Alzheimer's support -- in the mall
A groundbreaking way to help families dealing with big challenges
One new storefront in the Cape Cod Mall looks like the others, but nothing is for sale. What’s being offered instead is more valuable than anything money can buy:
The Alzheimer’s Family Support Center is opening a proactive, vanguard effort to engage hundreds of families facing the challenges of living with and loving someone trapped by a devastating illness.
The idea: Bring support right to where people can access it easily, creating a safe, professional space to drop off a loved one for a few hours. Then run errands, take care of business (and take a deep breath), returning refreshed to continue with life’s demands.
Molly Perdue’s initiative, doors opening at the end of the month, is a strategic grassroots extension of work she began in 2015, when she opened the umbrella of the Cape Cod Alzheimer’s Family Support Center. Her initiative emerged out of personal experience and understood need:
Molly’s mother came to live with her and family in 2001, “and it took a while to see what was going on,” Perdue remembers. Then a realization: The baby monitor they had purchased for a new son actually was needed for the grandmother.
Perdue was working on a PhD from Northeastern focusing on sports in context of law, policy, and women’s studies. The challenges of that, a new family, and caring for someone with Alzheimer’s were daunting.
“I was shocked there was no support for us, I couldn’t come to grips with it,” she recalls. The more she shared with academic colleagues, the more they urged her to pivot; her dissertation became an exploration of the idea of Alzheimer’s care, though it took until 2015 to make the implementing leap, six years after her mother passed.
Centered in Brewster, support groups were built across the Cape to engage families and caregivers, regular sessions in Falmouth, Provincetown, Orleans, phone and email contact. Most of us don’t realize the extent of the need, especially given our older population:
“There are 10,000 to 13,000 people on the Cape living with some stage of accelerated, cognitive loss,” says Perdue. “Usually that means there also are two to three caregivers in support of that person.”
COVID added another deep layer of challenges, forcing more online interaction, creating physical barriers because of fear of infection. Even so, the center continues to work with about 1000 people a month; a better way to put that is 1000 families.
“It can’t just be about the patient,” says Perdue. “Families need support. Without that, the unit doesn’t do so well.” There is now a data base of 13,000 people, 6200 emails.
The team numbers about 18, not all full-time, with expertise in everything from clinical issues to navigating the maze of insurance and referrals, emotional support, insights on physical needs or emotional stress. An early idea was to create a singing chorus, a gentle, therapeutic expression. But mostly it’s about training, understanding how dementia affects a loved one, how to avoid ugly physical confrontations as well as emotional injuries caused by anger, or memory loss.
All this is free, funded mainly by two annual walks and a year-end appeal to cover a half-million dollar annual budget. “From the start I was advised and realized we had to remove any financial barriers if this was going to work,” says Perdue.
Now comes Cape Cod Mall as a big next step. “It’s a respite program,” says Molly, and the more she thought about it, the more the location made sense:
“Everybody knows where the mall is. There’s public transportation, good parking, lighting, the environment inside is friendly in lots of ways.” Drop off a family member then do some nearby shopping, run errands, go to a doctor’s appointment – maybe just relax.
People register for a weekly two-and-a-half-hour slot, and need a cell phone to stay in touch. There is room for 10-12 clients at a time, staff with volunteers at a three-to-one ratio, two sessions per day every Monday, Wednesday, and Friday, with hope to expand into weekends. Programs and companionship might be supplemented with chaperoned exercise; walking around a mall is a great way to get the heart beating.
How is all this funded? Perdue’s wife Molly Braverman, a fine poet, used her skills to write a major grant administered through the US Department of Health and Human Services. Only 10 were awarded nationally. The Cape’s support approaches $1 million across three years.
“We haven’t done any advertising yet, and already we have 26 couples signed up,” says Perdue.
Does this look like a model that could be replicated across the country?
That’s a rhetorical question. The affirmative answer is obvious.
For more on the Alzheimer’s Family Support Center:
https://www.alzfamilysupport.org
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This is terrific!
Wow, thanks for the breaking news. What a boon for so many families and caregivers. This is wonderful.