Dementia is the fifth leading cause of death and debilitation for people over 65 across the nation. Martha’s Vineyard is particularly susceptible to this statistic, being geographically isolated with a rapidly aging population. Trained professionals, access to services, and community engagement are all crucial components to supporting dementia-vulnerable demographics. In October 2016, UMass Medical student Maegan Pollard was tasked with the question: Is the Island doing enough?
Pollard was a Rural Health Scholar at the time — one of the 12 individuals chosen from UMass Medical to conduct research in partnership with the Dukes County Health Council. She was on a team reviewing substance abuse disorders on-Island. After a final project presentation at the West Tisbury library, Leslie Clapp, CEO of Martha’s Vineyard Center for Living, approached Pollard and asked if she’d conduct a similar project, but with dementia services at the center of research. Funding from Martha’s Vineyard Hospital and the Health Resources and Services Administration sealed the deal.
Since then, Pollard has been on and off-Island researching dementia services on Martha’s Vineyard. She interviewed 30 stakeholders invested in dementia care, including nurses, physicians, caregivers, community program administrators, local government, law enforcement, healthcare employees, and hospital administrators. She spent about an hour with each stakeholder, asking questions like: What is the state of dementia care on-Island? What are the resources? What are the gaps? How should this be addressed?
She started by examining the services that are available.
“There’s a lot on the Island,” Pollard told The Times. “It’s just a matter of getting the word out.”
Some utilized services include Meals on Wheels, which delivers meals to the homes of people 60 and over; CORE by Martha’s Vineyard Community Services, which offers counseling, outreach, and referral for the elderly; Featherstone’s Memory Support Group, a weekly group serving those with memory problems; Frail Elder Waiver, a Massachusetts Medicaid-operated program that provides nursing-home-level care at patients’ homes; the Music and Memory Cafe offered weekly by the M.V. Center for Living; Windemere in-patient services; Healthy Aging Martha’s Vineyard, which advocates for the elderly community at large; Councils on Aging, senior services offered within each Island town; Horizons Geriatric Care Management in Vineyard Haven, which provides private home care; Hospice MV, which also provides private care at home.
Despite this list, Pollard still found gaps.
“One thing that came up a lot was the lack of home care available on-Island,” Pollard said. “Even if someone were to get reimbursement through the Frail Elder Waiver, they’re still having trouble with vendors because there aren’t enough certified nurses assistants (CNAs) to cover hours.”
Another problem that came up with family caregivers was how to keep loved ones at home without staying and taking care of them 24-7. Another problem was community stigma.
“People don’t know how to react when someone in the community develops dementia,” Pollard said. “It becomes difficult for that individual to interface in their regular community locations without needing supervision.”
“And then loneliness,” she said. “If you’re well enough to stay at home and not be at Windemere, your choices are either go to the Center for Living, or stay home. People get isolated. Especially those who say, ‘You’ll never catch me at a senior center.’”
In the end, Pollard came up with five themes that could offer dementia patients more support: Medical care providers, caregivers, facilities and space, community engagement, elder engagement, and professional programs. Within these five themes, there are 26 discrete problems. Pollard made a table of how those problems have been addressed in the past, and whether it’s a feasible solution on Martha’s Vineyard.
“Finding demand to build a skilled nursing facility would be nice, but it’s not feasible with the land crisis and housing demand on the Vineyard,” Pollard said. “Finding out where people with dementia are in the community and doing more home outreach — that’s more feasible.”
Increasing home outreach would be a two-pronged approach.
“The first is community engagement,” Pollard said, “making Martha’s Vineyard a more dementia-friendly community.”
This initiative would bring trained clinicians and community workers into banks, barber shops, and grocery stores to give a presentation to workers.
“A basic ‘What to do when you encounter someone with dementia, and where to direct them,’” Pollard said.
According to Pollard, Healthy Aging M.V. and the Councils on Aging have already started writing the presentation. Once that’s finished, they’ll figure out who will go into the community to make presentations.
“My suggestion was medical students, nursing students, or outreach volunteers,” Pollard said.
The second prong of this approach would be finding out where people with dementia are living, and offering them cognitive training.
“You don’t need to be a doctor to do that,” Pollard said. “Taking some of those activities that are a hit at the Center for Living, like chair yoga, memory games, crafts, and bringing them to people’s homes.”
Another suggestion is partnering with Lila Fischer, a public health nurses on-Island. “She was hired about eight months ago, and she’s been doing great stuff in the community,” Pollard said. “Partnering with her and having dementia clinics where people could come in to get dementia screenings. Medical students and outreach students could also be there to do cognitive training and hook people into services available.”
The biggest advice Pollard gave the community is collaboration. “Getting organizations with similar missions to operate together,” Pollard said. “This comes up in every public health project. Towns are doing similar things, and maybe competing sometimes to try to determine who’s leading the initiative versus who’s supporting it. A lot of people are doing really good work, but it’s a matter of getting them to collaborate a little better.”
Pollard will graduate from UMass Medical in June 2019. She’s been working with fellow medical students and nursing students, who will continue the work after she graduates.
“They’ll work with the populations I didn’t cover,” Pollard said. “Like the Wampanoag tribe, the Brazilian community, and more caregivers.”
I asked if she’d considered interviewing dementia patients themselves. “One thing about working with a vulnerable population is you need your project to be reviewed by an ethics review board,” Pollard said. “Because we’re not working with patients themselves, the project didn’t have to go through that board. If we wanted to, we could.”
Pollard commented on her experience working with Dr. Charles Silberstein in the geropsych unit at Windemere over the summer.
“I was able to see a population of 40 people living there. I saw their day-to-day lives and chatted with them for my medical interviews. I got a sense for how they’re feeling and what they want. It was unofficial, but part of my own enrichment as a future doctor.”
By 2030, Martha’s Vineyard could see as many as 1,000 new dementia patients, according to a 2013 unpublished study by the UMass Medical School Rural Scholars and the Donahue Institute. That’s about 6 percent of year-round Islanders.
“It’s noteworthy that this number could be twice as large, because less than half of individuals who meet diagnostic criteria are actually diagnosed by a physician,” Pollard said.
Now that the research is out there, Island groups like the Martha’s Vineyard Center for Living are taking the first steps in addressing the state of dementia head-on.
“It’s going to become more and more relevant and important for us as a community,” Pollard said.
To see Maegan Pollard’s full research report, co-authored by Nancy Langman and Leslie Clapp, click here.