When Marie gets confused while trying to pay for her groceries, the cashier looks at her suspiciously and gets impatient with Marie as others wait in the checkout line. Marie also no longer gets calls from the 3 friends who used to meet up with her for a monthly lunch date. And when she and her husband, Jim, go out for a neighborhood stroll, the people they run into direct their questions and comments to Jim, not Marie, making her feel invisible.
These are common scenarios encountered in the daily lives of people with Alzheimer’s and other forms of dementia. Others’ reactions typically stem not from a lack of kindness, but from fear and ignorance about dementia and how to relate to people who have it.
Counteracting that situation is the aim of the dementia-friendly community movement. In such a community, all sectors of the community are prepared and equipped to support people living with dementia and their care partners, explains Olivia Mastry of Dementia Friendly America (DFA).
In a dementia-friendly community, people with dementia “can leave their homes and feel confident they’ll be accepted and welcomed in the community,” Mastry says. “Unfortunately many of those with dementia shut the door and keep it a secret. But when you’re locked in your house, research shows your health spirals downward prematurely.”
The dementia-friendly movement relies on collaboration of diverse community partners. That’s why Mastry has no specific job title, a deliberate decision on the part of DFA’s founders. Rather than serving as “director” or some equivalent, Mastry’s role is to guide the collaboration, which involves LeadingAge, AARP, the Alzheimer’s Association and many other organizations.
“What I love about DFA is that the interest in becoming a dementia-friendly community can start with virtually anyone—a LeadingAge member, a local police department, the mayor’s office and so on,” says Katie Smith Sloan, president and CEO of LeadingAge and an ambassador for DFA in her role as a co-chair.
Sloan views LeadingAge members as natural advocates for dementia-friendly communities. “Many of our members are highly engaged in their broader communities already,” she says. “This is something tangible and forward-looking. It would be tremendous for our members to take a leadership position” in their communities.
One of Sloan’s fellow DFA co-chairs is Ron Grant, an Oklahoma City man who has Alzheimer’s. In the dementia-friendly cause, “one value we embrace,” Mastry says, “is that people living with dementia should help to shape this work. It’s not a ‘do for,’ it’s a ‘do-with.’ That’s a critical element.”
Dementia Friendly America was launched at the July 2015 White House Conference on Aging. The forerunner of DFA is ACT on Alzheimer's, a Minnesota initiative that began with “a handful of pilot communities,” says Emily Farah-Miller, program developer and project director at ACT on Alzheimer’s. “We were receiving a lot of national attention. Other states and organizations wanted to learn more about our work.”
Today ACT on Alzheimer’s participation has grown to 43 Minnesota communities of various sizes. “What we’ve seen,” Farah-Miller says, “is that as awareness of dementia is increasing, the stigma is decreasing.”
Community efforts are diverse and tailored to the community. These might include, for instance, educating local business employees or law enforcement officers in how to interact with people with dementia. It could be creating an arts program tailored to people losing cognitive function, or setting up a “memory café” where people can gather socially.
Along with raising awareness of what dementia is and how it affects people, there’s a growing effort to help caregivers. “We’re seeing more awareness of caregiver support programs,” Farah-Miller says, “and the creation of programs where none existed before.”
Now that DFA is taking this effort nationwide, one lesson from the Minnesota experience is that the key to success is to have an action team coordinator in the community, Farah-Miller points out. “You need someone to pull people together at the local level,” she says.
Minnesota has served as a model, with best-practice tools and resources to promote dementia-friendliness. Mastry says communities in 20 states now are active in DFA initiatives, with communities in 20 additional states preparing to sign on.
“Communities don’t have to start from scratch,” Mastry emphasizes.
Besides providing a toolkit and other resources, DFA is there to present workshops and webinars, answer questions, and provide a forum for communities to learn from each other’s successes and mistakes.
Puyallup, WA, a city of about 40,000 near Tacoma, was recently designated as an AARP/WHO Age-Friendly City. The designation, to be celebrated in a ceremony this month, is the result of a persistent 15-year effort by a group of volunteers dedicated to making the city a welcoming and supportive place for seniors.
