For eight months the couples met at the local offices of the Alzheimer’s Association learning about dementia, a diagnosis that had turned their lives upside down.
They cried together. Laughed together. Told each other things they hadn’t told anyone else. And became close friends.
Then this group of dementia patients and caregivers finished the class and it was time to move on, association staff said. Support groups were an option. But that didn’t seem right, meeting with strangers to talk about this devastating illness.
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. …
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Judith Graham is a health and medicine reporter with a special interest in aging issues.