What have Alzheimer’s patients and caregivers done during the pandemic?
In the five-plus years since it opened, the Alzheimer’s Family Support Center of Cape Cod has pursued its mission to provide free counseling, education, support groups and cultural offerings to people with dementia, their caregivers and families.
Then came the pandemic.
The health crisis shut down meeting spaces across the Cape for the support groups the organization operates, ending in-person contact with staff, and canceling gatherings for caregiver classes and art and music events for families. It also closed adult daycare programs operated by local councils on aging, leaving caregivers and their loved ones with dementia isolated in their homes.
But, instead of cutting back, the Center increased its efforts by growing its already substantial online presence.
The Center has been conducting Zoom counseling with its social workers since about 2016, according to Molly Perdue, MS, PhD, co-founder and executive director.
The need for the program is growing. Perdue estimated about 9,000 people on Cape Cod have Alzheimer’s or another form of dementia, though the numbers may be higher because those in the earliest stages may not yet be diagnosed.
Susan Carr, 81, of Brewster, said the Center’s programs have helped her and her husband Elliott, 82, who has Alzheimer’s disease.
She said she originally joined a support group Perdue led, and went through a six-hour training session called “The Savvy Caregiver.” Her husband also participated in some support groups for people with Alzheimer’s prior to the pandemic, and since then, both have been using Zoom to access Center programs.
“It’s just such a boon for the community,” Carr said, “especially on the Cape with such a large older population. I’ve benefitted from it so much.”
When the pandemic began last year, the 60 or so meetings the Center offers per month moved online, as did cultural programs, including Thanksgiving and winter holiday shows that were watched by more than 100 folks on Zoom.
“We do a free dementia training conference,” said Perdue. “We usually do it at Barnstable High School. We pack the place with 1,200 to 1,400 people. This (past) year we did it virtually and had 1,200 sign up.”
The Center will be able to expand its work during the pandemic with the help of a $30,000 Cape Cod Healthcare Community Benefits grant.
“The grant is about having everything online,” said Perdue. “There is a tremendous need to build those into robust services for people.”
“The 65 and older crew (with Alzheimer’s) is growing at a very, very high rate – we’re talking probably 10 percent starting to experience some kind of accelerated cognitive decline,” Perdue said.
“If we can get information out there about cognitive health, get them in the neurology office,” it may be possible to slow the course of disease, or, at least prepare the affected family to better deal with problems related to the disease’s progression, she added.
“We’re trying to get people connected, so they don’t remain alone and isolated until a crisis happens,” she said.
As an example, Perdue described a family with older parents who live on the Cape.
“A caregiver goes to a Bible study and gets COVID, and all of a sudden, the adult child has to drive to Cape Cod to take care of the person with Alzheimer’s while the caregiver is in the hospital,” she said. “We’re having a lot of these cases where we’re trying to help people problem-solve and create some contingency planning.”
The Center sends out a daily email to about 5,000 subscribers that includes not only the organization’s doings, but the latest state information on COVID, health articles and more.
“We’re trying to get information out, information from the Department of Public Health,” Perdue said.
The Family Center operates with minimal overhead costs. She, co-founder and Cultural Director Melanie Braverman, and the rest of the staff are independent contractors with no benefits. The Center’s office space in Brewster is donated.
“We want to make it robust. We want to continue to build it,” Perdue said. “And we know when the doors open back up, probably sometime in the fall, we want to keep the online work going. It will reach people who can’t get out; people with cognitive loss who can’t drive to the COA.”
For Carr and other families, the Center has been a godsend during difficult times, by helping people feel they are not alone in their situation.
“There’s a motto they have: Until there’s a cure, there’s community,” Carr said.