In 2001, Puyallup was one of 10 U.S. cities to participate in the Robert Wood Johnson Foundation-funded AdvantAge Initiative. Once that effort ran its course, a core group of activists kept the idea of an age-friendly city alive through some lean years.
LeadingAge spoke with Linda Henry, immediate past president of the Puyallup Area Aging in Community Committee, and Dr. Charles Emlet, a professor of social work at the University of Washington-Tacoma, also a member of the committee. Emlet was a member of the original Puyallup AdvantAge community stakeholder’s committee.
LeadingAge: How would you describe your organization?
Linda Henry: We’re a virtual organization in the sense that our members are professionals or people who are more into volunteer work. We work on trying to raise awareness through communication efforts, the events we hold twice a year, including a volunteer fair (which came out of the post-grant effort to learn what people want in a city).
LeadingAge: What successes have you had over the years?
Linda Henry: There was a senior advisory board the city had that partially came out of the AdvantAge initiative, and one thing they recommended was the use of flags so drivers would be more aware of people in crosswalks. The whole objective was to allow people who are older or need more time to cross the street to be recognized so they have adequate time to get across.
The city has also supported the volunteer fair in particular every year. One thing we have started is to develop an age-friendly certification program for businesses. We have done focus groups on that, to look at how people are treated and what sort of access businesses have for older people. The focus groups identified what they considered the characteristics of an age-friendly business. Interestingly, customer service was most important, and senior discounts were least important.
LeadingAge: How did you first get involved in this effort?
Linda Henry: Professionally, my background includes writing, strategic development, marketing, communication and consulting, particularly in the areas of health care and aging. Following publication of my co-authored book, Transformational Eldercare from the Inside Out, I have focused on aging issues.
I was invited to join the Puyallup Area Aging in Community Committee just after the original grant ended.
Charles Emlet: I’m a social worker by discipline. I did gerontological social work for 20 years in California. Now I’m a professor at University of Washington-Tacoma, in my 17th year. A lot of my research focuses on vulnerable populations of older people. My work here started when Puyallup was beginning its involvement with the AdvantAge initiative.
I was involved in that task force for approximately 2 years. The funding dried up and went away, but it was a stalwart, stubborn group that didn’t want to quit. We had no sanction, but we just kept meeting, and over time we had a lot of organizational looks. We were technically a subcommittee of a city government committee for a while. Now we’re in the process of becoming a 501(c)(3).
LeadingAge: What are the benefits of an age-friendly city?
Charles Emlet: Aging in place means helping an older person remain in their home. Aging in community has more of a macro tint to it, and it’s about aging as part of a vibrant community. When I think about aging in place, having done easily 1,000 home visits to frail older people, it’s about the person struggling and being a recipient of care, suggesting a one-way street. What we are about is an exchange of value, where the older person values the community they’re in but the community [also] values the person. That’s the synergy we’re talking about; a sense of reciprocity and mutual value.
An older person not only needs things from their community but has things to offer. One of our board members, who goes back to the original AdvantAge committee, is close to 90, and he continues to volunteer to help kids improve reading and math skills. What a valuable member of the community in terms of exchange and reciprocity he is! So how do we together, on the national level and the city level, communicate a congruent message?
Linda Henry: I think that it is important that any caregiver who provides in-home care needs to be an advocate, not just someone who simply shows up and performs whatever care is needed. How can you be the advocate for services and opportunities for engagement outside of your professional life?
Charles Emlet: When I think about going into the homes of older people, a couple of things come to mind. We often mistake physical frailty for incompetence. That’s a dangerous place to go—that because someone is limited in mobility, or homebound because of the structure of the home, that somehow their competence and value as a human is diminished.
