Bob’s forgetting of his name because of Alzheimer’s disease is symbolic of a larger loss of identity, a loss of capabilities, independence and even history. In a room designed for people like Bob, laughter provides a restoration of dignity, enjoyment, and camaraderie, because laughter is a group activity.
“Here’s your name,” a volunteer said, handing Bob, who had just walked in the room, his name tag.
“Do you know what it is?” quipped another man, already seated.
“Sometimes,” Bob replied, his grin wide in jest.
This typical, self-depreciating joke packed a big punch for Bob, because Bob’s statement is true. Bob, like all the other participants in the room, suffers from mild memory loss.
For them, what is mild now will not be forever mild. They are all in the early stages of dementia, including the most common form of dementia, Alzheimer’s disease. The National Institute on Aging defines Alzheimer’s disease, which is estimated to inflict more than five million people in America, as “an irreversible, progressive brain disorder that slowly destroys memory and thinking skills, and eventually the ability to carry out the simplest tasks.”
Bob’s forgetting of his name is symbolic of a larger loss of identity: a loss of capabilities, independence and even history. The phrase, “laughter is the best medicine,” seems to do injustice to the seriousness of the disease.
But in a room, with others similarly affected, laughter represents a wider supportive social network where those who struggle with gradually debilitating diagnoses feel comfortable and free to laugh, even at their own expense.
On Thursday mornings, the Meeting of the Minds program hosts 10 to 12 individuals with a range of memory problems. This is one of several programs put on by the Alzheimer’s and Dementia Alliance of Wisconsin to assist those who suffer from memory loss, as well as their caretakers.
The program advertises itself as a memory enhancement program and is made up of a series of cognitive exercises, but Family Support Coordinator Pat Wilson realizes that much of the power of the program comes from positive social interaction. The goals of the program, she said, are not only “to exercise the brain” but to “have them feel successful, have them walk out feeling great.”
Wilson noted that caretakers have noted the frequency of a participant leaving with “a big smile on their face; sometimes it lasts them through the week, sometimes until almost the beginning of the next week.”
She also knows that at its core, the group functions as a de facto support group, much like the formal support group for the care partners that takes place right next door. They can discuss difficult topics like having to surrender their driver’s licenses, being occasionally irritated by their care partners, or losing their ability to read.
They have a patience with each other that Wilson believes is rare.
“That’s the beauty of the way they interact together; they get to know each other as to what their weaknesses are,” Wilson said, noting she admired “how supportive they are and how respectful they are of a person’s disability.”
They feel free to be themselves, and don’t have to stress about occasionally repeating themselves or being unable to recall information, she said. They had to promise neighboring groups that they would “try not to laugh too hard.”
This laughter is partially due to the colorful cast of characters in the room. The sassy one-liner (“Would you like to introduce yourself? “I’m me!”), the two men functioning as a Statler and Waldorf team, the soft-spoken commentator, the dog-lover, and the Ph.D. with insightful stories, to name a few.
All were quick with a joke or a jibe, but sometimes deeper frustrations or sadness rose to the surface.
“Thankfully there are organizations like this, that help take care of us,” a participant named Dick said. “But we haven’t had anything come out of neurobiology in a long time to help us.”
The room fell silent.
“I don’t see where the research is coming from or what they’re concentrating on,” he continued, the frustration building in his voice.
“The only thing I know is they asked me if I’d donate my brain,” he said. “And I said ‘Yeah, okay,’ so I signed the stuff, and that’ll be it. And that’s discouraging to me.”
While research is being done, the complex nature of Alzheimer’s disease makes finding the cause, and therefore the cure, difficult. Research “is accelerating right now,” said Dorothy Farrar-Edwards, chair of the department of kinesiology at University of Wisconson-Madison and core leader of outreach, recruitment and education at the Wisconsin Alzheimer’s Disease Research Center, referencing recently passed legislation that will give $300 million to the National Institute of Health specifically for Alzheimer’s research in 2016. Recently, UW researchers reported finding a potential new treatment for Alzheimer’s disease–a way to reverse plaque buildup on the brain.
Farrar-Edwards is passionate about the power of research, and noted that the center is always looking for people to participate in their studies, even people who have no family history of Alzheimer’s disease. “I want as many people as possible to see they do have a part to play” she said.
But for Dick, this research will probably come too late to benefit him directly, and that is a difficult fact to face.
The caregivers of these participants also take on a share of tragedy. Even the term “caregiver” represents a fundamental shift in relationship with the affected person.
“It’s hard for me to accept and think of myself as a caregiver; I want to be a partner,” said Fred Haltviek, who has been caring for his dementia-diagnosed partner for the last two years.
These are difficult realities to confront, and they are even more difficult to confront alone.
Farrar-Edwards said that brain teasers and group activities “might not change the underlying problem,” but if an individual is in an environment where they are benefitting from greater engagement, more social support, less stigma, and less depression, “this will lead to them “feeling better, doing better, and being more functionally independent.”
Barbara Bowers, professor and associate dean for research in the school of nursing at UW, said “decades of research” have shown that “social engagement is actually one of the most important things you can do for quality of life and longevity.”
Social engagement, mental stimulation and fun are a powerful mix, and every activity at the Meeting of the Minds aimed for this combination. The participants guessed at trivia, listened to some Andrews Sisters oldies, learned historical facts, performed music, and finished off with a collaborative group storytelling effort, laughing all the way.
There was a reason for this variety: not only did the different activities stimulate different parts of the brain, but the range of activities allowed everyone to be a winner.
“Then everybody feels good, because they were successful at something or maybe a good share of it,” Wilson said.
The participants, and even the volunteers, certainly looked like they were feeling good.
One volunteer told the participants, “You all make this class so welcome, so…”
In her pause to find an adequate descriptor, the participants jumped in to help her out.
“Joy-filled!” interjected one.
“Unforgettable!” said another.