With dementia at flood tide in NC, person-to-person support groups address problems - North Carolina Health News
By Thomas Goldsmith
Stan Eskridge learned about sundown syndrome not long ago when his wife of 54 years showed shocking anger toward him near the end of the day.
Eskridge recalled his experiences last week as part of his check-in among a room of people in a Chapel Hill support group for dementia caregivers. Group members nodded knowingly as he recounted harsh words from the woman who had always been his rock, but who lives with growing memory loss.
Researchers and many caregivers recognize sundown syndrome as a set of symptoms and say people with dementia can display reactions such as anxiety, aggression, and confusion in the late afternoon or night.
”She’s always feeling like I’m controlling or rebuking or trying to correct her,“ Eskridge said. “It gets very intense.”
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More than 170,000 people in North Carolina have some form of dementia, and multiple efforts are underway across the state to deal with it. Those responses range from sophisticated academic research to the low-tech support group run by Charles House, a nonprofit that also operates an adult day care and residential homes in Chapel Hill.
“It’s one of the rare places where we can be with others, where we don’t have to either explain ourselves or know that it’s a blank wall we’re explaining ourselves to,” said Paul Klever, executive director of Charles House.
The dementia support group deals with the present reality of caregivers at the UNC Wellness Center at Meadowmont, where health educator Susan Chesser conducts the meetings with Klever. The eight people who attended last week had parents or spouses with neurocognitive disease. They told their stories unflinchingly, producing tears and laughter in roughly equal measure.
‘His language is almost gone’
An overwhelming sense of loss united the caregivers’ situations: A spouse or parent with whom someone had shared decades of thoughts, habits and affection has largely become a different person. That was the case for Alison, whose husband has advancing memory loss.
“At home, we were pretty quiet,” Alison said. “His language is almost gone. He used to be an avid reader, but he’s lost his reading ability.”
The couple had been infrequent television consumers, but the husband’s disappearing ability to read meant they have recently spent more hours watching.
“I hate to leave him in front of the TV for more than an hour or two,” she said.
People who care for those with dementia value three aspects of a support group most highly — a means to share experiences, a source of information, and a place where they can talk candidly about the gut-wrenching job of looking after someone who may no longer recognize even closest kin.
At Meadowmont, the opening check-in lets everyone vent or relate small wins. A general discussion later, called a learning circle and led by Klever and Chesser, presents information from both the professionals and group members. Klever responded to Stan’s question about sundowning with information that didn’t resonate with undue optimism.
“I have not had many families that have success stories with that,” Klever said. “It’s a troublesome kind of thing. There isn’t a magic medication that can preempt it very fast.”
Learning the ropes
Group members Jamilah Calloway and Scott Mitchell, both caring for parents with dementia, related some successes — being able to continue working, finding good care for their mothers. But caregivers don’t miss other changes, such as the loss of some friends and relatives who shy away when dementia changes a family’s life routine and ease of conversation.
Places for help
Organizations across the state offer support groups for caregivers for people with dementia
- Alzheimer’s Association, Eastern North Carolina Chapter: “We provide education and support to all those facing Alzheimer’s and other dementias throughout our community.”
- Alzheimer’s Association, Western North Carolina Chapter: “We have many support groups throughout central and western North Carolina, at various times and locations.”
- Dementia Alliance of North Carolina: “Offering local support groups throughout the state of North Carolina so that location is never a factor that hinders a caregiver from attending a group session.”
- Project CARE: “State-funded, dementia specific support program for individuals who directly care for loved ones with Alzheimer’s disease or related dementias.”
“I love this group, and the support,” Calloway said. “But what is my social circle?”
Before her mother came to live with her, Calloway said, her house was a hub, a casual gathering place for friends.
“Now people don’t feel comfortable just coming by and chilling,” she said. “People didn’t have to call, they would just show up.”
No one had a solution for Calloway. Nonetheless, she appreciated the opportunity to discuss the isolation that caregivers feel. Meanwhile, they certainly feel continued love for care recipients who may have irrevocably changed.
“I had to go to my own therapy just to sort of come to terms with the mother that I knew — she’s kind of not really there,” Mitchell said. “She’s still very sweet, as she always was.”
It’s research-tested
Research has shown the value of support groups to those who provide for the needs of people close to them who have dementia.
“Support groups encourage care partners and individuals living with dementia to share personal experiences and learn from others, while fostering engagement and socialization,” researchers Carol J. Whitlatch and Silvia Orsulic-Jeras wrote in the Gerontologist in 2018.
“Groups can be led either by a professional or peer, can target the individual living with dementia and/or the family caregiver, and bring together similar kin groups of attendees (e.g., spouses, adult children, men, women, etc.).”
Some researchers have found that an approach that involves several different components may have more value than support groups alone.
Klever, convinced of the value of support groups after seven years of leading this group, raised a key point, about a thought process that might even be a danger signal.
“Loss and sadness are natural parts of this process — depression is not,” he said. “We shouldn’t confuse the need to treat the problem with the need to live and go through with our lives.”
