Isolation feels sharper for people with dementia during pandemic

One memory cafe attempts to go online during the lockdown
Stuck at home because of coronavirus, dementia patients and their caregivers gather for an online "memory cafe" on Mar. 26. The group is run by Cate McCarty.
Stuck at home because of coronavirus, dementia patients and their caregivers gather for an online "memory cafe" on Mar. 26. The group is run by Cate McCarty. [ KAVITHA SURANA | Kavitha Surana ]
Published March 31, 2020|Updated March 31, 2020

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Little boxes float onto the screen, a Brady Bunch lineup of grainy faces blinking from bedrooms and backyards on a Zoom video call.

Those faces used to gather at memory cafes across Pinellas County run by dementia coach Cate McCarty.

The social club is a way for people with dementia and caregivers to get out of the house and connect with others facing the same challenges. In the past, they would visit Italian restaurants or walk around Tyrone Square mall, chattering about different department stores while McCarty, armed with Mad Libs and pictures, kept the conversation flowing.

Memory lapses and trailing off in the middle of a conversation aren’t embarrassing when they’re together — they’re normal.

But life has been lonely for many of Florida’s elderly since coronavirus hit. Nursing homes are locked down. Visits with loved ones are prohibited. Trips to the grocery store and restaurants are over.

Now, their only option is to attempt to recreate the community online.

With everyone stuck at home, McCarty coaxed her regular participants into trying Zoom, an online video conferencing platform, on their phones and tablets. On a Greek-themed call Thursday, about 20 people joined to talk about their favorite Greek dishes and recall famous sites, like the Acropolis.

One thing missing? The food.

“In a perfect world, we would have had baklava at Acropol," McCarty said on the call.

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It’s not easy to keep the magic going on a video call. People talk over each other, lawnmowers interrupt and children are sometimes heard in the background. Some can’t handle the technology.

“Oh, what shall I do with video? I feel I don’t see it!” one woman said as she struggled to connect. A few people found it hard to focus on the screen and dropped out mid-way through.

McCarty does her best to act as referee, asking each person different questions.

Sometimes, the video calls feels more intimate than the usual group meetings. When someone talks, their face fills the screen and everyone pays attention. Without all the fussing about, side conversations and rifling through menus, people can focus on each other’s expressions. “Oh your wrinkle!” one woman exclaimed as she saw a close-up video.

For many, it’s a small way of maintaining connection during trying times, and better than losing contact. Dementia is already an isolating diagnosis.

“Your world starts shrinking, there’s a lot of stigma," McCarty said.

The pandemic has made that isolation sharper than ever. Familiar routines —the daily trip to Publix, a regular dinner with a family member — are frozen. Florida Memory Care facilities were placed under lockdown in mid-March, canceling activities and requiring meals to be served in individual rooms instead of in communal dining rooms. Some are separated from loved ones who can’t visit, for fear of spreading infection.

These change can be profoundly destabilizing for someone living with dementia. McCarty sees it in her clients’ faces: The way one woman seemed to melt on the screen every time her caregiver mentioned the virus. The man who is used to going to Starbucks twice a day and now can’t understand why it’s empty.

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“He is stuck on the idea that something bad is happening," she said.

Frank Trentinella, 64, said the memory cafes became his and his wife Tina’s main social activity last year after she was diagnosed with frontotemporal dementia. They used to drive to meet-ups across the county multiple times a week. Now they only venture out to take walks around the block.

On the video call Tina, 61, had trouble paying attention to the screen and lost the thread of conversations — but she perked up whenever she heard McCarty’s voice and distinctive chuckle.

“She understands me,” she said of McCarty. “And I make her laugh.”

• • •

One participant on Thursday’s call, Bob Potter, 73, is fighting to keep his wife, Linda, who has Alzheimer’s disease, as stabilized as possible, even from afar. The two have been separated ever since his 72-year-old wife was hospitalized for a stroke on March 17, just as hospitals were locked down to slow the coronavirus.

“I am her anchor," he said. "I have been the constant steady thing in her life.”

Bob Potter manages to talk to her two or three times day, sometimes on a video call. But when his wife sees him on the screen, she doesn’t understand why they are apart. “Come in here, I want to see you,” she says. No matter how many times he explains there’s a virus keeping him from visiting, she doesn’t remember.

On Monday, when she was transferred to Morton Plant Hospital in Clearwater, Potter waited by the entryway and ran to give her a quick hug as she was wheeled inside, defying visitor restrictions.

"I love you, I want to be with you. I want you to take me home,” she told him.

“Only if the sheriff had been there with a gun, would they have been able to stop me," he said.

When his wife is finally released, she will likely return to a changed coronavirus-routine — no Tai Chi or yoga at the senior center, or dinners with their neighbors. Potter says he’ll entertain her with puzzles, movies and a photo-album of their boat trips together.

And, he hopes, with the memory cafe. She hasn’t been able to join in while in the hospital and he’s not sure if she’ll be able to understand all the little videos scattered on the screen. But he thinks seeing their friends again could do her some good.

“She might do okay on it," he said.

Correction: The name of Tina Trentinella name was spelled wrong in a previous version of this report.

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