Despite the popular perception of Alzheimer’s disease, the hands-on experience of people and families living with the disease reveals that it does not mean the end of rich lives and relationships despite the reality of confronting an illness without a cure, professional and family caregivers say.
On April 25, the Martha’s Vineyard Center for Living (CFL) sponsored a forum on Alzheimer’s disease that attracted about three dozen people, many with poignant stories to tell. Alzheimer’s care specialists and several of those present debunked the idea that the irreversible illness is simply an exhausting process of debilitation for the afflicted and their caregivers. And they offered anecdotal and medically-based examples to indicate that love, continuous social interaction and stimulus from arts, music and culture work best to counteract the effects of the disease, in some cases reversing the decline and improving the quality of life for Alzheimer’s sufferers and their families.
The CFL has offered supportive daycare for 29 years and recently added programs to teach, support and offer respite service for Alzheimer’s caregivers, in addition to daycare programs four days a week for Alzheimer’s sufferers.
Alzheimer’s is one of about 50 identified dementia forms, accounting for 50-80 percent of dementia patients, according to the alz.org website. Alzheimer’s attacks the brain’s neural centers. Many other dementia forms are centered in the vascular systems. No cure exists for Alzheimer’s, though potential medical treatment protocols are in development, according to literature on the subject.
Leslie Clapp, CFL executive director, opened the session with the admission that, “Alzheimer’s is a journey and it can be a frightening and exhausting experience for patients and caregivers.” Ms. Clapp introduced a group of local, regional and national Alzheimer’s care activists who focus on improving quality of life for families with Alzheimer’s. They are also intent on changing a public perception of the illness that they said is rooted in fear.
John Zeisel, Ph.D., author of the best-selling “I’m Still Here,” and founder and president of Hearthstone Alzheimer Care facilities, pointed to the potential for a rich, albeit different life for patients and their families.
“There are 100 billion neurons in the human brain and only a small portion of them, even in late stages of Alzheimer’s, are affected by the disease,” he said. The creative centers of the brain are not impaired by the disease and are a way to “unlock” memory as well as enhancing acuity and quality of life, Mr. Zeisel said, adding that certain skills and abilities are “hardwired” in humans and are always available to people with Alzheimer’s.
“The skills that last involve learning and imagination,” Mr. Zeisel said. Declarative ( e.g. formal school education ) learning is impaired but procedural learning by doing (playing tennis or golf) is not impaired by memory loss.”
Both Nancy Langman, former director of the Martha’s Vineyard Community Service’s counseling center, and Ann Smith, executive director of the Featherstone Art Center in Oak Bluffs, noted the positive impact that visual art has on Alzheimer patients.
In response, Mr. Zeisel spoke about a dementia patient who remarked that “Christina,” perhaps Andrew Wyeth’s best-known painting, was out of scale. Further investigation unearthed the fact that Wyeth himself had remarked years ago on precisely the same issue, noting he had used two different models, one for the upper body and another for the lower body.
Mr. Zeisel said the successful paradigm for dealing with Alzheimer’s is based on perspective. “Do we live in hope or in despair?” he asked. “We need to approach this from the perspective of what is remaining (in patients), not from what is lost.”
Presenters included Suzanne Faith, clinical director of Hope Dementia and Alzheimer’s Services of Cape Cod, Ms. Langman, a Martha’s Vineyard Hospice bereavement counsellor, and Eileen Murphy, CFL’s supportive day program supervisor.
Alzheimer’s progresses in three stages, Ms. Faith explained, referring to a handout that outlined the symptoms and pathology that typically occurs in both the patient and the family. She advised that a plan — including a budget, legal affairs planning, and caretaking arrangements — be dealt with at early onset stage. She said that denial by patients and families hinders early treatment and creates future problems.
“There are 10,000 people with some form of diagnosed dementia on Cape Cod and the Islands,” she said. “We all know someone. The real work begins in support groups to learn the tools on how to give care. There are invaluable people and skills available. People are often afraid of support groups. They have no point of contact. Sometimes they are afraid of being put on the spot.”
Health care professionals drew the landscape of a fulfilling life for Alzheimer’s patients and family. Several family caregivers offered color and texture to the positive aspects of their lives with Alzheimer’s.
A woman whose husband was diagnosed in 2008 attended the Center for Living’s first 12-part course for caregivers two years ago. She praised the group’s support. “My husband is not gone,” she said. “He is still my husband. I will not let him become his diagnosis.”
The woman said she and her husband practiced the 30 questions asked of patients during annual checkups to measure mental capacity. “At the end, the doctor looked at me and said he had reversed his decline by two years,” she said.
Socially, Alzheimer’s is the equivalent of what having AIDS was 20 years ago, one speaker said. “Phone calls and social invitations just stopped. People are afraid they’ll say the wrong thing, not know what to do. Our family motto is, It could be worse,” she said to laughter and applause.
A safe environment
Eileen Murphy, COL program supervisor, made similar points. “We serve the most vulnerable elders and families,” she said. “An extra set of eyes for caregivers who are elder spouses or families with small kids. We’re serving your friends, neighbors, and families. If we’re not serving you now, probably at some point we will be. It could be you or me who needs the services of the supportive day program.”
The supportive daycare program operates four days a week, Monday and Wednesday at the Edgartown Center on Aging and Tuesday and Friday at Tisbury’s COA.
“People ask, What do you do there? We do life. Provide clients and their families with peace of mind, knowing loved ones are in a safe environment with compassion and love. A little bit of love and compassion goes a long way to supporting people with memory loss.
“Our programming focuses on the capacities and abilities people have, not on what they’ve lost. Their ability to have fun, be social, make friends, is completely intact. We have so much humor and love in the course of a day.”
Following the meeting, Ms. Murphy told the Times, “There is a paradigm shift going on with regard to Alzheimer’s,” she said. “We know so much more than we did five or 10 years ago. We see the positive changes in patients and families.
“It is still a long dark road, but we can deal with it as we do with other issues in life. There is always a subtext of sadness. Generally, perspective makes the difference. Is the glass half-full or half-empty? And families need support to maintain that positive perspective.
“We are enabling families to keep their frail loved ones living at home and happily participating in their community.”
The CFL provides Alzheimer’s care services despite the lack of a dedicated space. “We are in desperate need of a home,” Ms. Murphy said. “We’ve been running this program for 29 years without a home. We transport all our materials — and sometimes people — several times a week.
“A home would allow us to offer three levels of programming in every hour of the day. We serve three different levels of cognitive ability and at least two different levels of physical ability, so it’s tough to have three levels of programming going on in the same room at the same time.”
Ms. Murphy said that the Vineyard Transit Authority has been fantastic. “Vicki Moreis and the VTA go above and beyond to transport clients safely,” she said. Cape and Island Elder Services provides meals and family support, including financial support, she said.
And she offered encouragement. “Don’t be afraid of this program and don’t be afraid to take a really good look at Alzheimer’s and to talk about it,” she said. “Some of our patients do not have Alzheimer’s and some don’t have memory loss but are dealing with other aspects of the aging human condition.”
And she appealed to the community for support. “It’s time for the community to step up and do what’s necessary to give this program a permanent home. In the coming months, we’ll be working with the County, speaking at town meetings and in the press,” she said. “Step up to the plate. We are them.”