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Guest column

Building a dementia-friendly community

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As Montanans gather in town hall meetings this spring to develop the long-awaited official statewide Alzheimer’s disease plan, a new conversation is taking place about how we can transform our communities to embrace people living with dementia.

For decades the only dementia story we’ve heard is one of pity and even horror at the idea of losing your identity to this degenerative condition. Major Alzheimer’s interest groups and celebrities, such as Julianne Moore in her recent Oscar acceptance speech and prominent Alzheimer’s activist Seth Rogan, focus exclusively on the negative story in their appeals to raise money for the ever-elusive “cure.”

But at the community level there is a new conversation and a new dementia story emerging. This new conversation is taking place in Missoula and cities across America, in cafes, in living rooms, in museums and theaters. It’s a conversation among people living with dementia for people living with dementia who want you to know that they are still here.

The new dementia story is not about loss or despair. It is about creating dementia-friendly communities that celebrate the simple pleasures of life and the unique gifts that people living with dementia experience—living in the moment, unlocking creative potential, heightened enjoyment of food, music and emotional engagement.

Across the country, people living with dementia and advocates are creating opportunities to socialize and reconnect with their communities through Alzheimer’s Cafes, art and fitness classes, theater and museum outings. Care providers and researchers are discovering untapped benefits from music and arts therapy programs to awaken people considered lost to dementia.

“It is time we stop thinking of people with dementia only as victims of a terrible debilitating disease,” says renowned dementia care expert and author Dr. Allen Power, who visits Missoula June 3 to lead a daylong, statewide workshop aimed at improving care and reducing use of dangerous anti-psychotic drugs to treat dementia (www.harvesthomecare.net/event/dementia-beyond-drugs/).

Anti-psychotic drugs are known to dramatically increase mortality rates for people living with dementia and do little to improve their well-being. Eliminating anti-psychotics has been a national priority for decades, yet 17 percent of nursing home residents in Montana with dementia and an unknown number of people in the community are prescribed daily doses.

Power argues that we need to reframe our understanding of dementia as “a shift in the way a person experiences the world.” Educating people on a mass scale to understand this shift and “overcome the fear and stigma” of dementia is the key to creating dementia friendly communities, he said.

Missoula is embracing this shift with its first Alzheimer’s Café meeting June 25 at Wheat Montana. People living with dementia and their care partners are invited to stop by for a casual drink and treat, knowing that the staff and patrons will be welcoming and accepting.

Despite media hype, there is zero evidence that any drug can cure or even slow Alzheimer’s, but we have living proof that people can experience a full life with dementia. It is time for us to focus our resources and energy to improving care and creating dementia friendly communities.

We need to stop demonizing dementia because by doing so we demonize the people living with it.

We need to abolish the practice of “chemically restraining” people with powerful and dangerous anti-psychotic drugs to control so-called “behavior problems.”

We need to greatly expand opportunities for engagement in the community for people living with dementia.

Lets join the new conversation about improving the well-being of the 5 million people in America living with Alzheimer’s and other dementias, including more than 19,000 Montanans.

Working together, we can create dementia-friendly communities in Montana that provide the enrichment, support and care that will be needed for the millions of people who will be living with dementia in coming decades.

Kavan Peterson is president of Harvest Home Care, and co-founder and editor of ChangingAging.org, a blog on aging and ageism.
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