Changing the way we look at dementia

In November, six people with Alzheimer’s disease and related types of cognitive impairment stood before an audience of 100 in North Haven, Conn.

One by one, they talked about what it was like to live with dementia in deeply personal terms.

Before the presentation, audience members were asked to write five words they associated with dementia. Afterward, they were asked to do the same, this time reflecting on what they’d learned.

“Without exception, the words people used had changed — from ‘hopeless’ to ‘hope,’ from ‘depressed’ to ‘courageous,’ from ‘empty’ to ‘fulfilled,’ ” said Erica DeFrancesco, a clinical assistant professor of occupational therapy at Quinnipiac University who helped organize the event.

The session, followed by an hour-long discussion about dementia, is part of a grass-roots movement in the U.S. aimed at educating people about Alzheimer’s disease and other forms of dementia, dispelling the painful stigma associated with these conditions and enhancing public understanding.

A centerpiece of that effort, known as “Dementia Friends,” began just over a year ago under the auspices of Dementia Friendly America, an effort spearheaded by 35 organizations nationwide.

Currently, more than 13,200 people are registered as Dementia Friends in the U.S., and organizations in 14 states (Arizona, California, Connecticut, Hawaii, Illinois, Indiana, Maryland, Massachusetts, Michigan, Minnesota, Ohio, North Carolina, Virginia, and Wyoming) are hosting events to sign up more. Globally, almost 14 million people in 33 countries are involved in the movement, which originated in Japan.

To become a Dementia Friend, people attend an hour-long presentation focused on several themes:

>> Disease vs. typical aging: Alzheimer’s disease and other types of dementia are illnesses of the brain, not a natural consequence of aging.

>> Scope of symptoms: Dementia triggers a wide array of symptoms, not just memory loss.

>> Quality of life: People with dementia can live well, often for years.

>> Maintaining identity and respect: People with dementia retain a sense of self and aren’t defined exclusively by this condition.

“If we can change the way people look at dementia and talk about it, we can make a big difference in people’s lives,” said Philippa Tree, who spearheads a well-established Dementia Friends program in England and Wales, with about 2.3 million members, that has licensed its model in the U.S.

“It’s about increasing awareness and empathy so that if you encounter someone in the community who needs some help, you have some basic skills,” said Meredith Hanley, project lead for Dementia Friends USA.

William Anderson, chief of police for St. Cloud, Minn., went to a session of this kind late last year, with about 40 members of his department. One exercise — writing down all the steps involved in making a peanut butter and jelly sandwich — made an especially strong impression.

“I’d never thought about everything that goes into something that simple: taking the peanut butter and jelly out of the cabinet, unscrewing the tops, getting a knife, spreading the sides of the bread, putting the pieces on top of each other, cutting it down the middle,” Anderson said, adding that this was only a partial list.

“The point they were making was that folks with dementia might remember some of these steps but not others. At some point, they’ll get distracted or forget what they were doing and go on to something else. To me, that was eye-opening; it explained a lot.”

Now, Anderson thinks about “how we can make life more manageable for these folks, in simple ways.”

Committing to a concrete action — visiting or phoning a family member with Alzheimer’s regularly, watching out for a neighbor, volunteering with a community organization or trying to make public venues easier to navigate, for instance — is required to become a Dementia Friend, though sponsors don’t check if people follow through.

If you encounter someone who seems confused and disoriented, try to understand what that person might need, a video on Dementia Friends’ USA website 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.

Savage explains to people that even if memory is lost, intuition and emotional understanding remain intact.

“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,” Savage said.