Having dementia, being a care partner, or knowing someone with dementia is an increasingly common experience for most of us. There are approximately 6 million Americans with dementia, mostly Alzheimer’s, 130,000 in Massachusetts. The Vineyard is no different from anywhere else, except that we do have an active and committed group of people who want to keep life as normal and gratifying as possible, to support families as they face a family member’s dementia, and to keep people with dementia active and engaged in their lives.
Martha’s Vineyard Center for Living and Healthy Aging M.V. have collaborated with the Island’s Councils on Aging and other healthcare groups to make the Vineyard one of the Commonwealth’s approximately 120 towns designated as an Age and Dementia Friendly Community. Mike Festa, state director of AARP Massachusetts, and Patty Sullivan, program director for Dementia Friendly Massachusetts and the Massachusetts Councils on Aging, came to the Island last Thursday to bestow that certification. The event was hosted by the center director Leslie Clapp, who welcomed everyone saying, “This is a big deal.” Festa and Sullivan gave framed certificates to Leslie, Cindy Trish, executive director of HAMV, Martina Thornton, county manager of Dukes County, and each of the directors/representatives of the councils on aging: Lyndsay Famariss (Edgartown), Joyce Stiles-Tucker (Tisbury), Susan Habekost (Up-Island), and Rose Cogliano (Oak Bluffs.)
Governor Baker signed legislation in 2018 promoting education and training requirements for healthcare professionals, opportunities for families, and joining the AARP Network of Age Friendly Communities. The Dementia Friends website, dementiafriendsusa.org, gives the history of Dementia Friends, now a global movement, that began in the U.K. It offers an opportunity to learn a bit about dementia in a one-hour program that helps participants understand something about the disease, and how they can recognize and help someone in their community. It stresses inclusion and respect, and allows our shared humanity to come through in a positive way. Actions can be as small as being patient when someone with dementia is having difficulty making a decision or understanding directions. One aid is a small card that can be shown quietly that identifies someone as either having cognitive problems or being with someone who has cognitive issues. That alone can avoid embarrassment and a difficult situation.
Mary Holmes, program director at the center, has taken training to become a Dementia Friends Champion. She has facilitated Dementia Friends programs on the Island, and will continue to do so. Call to find out how you, your staff, or organization can join this movement with a free one-hour training session at 508-939-9440.
It is a common misconception that Alzheimer’s is a loss of memory, that someone living through the process of Alzheimer’s is no longer there, no longer themselves, is incapable of enjoying or participating in life. Friends don’t know what to do, so they stay away, or talk around or over the person with dementia as if they weren’t in the room at all. What used to be normal interactions, like going to a restaurant or a movie, finding a seat on the ferry, shopping in a store, or just walking around town, can all become disorienting for someone with memory impairment. For someone behind a store counter or in an office trying to serve that customer, it can present a frustrating challenge, especially if unaware they are trying to help someone who has dementia. Add the busyness and stress of summer, and you can imagine a rather short-tempered outcome for all participants.
Alzheimer’s is a progressive disease. No one knows for sure what causes it, or whether the amyloid plaques and tau tangles that researchers and drug companies have focused on are responsible for the death of brain tissue, the loss of connections that transmit information within the brain, and the brain’s ability to control all bodily functions. Research continues, and medications to prevent, mitigate, or cure are in trials. But it is a process, one that can take many years. Best to learn about it. We, our friends, our family members, and members of our communities will be living with it for the foreseeable future.
There are many books and videos that describe the stages of Alzheimer’s and the behaviors and capabilities that typify each one. The first book I read was John Zeisel’s “I’m Still Here.” It’s one of the best, giving not only good information, but an upbeat assessment of the potential to connect with a person with Alzheimer’s through every stage of their disease, especially using art, music, and other meaningful activities. Other favorites include anything by Teepa Snow, an occupational therapist with a sense of humor (you will need it) and practical, hands-on ways to help someone get into a chair when their balance and sense of spatial orientation are compromised. Snow also discusses how to help them get dressed when all those clothes are confusing, how to enter a room and make yourself known without startling your person, or to accomplish a necessary task by assisting them to feel more natural — like they are doing it themselves. She tailors her advice to the person’s changing capabilities through the progression of the disease.
There are many organizations that offer Zoom or in-person programs and demonstrations that are so helpful. Alicia Seaver of Bridges by Epoch gives a lot of lectures on a variety of useful subjects. The Alzheimer’s Association and the Alzheimer’s Family Support Group are two others. There are lots, so go online and check them out. Most are free.
Best of all, right here on the Island we have M.V. Center For Living, which runs a Supportive Day Program on weekdays, a support group for caregivers, dementia coaching, Memory Cafes, and other services. Healthy Aging M.V. also has classes and programs from fall prevention to finding a carpenter to build a ramp onto your house. The Councils on Aging are a resource in every town.
I think the most important thing is to be kind. The values of kindness, thoughtfulness, being helpful, respectful, mannerly: All those basics are often overlooked these days. They shouldn’t be considered unnecessary.