In November, six people with Alzheimer鈥檚 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 down five words they associated with dementia. Afterward, they were asked to do the same, this time reflecting on what they鈥檇 learned.
鈥淲ithout exception, the words people used had changed 鈥� from 鈥榟opeless鈥� to 鈥榟ope,鈥� from 鈥榙epressed鈥� to 鈥榗ourageous,鈥� from 鈥榚mpty鈥� to 鈥榝ulfilled,鈥欌�� 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 new grass-roots movement in the U.S. aimed at educating people about Alzheimer鈥檚 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 鈥�,鈥� began just over a year ago under the auspices of Dementia Friendly America, an effort spearheaded by 35 organizations across the country.
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, Wyoming) are hosting events to sign up more.
Globally, almost 14 million people in 33 countries are involved in the movement, which .
To become a Dementia Friend, most people attend an hour-long presentation focused on several themes:
Disease vs. typical aging. Alzheimer鈥檚 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鈥檛 defined exclusively by this condition. (Testimonials by people with dementia are sometimes, but not always, included.)
鈥淚f we can change the way people look at dementia and talk about it, we can make a big difference in people鈥檚 lives,鈥� said Philippa Tree, who spearheads a well-established , with about 2.3 million members, that has licensed its model to the U.S.
鈥淚t鈥檚 about increasing awareness and empathy so that if you encounter someone in the community who needs some help, you have some basic skills,鈥� 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 鈥� writing down all the steps involved in making a peanut butter and jelly sandwich 鈥� made an especially strong impression.
鈥淚鈥檇 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,鈥� Anderson said, adding that this was only a partial list.
鈥淭he point they were making was that folks with dementia might remember some of these steps but not others. At some point, they鈥檒l get distracted or forget what they were doing and go on to something else. To me, that was eye-opening; it explained a lot.鈥�
Now, Anderson thinks about 鈥渉ow we can make life more manageable for these folks, in simple ways.鈥� An example: The St. Cloud Police Department鈥檚 building has a large vestibule, with two big glass doors. 鈥淚f you have dementia, you鈥檙e going to walk into that vestibule and probably turn around in circles because the doors don鈥檛 have an identifier saying 鈥榩olice,鈥欌�� he said, adding that introducing new signage is under consideration.
Committing to a concrete action 鈥� visiting or phoning a family member with Alzheimer鈥檚 regularly, watching out for a neighbor, volunteering with a community organization or trying to make public venues easier to navigate, for instance 鈥� is required to become a Dementia Friend, though sponsors don鈥檛 check if people follow through.
鈥淭his is a social action movement,鈥� said Emily Farah-Miller, executive lead for ACT on Alzheimer鈥檚, 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鈥檚 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鈥檙e piloting a modified version of Dementia Friends in several elementary schools 鈥渢o create a dementia-friendly generation of youth,鈥� Farah-Miller said.
Individuals can also earn a 鈥淒ementia Friends鈥� designation by watching an , 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鈥檙e going.
Bob Savage, an 86-year-old diagnosed two years ago with Alzheimer鈥檚 disease, became a Dementia Friend last year and now speaks to groups in Connecticut that are promoting the program.
Some of what he tells them: 鈥淎s soon as people learn you have Alzheimer鈥檚, you鈥檙e stigmatized. People treat you different, like you don鈥檛 understand, and that鈥檚 very upsetting.鈥�
Even if memory is lost, intuition and emotional understanding remain intact, Savage explained.
What he and other people with dementia want most is 鈥渆motional connection 鈥� that feeling of love that we had, that we may have lost鈥� 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 (formerly the Alzheimer鈥檚 Resource Center), which owns the campus, is leading Connecticut鈥檚 Dementia Friends initiative.
鈥淲hat I鈥檝e seen is that barriers seem to dissolve for people who attend鈥� information sessions, she said. 鈥淲hether it鈥檚 鈥業鈥檓 not sure what to say to someone with dementia鈥� or 鈥業鈥檓 nervous about being with someone with dementia,鈥� the 鈥業 don鈥檛 know what to do鈥� falls away.
鈥淚t becomes me relating to you, a person with dementia, as another human being 鈥� a human being living with a cognitive disability, just like people living with physical disabilities.鈥�
Come join us on Feb. 13 from 12:30 to 2 p.m. ET for a live discussion about improving care and services for people with dementia and supporting caregivers. .听
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