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Checking In With Caregivers Can Make The Difference Between Pandemic Distancing And Isolation

Dementia and isolation - web

BINGHAMTON, NY (WSKG) — Social distancing has been in a common phrase since the beginning of the pandemic. Doing so can protect people and others around them from the spread of COVID-19. According to experts, however, distancing without efforts to maintain connections can lead to social isolation, especially for people already vulnerable to it, including those with memory loss and their caregivers.

Rudy Fuehrer spends most of his time caring for his wife, Karin, at their home in Conklin, New York. She was diagnosed with frontotemporal dementia, which affects her behavior and abilities, at 58 years old.

Fuehrer, 60, said Karin can’t be left on her own; he’s her primary caregiver. Now, with the pandemic, she’s homebound.

“Since the pandemic really kind of took hold, she’s been at the house, inside the house, almost 24 hours a day,” Fuehrer said.

For both Fuehrers, the lack of engagement is the hardest part. Many social programs for people with memory loss closed in March. Some, like Yesteryears in Broome County, where they live, have since reopened, but with reduced hours.

“She’s basically stuck in the house, and there are no social programs that are viable at this point in time,” Fuehrer explained. “Socialization for her, at this point in time, would be the most ideal thing that could happen.”

Fuehrer said he wished their friends could spend time and visit, but like many others, they are keeping a small social bubble. Their son, Derek, and a home health aide are the only ones coming in and out of the house.

“Other than the phone dialogues, which are a godsend, you don’t get a lot of interaction because people are...we all need to be careful,” Fuehrer said. “We all need to keep our distance.”

More grave consequences

Laurie Archbald-Pannone, a geriatric doctor at the University of Virginia, said staying home to take care of a loved one without much other help can be isolating.

“What we’ve seen in the COVID era is the need for social distancing, which is an important part of infection preventing and decreasing our risk of COVID spread, but that evolving into social isolation,” she explained.

Isolation can have serious health effects, hypertension, heart disease and depression among them. According to the Centers for Disease Control and Prevention (CDC), social isolation can increase the risk of dementia by 50 percent.

There is still a lot we don’t know about the effects of the pandemic on people already diagnosed with or showing signs of dementia before social distancing became routine. Archbald-Pannone emphasized that the effects of isolation and expressions of dementia look different in every patient. Many of the patients she’s met with over the last several months, however, are experiencing an accelerated cognitive decline—they’re deteriorating faster than they were before the pandemic began.

Early pandemic research reveals a story even more grave. According to an analysis of CDC data by the Alzheimer’s Association, there were at least 31,047 more dementia-related deaths through the end of September of last year than average. In New York, deaths due to dementia were 21.4 percent higher than usual and 16.6 percent higher than usual nationwide.

Providing a space to open up

Caregivers are at an increased risk of isolation, too. Many who used to get help now face responsibilities alone. Archbald-Pannone said it’s equally important for geriatric clinicians to check in with the caregiver and see how they are balancing all of the drastic lifestyle changes and needs that have come with the pandemic.

“Their health is critically important in the health of the person with dementia,” she said.

Like Fuehrer, many caregivers lost their in-person support networks once social distancing began. But that doesn’t mean friends and family can’t lend a hand. Archbald-Pannone said even a phone call can provide caregivers the much-needed space to open up about daily challenges.

“It’s okay, as the caregiver, to have challenging days and to admit that things are hard,” she explained. “It’s important to know that to be able to build that support and that community around, even if that community can’t physically be in the same space together but to still have those connections.”

It can be hard, Fuehrer said, to reach out to friends when days consumed by work and caregiving are long and challenging. Still, it’s a godsend when friends call him. They often help diffuse situations when Karin’s on the cusp of what Fuehrer called a “moment.”

Recently, one of Karin’s close friends called right around the time she was starting to get worked up.

“By the fact she talked to her friend, it diffused everything,” Fuehrer said. “It was a total redirect and it was like the most absolute perfect time that she called.”

They bantered and laughed for around 45 minutes. Daily tasks are harder for Karin, but her memories are still there.

“Karin’s on board and she knows who that person is,” Fuehrer said. “It’s not like she forgot the person. It’s just that we don’t see anybody.”

But it does not take seeing someone in person to have a connection. Video and phone calls, Archbald-Panonne said, can be just as helpful.

“Those meaningful relationships and connecting directly with other people is really at the core of what’s important,” she added.

The Fuehrer's friends are helpful in a lot of ways. He just wants to be able to sit down with them, once again, and enjoy those shared moments you can only have in person.