The COVID-19 world of dementia patients and caregivers

Daisy Conant thrives on routine.

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

“We’re dropping like flies,” she said one morning recently, raising her hands.

“She’s scared,” her grandson Erik Hayhurst, 27, explained. “I have to sort of pull her out and explain the facts to her.

Conant has not been diagnosed with dementia, but his family has a history of Alzheimer’s disease. She had been living independently in her house for 60 years, but Hayhurst decided to move in with her in 2018 after showing obvious signs of memory loss and falling repeatedly.

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

Then COVID-19 arrived, destroying Conant’s routine and isolating him from his friends and relatives.

Hayhurst had to rebuild his life too. He has suddenly become his grandmother’s sole caregiver – other family members can only visit from the lawn.

The coronavirus has changed the lives of dementia patients and their caregivers. Adult Day Care Programs, memory coffees and support groups have closed or moved online, offering less help to 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 maintain health and happiness, making life more difficult for everyone involved.

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

Almost 6 million Americans aged 65 and over have Alzheimer’s disease, the most common type of dementia. About 70% of them live in the community, mostly in traditional homes, according to the Alzheimer’s Assn’s 2020 Facts and Figures report.

People with dementia, especially those in advanced stages of the disease, are living in the present moment, said Sandy Markwood, chief executive of the National Assn. regional agencies on aging. They may not understand why family members don’t visit or why, when they visit, they don’t come into the house, she added.

“Visits under current restrictions, such as a drive-through or window visit, can actually lead to more confusion,” said Markwood.

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

The Alzheimer’s Assn. 24-hour helpline has seen a change in the type of assistance requested during the pandemic. Callers need more emotional support, their situations are more complex, and calls are “heavier,” said Susan Howland, program director for Alzheimer’s Assn. California Southland Chapter.

“So much [callers] are looking for advice on how to close the gap in care, ”said Beth Kallmyer, vice president of care and support for the association. “Others just feel overwhelmed and just need someone to reassure them.”

As many activities that supported dementia patients and their caregivers have been canceled due to physical distancing requirements, dementia and caregiver support organizations are developing or trying other strategies, such as virtual wellness, registration calls for nurses and online support groups for caregivers. Engaged, an online resource center for seniors, maintains a directory of innovative programs developed since the start of the COVID-19 pandemic.

They include correspondence services and letter writing campaigns, robotic pets, and weekly online choir rehearsals.

Hayhurst has had a hard time during the pandemic.

For example, he says, it was difficult for Conant to understand why she needed to wear a mask. Eventually, it became part of the routine when they left the house for daily walks, and Conant now puts on his mask without prompting.

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

People with dementia can become restless when learning new things, said Dr. Lon Schneider, director of the Alzheimer’s Research Center at USC. To reduce distress, he said, caregivers should only require masks to be worn when necessary.

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

“I try to use the same words every time,” Moran said. “I tell him that there is a virus that kills a lot of people, especially the elderly. And she’ll say, ‘Oh, I’m that age.’ “

If Moran forgets to explain the need for a mask or social distancing, his mother becomes combative. She raises her voice and refuses to listen to Moran, much like a child getting angry, Moran says.

“I can’t enter 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 science at Johns Hopkins University School of Medicine.

“The caregivers are also alone,” she says.

When orders to stay at home first arrived in March, Hayhurst’s grandmother repeatedly said she felt lonely, he recalls. “The lack of interaction made her feel a lot more isolated,” he said.

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

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

Moran also feels isolated, in part because she receives less help from her family. In addition to caring for his mother, Moran is studying 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 visiting. She comes a few times a week.

“She’s staying with my mom and the baby so I can get some sleep,” Moran said.

Before COVID, Moran used to go out on her own. Losing that little free time makes her lonely and sad, she admitted.

“I did my nails, ran errands on my own, and went out on lunch dates with friends,” Moran said. “But not anymore.”

Heidi de Marco writes for Kaiser Health news, a non-profit information service covering health issues This is an independent editorial program of the Kaiser Family Foundation and is not affiliated with Kaiser Permanente.