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Dementia awareness: Forum to gather community priorities for Alzheimer’s care, support

WILLMAR — When members of the Willmar-area ACT on Alzheimer’s coalition conducted a community survey this past year, they uncovered a significant need for more education about dementia, for caregivers and health care professionals as well as the general public.

They learned that the majority of local residents with Alzheimer’s disease and other types of age-related dementia are still living in their own home — and in many cases, living alone.

They learned there’s still some stigma attached to dementia and that family caregivers don’t always have adequate support.

They found that many families struggle with getting access to the right services at the right time.

Examining the survey findings and identifying a handful of community priorities to address will be the focus of a forum this coming week, hosted by the ACT on Alzheimer’s group.

The event, open to the public, will be offered twice on Wednesday: at noon and again at 4:30 p.m. at Vinje Lutheran Church.

Organizers hope to collect input that will help shape the agenda for making Willmar, and eventually all of Kandiyohi County, a dementia-capable community.

“We hope to learn not only what they see as the greatest need but also some suggestions for solutions,” said Andrea Carruthers, project coordinator.

With an estimated one in nine U.S. adults older than 65 who are living with Alzheimer’s disease, age-related dementia is a significant issue that often remains invisible, Carruthers said.

“To give people a forum to come and participate is going to show the community how people are already impacted by Alzheimer’s. I think it is a much greater issue than any of us can imagine,” she said.

It isn’t only caregivers and health care professionals who need to be prepared, coalition members said. It’s also the law enforcement officers who may encounter individuals with Alzheimer’s, the retail businesses whose customers have Alzheimer’s, and the employers with employees torn between caregiving for a family member with dementia and continuing to work.

“It does impact everyday life,” Carruthers said. “We have to build awareness of that.”

The ACT on Alzheimer’s coalition is one of more than a dozen pilot initiatives across the state that have been tasked with helping their community become dementia-capable.

The need is urgent, say Minnesota officials. About 5.2 million Americans are living with Alzheimer’s disease or other forms of age-related dementia. As baby boomers age, the number is expected to swell to as many as 16 million by 2050, accompanied by enormous financial and human costs.

Although Alzheimer’s is the sixth leading cause of death among older adults, effective treatment remains elusive. Current therapies can slow the progress of the disease in some people but cannot reverse it.

“The need will increase so we have to get smarter and better about this,” said Sharyl Helgeson, coordinator of the Atwater Area Living at Home Block Nurse Program and a member of the local ACT on Alzheimer’s coalition.

Coalition members conducted 50 to 60 focused interviews this past year to begin identifying some common themes. They talked to business owners, clergy, local government, transportation providers and more to obtain a diverse range of perspectives.

The interviews yielded a wealth of information that will be expanded with input from the two community forums.

One theme that emerged was what Helgeson described as “the fear factor” about Alzheimer’s.

“People don’t know what to do. The comfort isn’t there and the confidence isn’t there,” she said.

Screening can be a touchy subject, but when age-related dementia isn’t diagnosed early, families can lose opportunities to plan for the future and start therapies that may slow the progression of the disease, said Caryn McGeary, care improvement coordinator at Affiliated Community Medical Centers.

“Intervention is the best because you can have earlier success,” she said.

Organizers said the community forums will be the beginning of a process leading to a community that’s informed, safe and respectful of individuals with dementia and their families and provides care options that support their needs and promote quality of life.

“We have to think big picture because this isn’t going away soon,” Carruthers said.

Anne Polta

Anne Polta covers health care, business/economic development and general assignment. Her HealthBeat blog can be found at Follow her on Twitter at @AnnePolta.

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