"This is a social action movement," said Emily Farah-Miller, executive lead for ACT on Alzheimer's, a statewide effort in Minnesota to create dementia-friendly communities and disseminate best practices regarding dementia in health care settings.
More than 10,000 U.S. Dementia Friends come from Minnesota, which began recruiting residents for the program two years ago, before it became a national initiative.
This year, Minnesota ACT on Alzheimer's leaders are working with African-American, Hispanic, American Indian, West African and Hmong communities in their state to make culturally sensitive adaptations to their programs. And they're piloting a modified version of Dementia Friends in several elementary schools "to create a dementia-friendly generation of youth," Farah-Miller said.
Individuals can also earn a "Dementia Friends" designation by watching an introductory video on Dementia Friends' USA website, as well as a second video about dealing with people with dementia in various settings such as restaurants, stores, banks, libraries, pharmacies, faith communities and public transportation.
If you encounter someone who seems confused and disoriented on a bus, train, taxi or subway, try to understand what that person might need, one of these videos advises. Speak slowly, using short, simple sentences and give the person adequate time to respond. Remain calm and reassuring and avoid arguing or embarrassing the person who may have forgotten where they're going.
Bob Savage, an 86-year-old diagnosed two years ago with Alzheimer's disease, became a Dementia Friend last year and now speaks to groups in Connecticut who are promoting the program.
Some of what he tells them: "As soon as people learn you have Alzheimer's, you're stigmatized. People treat you different, like you don't understand, and that's very upsetting."
Even if memory is lost, intuition and emotional understanding remain intact, Savage explained.
What he and other people with dementia want most is "emotional connection -- that feeling of love that we had, that we may have lost" when a diagnosis was delivered and a sense of being a burden to other people descended.
In 2016, Savage moved to a campus in Southington, Conn., where 133 people with dementia reside in assisted living or a skilled nursing facility. Stephani Shivers, chief operating officer of LiveWell (formerly the Alzheimer's Resource Center), which owns the campus, is leading Connecticut's Dementia Friends initiative.
"What I've seen is that barriers seem to dissolve for people who attend" information sessions, she said. "Whether it's 'I'm not sure what to say to someone with dementia' or 'I'm nervous about being with someone with dementia,' the 'I don't know what to do' falls away.
"It becomes me relating to you, a person with dementia, as another human being -- a human being living with a cognitive disability, just like people living with physical disabilities."
KHN's coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation
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