‘We’re Alz in this together’: Meeting brings together those isolated by Alzheimer’s
MIDDLEBURY — Vermont, as the third-oldest state in the country, is plagued by Alzheimer’s disease. More than 13,000 Vermonters over the age of 65 are living with this form of dementia — a figure that is expected to increase 30% in the next three years, according to the Alzheimer’s Association.
“My experience is every single time I go out in public and ask people ‘Do you know anybody? Have you experienced this anywhere in your life? So many hands go up,’” Meg Polyte, policy director of the Vermont chapter of the Alzheimer’s Association, said at a meeting in Middlebury last week.
Sure enough, the room far overflowed the initial plan of 25 people, with people from all over, and all sorts of experiences sitting, standing on the side.
The meeting, organized by the Alzheimer’s Association, was called “We’re Alz in this together, Destigmatizing dementia in Vermont.” Caretakers, those with Alzheimer’s disease or other dementias, policymakers and members of the public gathered on Thursday, June 30, at the Congregational Church of Middlebury to discuss how Addison County currently supports those with Alzheimer’s and how it can improve.
The high rate of Alzheimer’s is accompanied by a workforce shortage, which results in people not being able to get services that would help them, according to Polyte. There is already a waitlist of almost a year to get a diagnosis through UVM Medical Center. Without a diagnosis, a person can’t apply for disability funding from the government or get access to necessary services.
A TRUE LIFE STORY
Pamela Smith, one of the speakers at the event, is no stranger to such hurdles in getting care for dementia. Starting a few years ago when she was only 50 years old, the Middlebury woman was telling her doctor during her regular visits every three months about problems she was experiencing with her memory. She received a wide range of explanations — from menopause to her chronic pain condition, and was diagnosed with anxiety and depression, neither of which she had ever experienced.
One day at work, she was writing something that usually took her 10 or 15 minutes.
“I thought I had been spending about an hour at it, which I was really frustrated about. And I looked up at the clock and it had been four hours and I called my doctor’s office in tears. My hands are shaking, and it’s like, I don’t know what’s going on.”
From there, she spent about eight months being sent from specialist to specialist, until eventually she was diagnosed with early onset Alzheimer’s.
“And by that point it was a relief, weirdly, because it had been years of me saying, ‘No, something’s wrong,’” she said.
But even after getting diagnosed, Smith had trouble accessing services, a common problem for those recently diagnosed, according to Sen. Ruth Hardy, D-Addison County. It was especially difficult for Smith given her younger age, as services for older people, such as Age Well would not serve her, she said.
Many of these funding and accessibility problems are caused by a low level of visibility of the population.
“Because this is a very unseen population, and older people in general are very unseen on the political landscape, it means they’re less likely to get services and support created for them,” Polyte said. “The need doesn’t seem as high because they’re not just out there in people’s faces as much.”
The Alzheimer’s Association, which advocates for other forms of dementia as well, hosted the meeting as the kickoff to series of gatherings in different counties around Vermont. The goal of the meetings is to increase awareness and hear from people firsthand what they want — whether it be an expansion of resources or an increase in accessibility to existing programs, according to Polyte.
The central questions guiding the meeting were: What is it like to be diagnosed with and live with Alzheimer’s or another dementia? What is it like to care for someone with dementia? What services are available in Vermont and in your community, and what services are needed? How can you get involved with the fight to end Alzheimer’s and all other dementias? She then hopes to transfer what she hears to her work with policymakers around the issue.
In addition to Sen. Hardy, Middlebury’s two Democratic state representatives, Robin Schue and Amy Sheldon, attended the event.
Hardy, who is a neighbor of Smith, spoke about the bill that she sponsored and was passed this year, S. 206, now called Act 113. It added to the Older Vermonters Act from 2020, which required a state plan on older Vermonters.
The bill updated the membership and charge of the commission on Alzheimer’s, which has been in place since 1991. It added a member from the hospital community, and ensured that anyone appointed to it had direct, lived experience with Alzheimer’s in some way — whether it be through having it, caring for someone who did or doing research.
The bill also includes training for people working with people with Alzheimer’s in order to ensure that healthcare providers better understand how to interact with those with the disease.
There is also a silver alert system, which Hardy compared to the Amber Alert system for someone with Alzheimer’s who may have gotten confused and lost.
‘FELT LIKE AN ISLAND’
One important issue, according to Hardy, is transitions between different types of care, and how they are planned for and overseen. Smith, for instance, is cared for by her daughter Eryn.
Family members serving as unpaid caregivers is a common occurrence when it comes to Alzheimer’s. Vermont has 26,000 of these caregivers, which makes up 37 million hours of unpaid care, valued at a grand total of $758 million, according to the Alzheimer’s Association. Workforce shortages contribute to the blockages in the system, said Polyte.
Rob Backlund spoke about his and his father’s experience caring for his mother, who was diagnosed with early onset Alzheimer’s at 58, and died 10 years later, in Sepember 2020.
“As a family, we felt like an island,” he said.
Backlund encouraged caretakers to accept the grief of losing someone, and even ask for help as they slowly make their way through the process. He related to Smith’s discussion of the isolation of the disease.
Smith said that what helped her most was when she discovered a support group based in Massachusetts.
Elise Blair of Middlebury shared that her current caregiver support group run through the church is full, but she is looking to start a new one. Those interested can contact her at 802-388-4540. Project Independence and Elderly Services also has caregiver support groups and individualized elderly therapy, according to social worker Eileen Lawson.
Addison County Home Health and Hospice also offers a wide-range of services for those with Alzheimer’s and other dementias as well as their caregivers, including small tasks like laundry and help with medicine in order to help people stay at home longer, said Deborah Wesley, the organization’s chief executive officer.
Hardy also emphasized the importance of personal stories in enacting change. Smith and her daughter testified twice at the Vermont statehouse, went to D.C. to talk to the federal delegation and have done several media interviews. Polyte hopes to build more advocates through events like this one.
A SERIES OF LOSSES
Although Smith supports the goal of working toward a cure for Alzheimer’s, she knows it will not happen in her lifetime. She hopes, instead for more discussion around the disease, and actions that can be taken to make living with it easier.
Smith described Alzheimer’s as a series of losses. She stopped working, can’t follow the plots of books and television, doesn’t cook alone and is phasing out of driving.
“Bad days are bad. Bad days, it’s hard to feel like I have purpose. That’s the difference. Some days I can remember that I still have important things to do, and bad days I go, ‘yeah, really?’”
She fills her days gardening and spending time with family, as well as making flower pins in the Alzheimer’s colors, which were sold at the event.
At the end of the meeting, members wrote sticky notes on the board in answer to a few of the guiding questions.
One meeting participant, whose 70-year-old brother recently showed signs of dementia after sustaining a brain injury, was curious about preventative measures such as nutrition.
Most common among the notes were calls for increased funding and care for caregivers, and some said they had more questions about dealing with this than answers.
For the 24/7 Alzheimer’s Helpline, call 1-800-272-3900.
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