The COVID-19 world of dementia patients, caregivers

Daisy Conant thrives on routine.

The 91-year-old resident of Gardena loves reading the newspaper with her morning coffee. But lately, the news surrounding the coronavirus pandemic has been more than pleasant.

‘We drip like bottles,’ she said one recent morning, throwing her hands up.

‘She gets scared,’ explained her grandfather Erik Hayhurst, 27. ‘I have to pull her back a bit and walk her through the facts.’

Conant has not been diagnosed with dementia, but her family has a history of Alzheimer’s disease. She had lived independently in her 60-year-old home, but Hayhurst decided to move in with her in 2018 after she showed clear signs of memory loss and relapsed.

For a while, Conant remained active, meeting with friends and neighbors to walk her neighborhood, attend church, and visit the horn market. Hayhurst, a project management consultant, took care of his youth.

Then came COVID-19, destroying Conant’s routine and isolating her from friends and loved ones.

Hayhurst has had to remake his life as well. He suddenly became the only caregiver of his grandmother – other family members can only visit from the lawn.

The coronavirus has improved the lives of patients with dementia and their caregivers. Adult Day Programs, memory cafes and support groups have closed or relocated online, provided less help for caregivers and less social and mental stimulation for patients. Fear of spreading the virus limits personal visits from friends and family.

These changes have been disrupted long-term routines that millions of people with dementia are trusted to maintain health and happiness, making life harder for all involved.

“The pandemic has been devastating for 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 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 Assn’s Facts and Figures report. 2020.

People with dementia, especially those in the advanced stages of the disease, are currently living, said Sandy Markwood, chief executive of the National Assn. of Area Agents on Aging. They may not understand why family members do not visit or why, when they do, they do not come into the house, she added.

“Visiting under 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 24-hour helpline of Alzheimer’s Assn. Has seen a shift in the kind of assistance requested during the pandemic. Bells need more emotional support, their situations are more complex, and there is a greater “pregnancy” to the conversations, said Susan Howland, program director for Alzheimer’s Assn. California Southland Chapter.

‘So much [callers] seek advice on how to address gaps in care, ‘said Beth Kallmyer, vice president of the Association of Care and Support. “Others just feel overwhelmed and just need someone to calm them down.”

Because many activities that encourage dementia patients and their caregivers have been canceled due to physical distancing requirements, dementia and care organizations are expanding other strategies, or trying other strategies, such as virtual wellness activities, nurse check-ins, and online care groups for caregivers. . Engaged, an online resource center for older adults, maintains a folder of innovative programs developed since the beginning of the COVID-19 pandemic.

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

Hayhurst experienced some rocky moments during the pandemic.

For example, he said, it was difficult for Conant to understand why she had to wear a mask. He finally made it part of the routine when they left the house on daily walks, and Conant now puts on her mask without asking.

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

People with dementia can become irritable as they learn new things, said Dr. Lon Schneider, director of the Alzheimer’s Disease Research Center at USC. To reduce distress, he said, caregivers should only wear mask-wear.

That was a lesson Gina Moran from Fountain Valley learned early on. Moran, 43, is caring 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 that kills a lot of people, especially the elderly. And she will respond, ‘Oh, I’m at that age.’ ”

When Moran forgets to explain the need for a mask or social distance, her mother gets stubborn. She raises her voice and refuses to listen to Moran, just like a child throwing a tantrum, Moran said.

“I can not enter more information than that, because she will not understand,” she said. “I try to keep it simple.”

The pandemic also increases 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 Johns Hopkins University School of Medicine.

“Caregivers are lonely, too,” she said.

When house-to-house orders first came down in March, Hayhurst’s grandmother repeatedly said she felt lonely, he recalls. “The lack of interaction has made her feel much more isolated,” he said.

To keep in touch with family and friends, he regularly sets up Zoom conversations.

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 receives less help from family. In addition to caring for her mother, Moran is studying sociology online and is in the process of adopting 1-year-old Viviana.

Currently, to minimize her mother’s exposure to the virus, Moran’s sister is the only person trying. She comes a few times a week.

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

Before COVID, Moran spent more on herself. Losing that little bit of free time makes her lonely and sad, she feels.

“I would do my nails, run errands with myself and go out on friend dates with friends,” Moran said. “But not anymore.”

Heidi de Marco writes for Kaiser Health News, a nonprofit news service that addresses health issues. It is an editorially independent program of the Kaiser Family Foundation and is not affiliated with Kaiser Permanente.