On the far end of that spectrum is someone who is homebound and [of] advanced age. We should not only see them as a valuable human being but try to discover if they can offer their community something. My gerontological practice was in the Bay Area of California, and we had a telephone reassurance program. A frail older person [who is] homebound is just as capable of making those phone calls as receiving them. We could ask, what could you contribute to your community? What volunteer opportunities are available to you even if you can’t leave home?
LeadingAge: You’ve worked with LeadingAge Washington as part of this effort. What has that involved?
Linda Henry: On a global basis the values and goals of LeadingAge are in alignment with values that I share personally and that I think are complimentary to the objectives of our organization. Ageism is so prevalent in our culture that I think it requires us to make every effort to create an environment where aging is not viewed as a time of diminishment. Even those who work in the area of aging often buy into that belief.
LeadingAge Washington has been remarkable partner with us because our goal is helping to educate people on aging issues. LeadingAge Washington has helped put us in touch with resources, and brought us our speaker last year [Roger Landry, M.D., president of Masterpiece Living]. I have spoken a number of times at their summer conference.
Wesley Homes is a LeadingAge member building a campus in Puyallup. It makes sense to have a representative on our board, and over the past 2-3 years as they have become involved in the first fundraising efforts in the community, they have partnered with us on several events.
Editor’s note: For more on the import of Puyallup’s recognition, see this article from The News Tribune, Tacoma, WA, written by Linda Henry.
People with dementia aren’t the sole beneficiaries of the dementia-friendly community movement. When individuals living with dementia can continue to be independent, their care partners can keep working, have a life of their own and get occasional respite from care duties.
The dementia-friendly attitude permeates into the community at large as well, Mastry contends. Think of it as being like the curb cuts and automatic doors installed to help people with physical difficulties. Those measures actually help everybody—for instance, the parent pushing a stroller or the person carrying heavy grocery bags.
“The dementia-friendly concept is kind of the ‘curb cut’ for people with cognitive disabilities,” Mastry says. “Improving relational skills and being more responsive to any need in the community help us all.”
One of the early pilot projects for ACT on Alzheimer’s in Minnesota was the St. Paul Neighborhoods ACT on Alzheimer's (SPN ACT), now in its fourth year. The convening organization for this project is Carondelet Village, part of Presbyterian Homes & Services.
Carondelet Village designated a staff member, Meghan Constantini, to serve as the SPN ACT team coordinator. More than 30 community partners now participate, including churches, libraries, a bank, local government officials, a high school and many more.
Part of Carondelet Village’s role is to provide education to raise awareness about dementia. It trains Dementia Champions, who in turn become educators out in the community. The Champions hold sessions for people who want to become Dementia Friends—that is, people in the community who learn about dementia and how to interact with people who have it.
These Friends then act on what they have learned in diverse ways. Perhaps they stand ready to assist a fellow store customer who seems confused and distressed. They may sign up to take regular walks with someone with dementia, or to be a home visitor or provide respite for a caregiver.
“Our hope in becoming dementia-friendly in St. Paul,” Constantini says, “is that this community is safe, informed and respectful of people with dementia.”
Another LeadingAge member at the forefront of the dementia-friendly community movement is Ecumen Detroit Lakes in Detroit Lakes, MN. “This is not an Ecumen-specific project; it’s a community project. Ecumen happened to take the lead,” says Sandy Lia, Ecumen’s fund development director.
Launching the community project involved 4 phases over 2 years: convening interested partners, conducting a community survey to determine needs, providing education and offering resources.
Actions taken to date have been varied, including speaking to high school students and local business employees; distributing hundreds of bookmarks listing signs of dementia and pointers on how to relate to people who have it; and a community showing and follow-up discussion of Glen Campbell: I’ll Be Me, the documentary about the singer’s journey into dementia.
Through such actions, “we can make life better for our entire community,” says Janet Green, executive director at Ecumen Detroit Lakes. “It helps all of us when we learn how to interact better with people who are having difficulties.”
Editor’s note: For more on the broader Age-Friendly Cities movement, see “Creating Age-Friendly Cities” from the May-June 2015 LeadingAge magazine.