Isolation, Disruption and Confusion: Coping With Dementia During a Pandemic

GARDENA, Calif. — Daisy Conant, 91, thrives off routine.

One of her favorites is reading the newspaper with her morning coffee. But, lately, the news surrounding the coronavirus pandemic has been more agitating than pleasurable. “We’re dropping like flies,” she said one recent morning, throwing her hands up.

“She gets fearful,” explained her grandson Erik Hayhurst, 27. “I sort of have to pull her back and walk her through the facts.”

Conant hasn’t been diagnosed with dementia, but her family has a history of Alzheimer’s. She had been living independently in her home of 60 years, but Hayhurst decided to move in with her in 2018 after she showed clear signs of memory loss and fell repeatedly.

For a while, Conant remained active, meeting up with friends and neighbors to walk around her neighborhood, attend church and visit the corner market. Hayhurst, a project management consultant, juggled caregiving with his job.

Then COVID-19 came, wrecking Conant’s routine and isolating her from friends and loved ones. Hayhurst has had to remake his life, too. He suddenly became his grandmother’s only caregiver — other family members can visit only from the lawn.

The coronavirus has upended the lives of dementia patients and their caregivers. Adult day care programs, memory cafes and support groups have shut down or moved online, providing less help for caregivers and less social and mental stimulation for patients. Fear of spreading the virus limits in-person visits from friends and family.

These changes have disrupted long-standing routines that millions of people with dementia rely on to help maintain health and happiness, making life harder on them and their caregivers.

“The pandemic has been devastating to older adults and their families when they are unable to see each other and provide practical and emotional support,” said Lynn Friss Feinberg, a senior strategic policy adviser at AARP Public Policy Institute.

Nearly 6 million Americans age 65 and older have Alzheimer’s disease, the most common type of dementia. An estimated 70% of them live in the community, primarily in traditional home settings, according to the Alzheimer’s Association 2020 Facts and Figures journal.

People with dementia, particularly those in the advanced stages of the disease, live in the moment, said Sandy Markwood, CEO of the National Association of Area Agencies on Aging. They may not understand why family members aren’t visiting or, when they do, don’t come into the house, she added.

“Visitation under the current restrictions, such as a drive-by or window visit, can actually result in more confusion,” Markwood said.

The burden of helping patients cope with these changes often falls on the more than 16 million people who provide unpaid care for people with Alzheimer’s or other dementias in the United States.

The Alzheimer’s Association’s 24-hour Helpline has seen a shift in the type of assistance requested during the pandemic. Callers need more emotional support, their situations are more complex, and there’s a greater “heaviness” to the calls, said Susan Howland, programs director for the Alzheimer’s Association California Southland Chapter.

“So many [callers] are seeking advice on how to address gaps in care,” said Beth Kallmyer, the association’s vice president of care and support. “Others are simply feeling overwhelmed and just need someone to reassure them.”

Because many activities that bolstered dementia patients and their caregivers have been canceled due to physical-distancing requirements, dementia and caregiver support organizations are expanding or trying other strategies, such as virtual wellness activities, check-in calls from nurses and online caregiver support groups. EngAGED, an online resource center for older adults, maintains a directory of innovative programs developed since the onset of the COVID-19 pandemic.

They include pen pal services and letter-writing campaigns, robotic pets and weekly online choir rehearsals.

Hayhurst has experienced some rocky moments during the pandemic.

For instance, he said, it was hard for Conant to understand why she needed to wear a mask. Eventually, he made it part of the routine when they leave the house on daily walks, and Conant has even learned to put on her mask without prompting.

“At first it was a challenge,” Hayhurst said. “She knows it’s part of the ritual now.”

People with dementia can become agitated when being taught new things, said Dr. Lon Schneider, director of the Alzheimer’s Disease Research Center at the University of Southern California. To reduce distress, he said, caregivers should enforce mask-wearing only when necessary.

That was a lesson Gina Moran of Fountain Valley, California, learned early on. Moran, 43, cares for her 85-year-old mother, Alba Moran, who was diagnosed with Alzheimer’s in 2007.

“I try to use the same words every time,” Moran said. “I tell her there’s a virus going around that’s killing a lot of people, especially the elderly. And she’ll respond, ‘Oh, I’m at that age.’”

If Moran forgets to explain the need for a mask or social distancing, her mother gets combative. She raises her voice and refuses to listen to Moran, much like a child throwing a tantrum, Moran said. “I can’t go into more information than that because she won’t understand,” she said. “I try to keep it simple.”

The pandemic is also exacerbating feelings of isolation and loneliness, and not just for people with dementia, said Dr. Jin Hui Joo, associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. “Caregivers are lonely, too.”

When stay-at-home orders first came down in March, Hayhurst’s grandmother repeatedly said she felt lonesome, he recalled. “The lack of interaction has made her feel far more isolated,” he said.

To keep her connected with family and friends, he regularly sets up Zoom calls.

But Conant struggles with the concept of seeing familiar faces through the computer screen. During a Zoom call on her birthday last month, Conant tried to cut pieces of cake for her guests.

Moran also feels isolated, in part because she’s getting less help from family. In addition to caring for her mom, Moran studies sociology online and is in the process of adopting 1-year-old Viviana.

Right now, to minimize her mother’s exposure to the virus, Moran’s sister is the only person who visits a couple of times a week.

“She stays with my mom and baby so I can get some sleep,” Moran said.

Before COVID, she used to get out more on her own. Losing that bit of free time makes her feel lonely and sad, she admitted.

“I would get my nails done, run errands by myself and go out on lunch dates with friends,” Moran said. “But not anymore.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Heidi de Marco, Kaiser Health News

Kaiser Health News

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.