BANGOR, Maine — The mood in the cozy gathering room at My Friend’s Place was cheerful on a recent rainy afternoon, as clients and volunteers enjoyed an after-lunch game of Bingo, modified to reflect the springlike theme of the day, tulips.
“T-12, U-26, L-33, I-60, P-75 … TULIP!” Mary Lawler, 91, of Bangor laughed as she read off the covered squares on her card. Her friends applauded as she selected a small, colorful stuffed animal as a prize, and the game went on.
My Friend’s Place, a nonprofit daytime activities program for people in the early stages of Alzheimer’s disease and other forms of memory loss, marks its 15th anniversary this year.
The program, housed at the First United Methodist Church in Bangor, grew out of the congregation’s commitment to supporting families caring for aging relatives at home, according to director Sylvia “Skippy” Valentine of Orono. Now, although it shares administrative support with the church, My Friend’s Place pays a small stipend for the space and has no programmatic ties with the religious mission there.
“People want to stay in their homes as long as possible, but caretaking families need a break to run errands and a chance to get away from each other,” Valentine said. My Friend’s Place provides that opportunity. “It’s not only respite for caregivers, but much-needed stimulation for people experiencing memory loss,” she said.
My Friend’s Place meets twice per week for four hours. The program is licensed to serve up to 12 clients; generally eight or 10 attend on any given day, along with a handful of volunteers. For $8 per hour, the state-licensed program provides a measured mix of upbeat social interaction, physical exercise indoors and out, craft projects, games, guided conversations and supervision, all aimed at maintaining physical strength, mental acuity and social skills as long as possible.
For low-income clients, some “scholarship” funding is available through the Eastern Area Agency on Aging, private donations and other sources. The program, which operates on an annual budget of about $40,000, also relies on an annual fundraiser and an allocation from the United Way of Eastern Maine.
“These people lose so many pieces of their independence,” Valentine said. “Our goal is to slow the process of their disease and help them tap into the skills they still have.”
A separate group, Memory Joggers, meets weekly with clients who are in the earliest stages of memory loss and provides them with mental puzzles and problems to solve, tactile learning exercises, homework and other activities aimed at strengthening their memory and cognitive function.
With three part-time paid staffers and a cadre of dedicated volunteers — many of retirement age or older themselves — Memory Joggers and My Friend’s Place have served hundreds of Bangor-area individuals and their families over the years.
For 77-year-old Florence Churchill and her husband, Dale, 79, the programs have been a huge help. Her husband’s dementia, first identified in 2010, has progressed to the point that she can’t leave him alone safely, afraid he’ll wander out the door of their Bangor apartment and disappear. He needs help with every task, from choosing his clothes to remembering to eat. A referral from the Eastern Area Agency on Aging brought them to My Friend’s Place in February 2015.
“I came with him the first day, thinking it would be hard for him to be left here with people he didn’t know,” Churchill said. “But by noon, he was so content and comfortable I just went back home.”
Now she brings him twice per week, one day for My Friend’s Place and one for Memory Joggers, and says he looks forward to it eagerly.
“It changes every week,” Churchill’s husband said, searching for words to articulate the experience. He said he enjoys the group interactions, the games and puzzles, the opportunity to go outside in good weather.
“The people are all great,” he said. “They do everything they can to help you.”
Churchill usually goes back home after dropping him off.
“I take a long shower and shampoo my hair,” she said. “Sometimes I do my nails. I call it my spa day.” The short breaks in their weekly routine help restore her equanimity.
“I am just now getting to the point where I don’t feel like I’m going over the edge,” she said.
Different models serve different levels of need
My Friend’s Place, with its group-oriented activities and a largely volunteer staff, operates under what’s known as the “social model” of adult day services, according to Anne Ossanna, director of the Maine Adult Day Services Association. Typically housed in a church or public space, these low-budget, grass-roots programs offer valuable support for clients with a high degree of independent ability who are nonetheless unsafe on their own.
Ossanna also is the site manager at Friendship Cottage, a free-standing “health model” adult day program located in Blue Hill. Unlike My Friend’s Place, Friendship Cottage, a program of the Washington Hancock Community Agency, is staffed by health care professionals including a registered nurse, a nursing assistant and a social worker. Each client has a customized care plan on file that identifies specific goals and activities appropriate to the client’s abilities and needs. In addition to meals and activities, clients are assisted with personal needs as needed, including eating, toileting and bathing.
Because Friendship Cottage provides more comprehensive care, is open six days per week for six hours per day, and provides transportation to and from clients’ homes, family members can often work at a full-time job, knowing their loved ones are safe and well-tended, Ossanna said.
The out-of-pocket charge is $14 per hour, although some clients are covered by Medicaid — called MaineCare in Maine — the Department of Veterans Affairs or other public programs.
In contrast to freestanding facilities such as Friendship Cottage, some adult day programs are housed within a nursing home, where shared professional staff, equipment and services offer operational efficiencies.
Frequently, these programs serve as an introduction to the residential facility, Ossanna said, as clients with Alzheimer’s disease or other forms of dementia become more debilitated and can no longer be cared for safely at home.
Community, compassion and practicality
Statewide, there are 26 adult day programs licensed and regulated by the Maine Department of Health and Human Services. The need for these programs will rise with the aging of the baby boom generation, according to Adam Lacher, director of communications and advocacy for the Maine chapter of the Alzheimer’s Association.
Lacher said 26,000 people in Maine currently are living with a diagnosis of Alzheimer’s disease, with the incidence expected to rise to about 35,000 by 2025, an increase of 35 percent. The incidence of Alzheimer’s and other forms of dementia are significantly under-reported, Lacher said, with fewer than half of all cases ever being diagnosed at all.
As communities across the state develop “aging in place” strategies for keeping seniors safe in their homes, Lacher said it is essential to factor in the needs of older residents with Alzheimer’s and other forms of dementia.
“These programs bring people together, build a sense of solidarity and show them they still have a place in their communities,” he said.
Home- and community-based care for Alzheimer’s disease is far less costly than residential care provided in a nursing facility, Lacher said, but family caregivers — there are an estimated 68,000 unpaid caregivers tending to loved ones with dementia in Maine — must be supported as the disease progresses.
Nationwide in 2016, total payments for health care, long-term care and hospice are expected to be $236 billion for Americans with Alzheimer’s and other dementias, with almost half of the costs borne by the taxpayer-funded Medicare program, according to the Alzheimer’s Association.
In Maine this year, the MaineCare program will spend $180 million on Alzheimer’s care.
Responding to a growing need
In Bangor, My Friend’s Place founder Barbara Fister of Hamden directs the Memory Joggers program.
“My parents both had dementia in the 1990s,” she said. “There were no services like this available. It was either keep them at home on your own or keep them in a nursing home.”
She’s grateful that awareness is growing of the profound challenge of caring for an aging parent, and of the societal value of keeping elders out of institutional care as long as possible.
As the baby boom generation ages, experts agree the need will grow for programs such as My Friend’s Place and Memory Joggers, providing early memory-loss clients with a boost of stimulation in a safe environment and family caregivers with a much-needed break.
Neither Fister nor Valentine is interested in expanding the reach of My Friend’s Place or Memory Joggers, saying the program is best suited to serving a small group. They are happy, however, to share their experience with others considering starting a program of their own. In addition, they have written a 235-page activities guide, “Field of Themes: 100 Theme Activities for our Senior Friends,” available free of charge to interested groups.
