, more than 500 people have attended community information sessions, and in addition to the recent Dementia Friendly Community Week, another new initiative is a dementia friendly garden. Among Fox’ goals for the near future are getting local schools and churches more involved in the effort.
When I spoke to Virginia Laken, it was the day after she gave her keynote address. She talked about her own diagnosis of mild cognitive impairment, which came after her family sat her down shortly before her 70th birthday to talk about things they were seeing. She was forgetting words, missing appointments. They were concerned.
“Initially, I resented that,” she says. “I was angry with them. I was embarrassed and defensive.”
But she knew something wasn’t right. “There are times when I feel there’s a small black hole in my head,” she says. One time, she looked at her dog Tipsy, and not only couldn’t remember her pet’s name, but couldn’t identify what kind of animal it was.
And then there was the time a friend visited for the Shakespeare festival hosted at the local university. Laken tried to drive to the festival and couldn’t remember how to get there. “This is a small town, and I’ve live here 30 years,” she says.
One thing that helped Laken come to terms with her problems and agree to go to the Mayo Clinic for an evaluation and diagnosis was the approach her husband and children took at that family discussion.
“Before the meeting was over,” she says, “my family moved in close and held my hand and said, ‘Mom, we’re part of your team and we want to be with you on this journey.”
Now, thanks to the Dementia Friendly movement, she knows her community is with her on the journey as well. And that means everything to her.
Laken told me a story about something that happened during the question and answer session following her keynote address. A woman who recently moved to Winona got up and said, “I appreciate your family and the support they’re giving, but I’m by myself and I’m new to town, and I don’t know what would happen to me.”
Laken says: “I told her, you know Diane, that’s what we want to get to in Winona, that if you are walking down the street and having trouble finding something, you could walk up to someone and tell them, ‘I‘m having problems with memory and can you help me get where I’m trying to go?’”
Someday, that might be more common in all of our communities. If you are interested in learning more about Dementia Friendly Communities, or looking for information on how your town might become one, Fox suggests you begin by contacting the Alzheimer’s organization in your state. You also can check out the tool kit being offered by ACT on Alzheimer’s by visiting their website by clicking here.
And even if you don’t seek it out, don’t worry. Given how this movement is spreading, it’s likely to find your town anyway. And Laken thinks that’s a very good thing. Here’s how she summed it up for me:
“Silence doesn’t serve us well,” she told me. “It’s only when we share our stories that we not only learn from each other, but we realize we’re not alone. I think that’s the worst thing, when you think, ‘No one understands how I feel, no one is going through the same thing.’ When we start sharing our stories, we find other people feel the same way and we’re not alone. That’s what this dementia friendly is all about. So I don’t have to be embarrassed when I can’t find the right change at the grocery store — that I have trust people will help me, and won’t judge me.”