Also, most Alzheimer’s support groups are for caregivers, not for people living with dementia. And these couples wanted to stay together, with those giving the care side by side with those receiving it. So they started a supper club, humorously called the Wild Bunch. Once a month, the couples meet at one of their homes, casseroles and wine bottles in hand, to swap stories, trade jokes and have a good time.
Staying connected to other people and combating loneliness in the face of a disease that steals a person’s memory and ability to care for himself is important, doctors and dementia experts say. Research shows that the lack of social contact has adverse consequences on the health and well-being of patients and caregivers alike.
Do-it-yourself social networking among people living with cognitive impairment is beginning to take off around the country. The Wild Bunch is in Portland, Ore. Locally, two memory cafes in Northern Virginia and a memory club in the District allow caregivers and people with Alzheimer’s to mingle and enjoy one another’s company.
In Bethesda, the Friends Club has served politicians, judges, journalists and business leaders with early to mid-stage Alzheimer’s since 1990. The club organizes four hours of activities — in the form of discussion groups, exercise, guest lectures, entertainment — for up to a dozen men with dementia on Mondays, Wednesdays and Thursdays; charges are $68 a day.
The size is small enough to “help people feel relaxed and enjoy each other’s company,” said GayLynn Mann, the group’s executive director. Members are typically men who have traveled widely, had significant careers and who “love being in social situations but have started to become isolated” because of their illness, she said.
In Rockville, the Kensington Club at Parklawn, sponsored by the Jewish Council for the Aging and modeled after the Friends Club, has provided similar services for five years to men and women with dementia. Fees are based on individual usage.
As early diagnosis of disabling brain conditions becomes more common, demand is expected to grow for groups like these. About 5 million Americans, most of them age 65. or older, have Alzheimer’s; that number is expected to reach almost 14 million by 2050.
When the Alzheimer’s Association informally asked patients what they most wanted a few years ago, most responded, “We want to be with other people who have the disease — people like us,” said Beth Kallmyer, the association’s vice president of constituent services.
A difficult balance
When the Wild Bunch started in 2010, its six couples were all committed to learning from each other. Some of the members had a firm diagnosis of Alzheimer’s or another type of dementia; others had a condition that often precedes Alzheimer’s known as mild cognitive impairment. Most had manageable symptoms and were still functioning at a relatively high level.
Three years later, none of the couples has left the group, though this has happened in other groups when a member’s illness becomes advanced. “When people need the next level of care and they come to a point where they really cannot concentrate on what’s being said, we cycle them out of the group. It’s probably the most difficult part of my job,” said Mann of the Friends Club.
As is true in any social situation, some Wild Bunch members with cognitive impairments are quiet during get-togethers while others jump in, eager to share their thoughts and feelings. It all depends on the mood at the moment and how they respond to others around them.
On a recent afternoon, 14 people — most of them from the original dozen — sat in a circle at the home of Milt and Meme Amaral in Lake Oswego, Ore., and chatted about vacations, pets and relatives they’d seen recently. Then, the conversation turned to more serious matters.
Barbara Thompson’s boyfriend had died in the past month; the group hadn’t known he’d been ill. “I guess I’ll be on my own now,” said Thompson, 67, a former social worker who has mild cognitive impairment.
Milt Amaral, 70, a retired mutual fund marketer, announced that he has pulmonary fibrosis, a condition that scars the lungs. “What this really does is throw another kink into our thoughts about our future. If something should happen to me, who’s going to take care of Meme?” he said.
“Milt keeps telling me that I’m doing fine,” said Meme Amaral, 72, who has early-stage Alzheimer’s. “But I know I’m doing things I wouldn’t ordinarily do, like missing a cue. I feel that in the last month or so I have gotten much more involved in this disease than I would like.”
It’s a difficult balance, paying attention to signs of cognitive difficulties yet not losing a sense of purpose and pleasure in daily life, the group agreed. “I can’t afford to think too much about it,” Meme Amaral said, referring to the sense that she’s sliding gradually downhill. “Otherwise, I will bury myself in it, and I don’t want that.”
The next day, she explained further: “I have chosen to say, ‘Okay, fine; I have Alzheimer’s, so let’s put that away and let’s get on to something else until such time as I can’t find the drawer to put things into.’ ”
For her, the Wild Bunch is a tonic. “I love the group because we can all laugh at one another and it’s not a sad, morose thing. It’s a form of relief to be able to say, ‘Oh my God, you didn’t just say that, did you?’ and not worry about it.”
‘Sharing a good time’
For Milt Amaral, who also belongs to two support groups for caregivers, the Wild Bunch gives him a break from focusing on the grinding details of daily life. “In my support groups there are some very angry people who are looking at themselves and saying, ‘Poor me.’ Here, the Wild Bunch is just a wonderful group of people who are good friends sharing a good time,” he said.
Dave Caswell, 79, a retired salesman and former Marine sergeant who’s caring for his wife, Hallie, 75, who has early-stage Alzheimer’s, says he has become a better caregiver because of the Wild Bunch: “more mellow, more understanding, more patient.” Not because the couples talk about caregiving much — they don’t — but because in embracing each other without judgment, they’ve found a way to accept their own limitations and fears. “It’s a blessing,” Hallie Caswell said.
As in any group, there have been losses. Earlier this year, Richard Luis, 73, who had advanced Lewy body dementia — a condition that tends to progress more quickly than Alzheimer’s and that often involves hallucinations and symptoms similar to Parkinson’s disease — died in his sleep; his wife, who just turned 70, remains a member.
Social interactions for people with dementia have been getting more attention; recently, the Alzheimer’s Association announced plans to roll out social engagement programs and peer-to-peer counseling programs nationwide. Some programs may invite caregivers and people living with dementia to participate jointly; others may not.
The appeal of the Wild Bunch is that anyone can create a group like it, in any community, with no infrastructure needed. “We’re not a sponsored entity,” Dave Caswell said. All it takes is an understanding that “there is joy in camaraderie and strength in numbers” if couples commit to going through the journey of dementia together, he added.
When Milt Amaral was asked what he’d like other people to know about the disease, he said, “Don’t exclude people with Alzheimer’s from your life. I think the thing that hurts people with Alzheimer’s the most — and also the caregivers — is when people turn away and walk away because they don’t want to have anything to do with this illness or they don’t know how to handle it. Just be normal. Just be accepting.”
Graham is a health and medicine reporter with a special interest in aging issues.