Can a strong community network help ease the challenges faced by people with dementia and their families? That’s the hope of a national volunteer-driven initiative known as Dementia Friendly America (DFA), announced at the White House Conference on Aging in July.
“Our goals are to foster dementia-friendly communities that will enable people who are living with dementia and their care partners to thrive and to be independent as long as possible,” says Olivia Mastry, who’s guiding the effort. “The side benefit is that it’s beginning to normalize [Alzheimer’s], to reduce the stigma. It’s created an environment that’s allowed people to talk about this disease.”
Mastry comes to the issues from personal experience. She and her husband cared for her mother-in-law, who had dementia, the last four years of her life. “That’s given me deep context and understanding of what this takes,” she says, “The caregiver role is so big it can be made easier by an entire community coming together.”
A New Initiative
DFA next month will make live a web portal that offers communities a roadmap to create a dementia-friendly environment in many sectors of life, from churches to banks, government agencies and supermarkets.
“From a pure business perspective it makes a lot of sense for us to do this kind of work,” says Frank Fernandez of BlueCross/BlueShield Minnesota (BC/BS Minnesota), which insures many older adults. “Beyond that, the work aligns with our mission, which is to make a healthy difference in people’s lives.”
Reminiscing is a really good tool to help people with dementia feel safe emotionally and have more stable behaviors.
— Amanda Cavaleri
BC/BS Minnesota, one of 50 organizations on the DFA national council, is offering educational brown bag lunches to its employees and training its customer service representatives to better equip them to talk to people with dementia and their caregivers. It also contributed $750,000 to ACT on Alzheimer’s, a statewide initiative on which DFA is modeled.
Mastry adds that DFA will help communities find local funding to launch such efforts. But even without funding, she stresses, organizing can begin.
“If there is a champion in the community, you can do it,” she says. “Communities can really move this. So we’re trying to encourage them to take that first step.”
Here is a sampling of what communities around the country are doing to become dementia-friendly:
Rural Challenge: Identify Those Who Need Support
In 2014, Paynesville, Minn., population 2,400, launched an ambitious multi-pronged effort to reach out to an estimated 200 local people who have dementia. “The most difficult challenge we have is finding the people,” says Linda Musel, co-chair of Paynesville Area ACT on Alzheimer’s.
They began by surveying residents. “We went to every faction we could think of — bankers, lawyers, caretakers, government, teenagers — and we surveyed them,” says Musel. Some 90 people showed up at their first organizing event, a big turnout for a small town. The group decided to focus on educating the public and assisting caregivers.
They offer a class called “Dementia Friends,” which helps people overcome their fears and uncertainty about communicating with folks who have dementia. They also provide classes to emergency medical personnel and firefighters, who requested specialized training.
To reach young people, the group purchases relevant books for school libraries and teaches classes at the high school.
“We were surprised in our survey that the teens said, ‘That’s my grandma. Mom and Dad whisper about this, but they don’t tell us what’s going on.’ They want to help too,” Musel says.
Advocates also faithfully go to the town’s only supermarket on Wednesdays: senior discount day. They assist with shopping to relieve caregivers and pass out literature, including bookmarks with the 10 signs of Alzheimer’s, and let people know how to find support.
For their part, local ministers organized an Alzheimer’s Awareness Sunday. Caregivers often feel their loved one is not welcome at church, Musel says, and part of their educational effort is simply to remind people to smile and be welcoming.
Denver: Entrepreneurs Develop Technology for Connecting
One unusual dementia-friendly initiative is in Denver, Colo., led by Amanda Cavaleri, 27. Denver is one of DFA’s pilot communities, along with Tempe, Ariz.; Santa Clara County, Calif.; Prince George’s County, Md.; Knoxville, Tenn. and the state of West Virginia.
Cavaleri (see her TED Talk), whose expertise is new technology for older adults, has brought together key players who are interested in dementia-friendly efforts: Prime Health, made up of 1,000 health care administrators, physicians, entrepreneurs, investors, technologists and academics; the Colorado Technology Association; Catalyst, a digital health consortium; Jiminy Wicket, which promotes intergenerational croquet for people with dementia and Cavaleri’s nonprofit Connect the Ages, an intergenerational digital storytelling program.
“We wanted to see if there was interest from the entrepreneurial community and there was,” she says, including many who had family experience with dementia. “We chose to focus on the ‘extreme user’ — someone who is home alone, with dementia.”
Such individuals face many challenges, she explains — changes in depth perception, vision and cognition.
“We’re trying to figure out how we can help entrepreneurs so they can partner with home health organizations or communities,” says Cavaleri. “How can they receive funding and help them be successful and lower health care costs and improve quality of life?.”
Cavaleri works to create opportunities for elders, including those with dementia, to tell their stories. “Reminiscing is a really good tool to help people with dementia feel safe emotionally and have more stable behaviors,” she says.
Students meet face to face with people in retirement communities who have dementia, and capture their oral histories. Another pilot project that engages students is the Veterans History Project at the Library of Congress.
Cavaleri hopes DFA will eventually spark monthly coffee shop gatherings where caregivers, people with dementia and students can go to interact with each other, to participate in storytelling and reminiscing.
“We’re able to pass down these older adults’ knowledge and experience,” she says. “For both older and younger, it’s an avenue to systemically reducing isolation and building purpose — and hopefully attract some young talent for the longevity workforce.”
West Virginia – Statewide Pilot
Of DFA’s initial pilot programs, West Virginia is the only statewide initiative. “As I learned more about the work in Minnesota and the experiences with the medical community, it seemed like a natural fit for West Virginia,” says Helen Matheny, with the Blanchette Rockefeller Neurosciences Institute in Morgantown, who is leading the effort.
The initiative builds on partnerships already in place with AARP, the Alzheimer’s Association and other groups related to senior care and healthy lifestyles, she says. Phase one will be to raise awareness statewide and build capacity for doing dementia-friendly work in many sectors. In 2016, they hope to begin implementing programs in local communities.
“First we’re going to educate our citizens about the prevalence and the economic impact of dementia,” she says. “In addition we’re going to target four specific areas: faith communities, legal and financial services, businesses and emergency response personnel.”
They also will use social media to connect people with local resources.
“The idea is not to reinvent the wheel,” Matheny says. “We have a lot of resources readily available, so we want to be a convener and help facilitate getting residents to the right resources and tools that they need.”
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