For aging Americans, the fear of dementia now exceeds the fear of cancer.
This fact has been a spark for something new to the world of aging: dementia friendly communities.
Announced nationally at last year’s White House Conference on Aging, the Dementia Friendly America movement is gaining momentum as cities, counties, even states begin to explore ways to retool for the rising tide of older adults with Alzheimer’s disease and other forms of dementia.
What’s a dementia friendly community?
It’s a place where there’s improved detection and care for dementia. Where business owners train employees to recognize customers with dementia to offer special assistance. Where arts organizations infuse extra patience and compassion into programs targeting dementia. And where stressed family caregivers can easily access support groups and take much-needed breaks — respite care — from the exhausting round-the-clock task.
In other words, communities where dementia is understood, not feared.
Two California communities are the first statewide to grab the dementia friendly mantle. After then-mayor Gavin Newsom formed an expert panel in 2008, San Francisco developed far-reaching plans to improve dementia care. Just south, Santa Clara County is now launching its dementia friendly efforts.
“We’re starting to see real movement and commitment across the country,” she says.
Mastry compares the dementia friendly movement to efforts by the disability community to improve access.
“We all benefit from the curb cut and automatic door,” says Mastry. “And we’ll all benefit from dementia-friendly (communities).”
In San Francisco, the city’s 2020 Foresight: San Francisco’s Strategy for Excellence in Dementia Care includes a lengthy list of recommendations, some of which are being tested today.
After a van ride following adult day health care, peer escorts help return older adults home, taking them inside to assist this transition during a time of frequent confusion.
In another neighborhood pilot program, social workers cast a “support net” around dementia residents by enlisting friends, neighbors and heathcare workers to help vulnerable dementia residents with shopping, transportation and chores.
The city’s updated 2014 recommendations target its diverse population.
A top priority is enhancing public awareness that’s both culturally competent and linguistically appropriate. Next is addressing those who live alone, many of whom are in the LGBT community without children.
Other lofty goals include annual health screenings for cognitive decline, a mobile crisis unit for dementia issues like wandering, building a geriatric emergency room in the city, improved transportation options, and designating a physician “bridge” between health plans and the city.
“It’s in the early stages but there’s a lot of energy around (dementia friendliness),” says Melissa McGee, acting deputy director of the San Francisco Department of Aging and Adult Services.
Three years ago, with the support of the Alzheimer’s Association of Northern California and Northern Nevada, Santa Clara County began to consider the unique issues of dementia even before the term “dementia friendly” appeared on the radar.
Last month, Mastry visited the county for an official kickoff event in San Jose attended by leaders in health, politics, and art hoping to learn more about this growing trend.
Today, there are about 30,000 older adults with dementia in Santa Clara County, a number that is expected to double by 2050.
DFA builds on recommendations made by the World Health Organization for age-friendly cities. With these as a springboard, DFA targets eight “sectors” to collaborate with including law enforcement, government, healthcare, business and faith communities.
Besides Santa Clara County, other communities officially involved in DFA include the cities of Boston, Denver, Knoxville and Tempe; the Maryland counties of Prince George’s and Montgomery; and the states of Minnesota and West Virginia. (San Francisco is not yet officially participating in the DFA initiative.)
Internationally, the movement’s de factor leader is Scotland: “dementia friends” check in on those who live alone; banks acknowledge customers with dementia to fight financial elder abuse; and pets are paired with wandering dementia patients to help keep them at home.
In the United States, Minnesota has made the greatest inroads, with 34 established dementia friendly communities.
Emily Farrah-Miller co-heads Minnesota’s ACT on Alzheimer’s — the brainchild of Minnesota’s Collective Action Lab, which was founded by Mastry — and spearheads the state’s efforts. She says each community responds to the needs of its dementia residents differently, so Minnesota has seen a wide array of creative solutions.
There are now dementia friendly choirs, dementia friendly yoga classes and — most popular — “memory cafes” located at coffee shops, libraries or community centers.
What’s a memory cafe?
“Being able to go to a public place and be surrounded by people like you and socialize and visit and be educated about dementia,” says Farrah-Miller.
About one quarter of the 34 participating Minnesota communities have memory cafes.
Throughout Minnesota, mayors, county commissioners and other officials are joining local “action teams.” One community has even designated a city employee to be the liaison for all issues related to dementia. Faith communities are beginning to adopt the “dementia friends” concept for isolated seniors.
“The communities that had a newspaper reporter on their action team really moved forward because they were able to pass that information along to the public,” says Farrah-Miller.
As word spread, new groups asked to be involved, including teachers wanting to educate their students.
“As the momentum grew and awareness increased, these groups were just popping up,” says Farrah-Miller.
The other state officially signed on to DFA is West Virginia.
“We’re a small state and we have a great track record of collaborating,” says Helen Matheny, director of the Alzheimer’s Disease Outreach Programs at West Virginia University’s Blanchette Rockefeller Neurosciences Institute. She cites in particular the support of Gov. Earl Ray Tomblin and two U.S. Senators.
“Each of those individuals have experienced it in their own families,” says Matheny.
While West Virginia has yet to create its own unique dementia-friendly programs, it’s looking north to Minnesota for inspiration as Matheny knits together a network of groups committed to dementia friendliness spanning health, business, law, faith and law enforcement.
“‘Age-friendly’ doesn’t do it, ‘livable community’ doesn’t do it,” she says. “There’s something about dementia that brings people together. There’s fear and there’s compassion. It’s a powerful mix.”