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Destigmatizing Alzheimer's through Community Engagement

Ami Noss
By Ami NossAugust 31, 2016

Transforming the story of dementia from one of despair to one of courage and purpose, Momentia Seattle leverages activities to create “dementia-capable” communities.

Learn more about destigmatizing Alzheimer’s through community engagement.

Gathering the Alzheimer’s Community Together

It’s 2:30 p.m. on a Tuesday afternoon, and at Peet’s Coffee in Seattle’s Greenlake neighborhood, half the restaurant quickly transforms. Chairs and tables are pushed into a circle, and within the next few minutes, about 20 people arrive. They greet friends, order coffee, and then, for the next couple of hours… do more of the same.

This is an Alzheimer’s Cafe, a gathering for people living with dementia, but it could be any other lively meet-up among people with shared interests. Outside of a few songs sung at the end of the two hours, there’s no real agenda, and that’s the point — to have an unremarkable afternoon at the coffee shop.

Except, given that most of this group’s participants come from the nearby Hearthstone Retirement Community, this unremarkable event is somewhat remarkable.

“For most of our residents, the bulk of daily life happens on campus,” says Katie Newman, organizer and host of this monthly event. “Meals, activities, various therapies — people can do it all without ever leaving. The cafe gives our memory-care patients a chance to get out into the community, and that’s really important.”

Rewriting the Story of Dementia

First organized in the Netherlands in 1997 and brought to the U.S. in 2008, Alzheimer’s Cafes are part of a larger movement to destigmatize dementia and provide the people, families and caregivers who live with dementia opportunities to socialize, draw support from one another, and, in the words of Alzheimer’s Cafe founder, Dr. Bere Miesen, “just be.”

The advocacy group Momentia summarizes the movement as a collective effort to rewrite the story of dementia, replacing the old narrative of “fear, isolation, despair, futility and loss” with one of “hope, connection, growth, purpose and courage.” The new story encourages those diagnosed with Alzheimer’s, especially those in the early stages of memory loss, to focus on their strengths, and on things they can do and enjoy, rather than on areas where they may be experiencing diminishing capabilities.

At the same time, the group encourages local organizations to offer “dementia-friendly experiences” by destigmatizing Alzheimer’s through community engagement.

Programs for Those with Memory Loss

Community activities and programs listed on Momentia’s current Seattle community calendar include events as diverse as a weekly “Memory Loss Zoo Walk,” a “Dementia-Friendly Drumming Circle” and a gardening session at the Ronald McDonald House.

More traditional meetings include several support groups, where participants can discuss and develop coping strategies for any issues they might be experiencing, and Greenwood Senior Center’s “Gathering Place,” which provides an afternoon of physically and mentally stimulating activities lead by MSW students.

Some of these activities are sponsored and hosted by organizations like the Alzheimer’s Association and Seattle Parks and Recreation, while others are arranged by retirement communities, small businesses or other organizations. Some require pre-registration, but most are open to the public.

Success Stories

Momentia’s website is full of stories of people who’ve found strength and hope through regular participation in various community events post-diagnosis, from Roger, who’s found deeper connections both with those who have more advanced dementia than his as well as with his own wife, to Myriam, who left her law practice to become an advocate for the Alzheimer’s Association.

For her part, Newman says that she’s been surprised at how quickly the word has spread about the Alzheimer’s Cafe she hosts, and that new faces show up on a regular basis. She says she’s also been surprised to see coffee-shop patrons occasionally participate in the group’s activities.

“Sometimes when we sing our songs at the end of the meeting, people outside our circle will join in,” she says. “It’s fun to see people around us spontaneously start clapping and singing.”

What activities have you participated in that are creating connections for families and people living with dementia? Share how you are destigmatizing Alzheimer’s in the comments below.

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Ami Noss

Ami Noss

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