People Living With Dementia Can Face Further Isolation During Pandemic

Apr 30, 2020

In pandemic times, we’re all forced into our singular places, whether we enjoy being there or not. That can mean so many different outcomes for us as humans. For elders, who often face a greater risk of the effects of COVID-19, a prolonged period of social isolation can be tough.

For Chuck McClatchey, life has changed. He is a former flight engineer for the U.S. Air Force who lives with dementia. McClatchey usually gets out of the house quite often, especially to check in with his neighbors, who live in an apartment complex for people who are 55 and older.

“Social interaction is so important, you know, not only [for] people like me,” McClatchey said. “But also with elderly people, because they may not be able to see anybody at this time for days at a time, and that isolation is not good.”

McClatchey was diagnosed with early-onset dementia six years ago, at 61. He said he makes sure to keep his life active, while continuing to do everything that he’s always loved to do. This includes going to shows and walking the Las Vegas Strip near his Southern Nevada home.

He also considers himself an advocate. He speaks publicly at events about living with dementia and hosts a podcast on the same subject. McClatchey said he does this podcast and all the public speaking, not only for people who have been newly diagnosed, but also to help himself.

“It keeps the gray matter between your ears busy,” McClatchey said. “I have good days and bad days. When I do something wrong or I forget a word in a middle of a sentence, I just kind of accept it: it's progressing. But to me, it's not progressing that fast.”

But in the past few months, life has shifted indoors. And not just for McClatchey— for everyone.

“We’ve basically been doing nothing ... Which is really sad because probably the majority of people living in this apartment complex are single, so they really don't have hardly any [interaction] with anybody except maybe walking down to get the mail,” McClatchey said. “So it's really kind of frozen people in time.”

The pandemic is causing all sorts of hurdles, in particular for people who are living with dementia that’s in its later stages — while alone.

“The managing of the household during the pandemic is even more difficult because how do I get my food?” said Elena Portacolone. She studies the circumstances of people living with cognitive impairment or changes at the University of California, San Francisco. She said the pandemic has brought up a lot of questions among some of the people in this community.

“How do I cook? And how do I pay my bills? The people that usually might be available may not be available,” Portacolone said.

Having limited access to accurate information presented in their own language can be another challenge for this population, according to Portacolone.

“You also have to think about the language, the fact that some [people may not] speak English, so it is maybe difficult to understand exactly what is going on,” Portacolone said. “Or [they] may not get the right news. So the news also tends to be quite scary. So it's easy to get really worried.”

People living with dementia already tend to face the effects of stereotyping from people who don’t know the complexity of the disease, according to Jennifer Carson. She is the director of the Dementia Engagement, Education and Research Program at the University of Nevada, Reno.

“I think even prior to COVID-19, our society tends to be ageist and ableist,” Carson said. “Those two forces really come together as a double whammy for people who are living with dementia. And so people who are living with dementia do have this experience of being cut off from their communities. Just by virtue of having a diagnosis because there's so much stigma and so many misunderstandings that surround a diagnosis of dementia.”

Carson said that’s one of the reasons the university is coordinating with other government aging services to run the Nevada COVID-19 Action Network, which provides free opportunities for communication online and over the phone for elders, plus other kinds of living assistance, like food and necessities delivery. This connects them to volunteers to check in and form a cordial relationship with a volunteer, connect with others seeking friendship, or reunite current friends in a new format.

“I think one of the greatest misconceptions is that people who are living with dementia can no longer meaningfully communicate. And that's just not true,” Carson said. “People who are living with dementia can and do meaningfully communicate, even into the later stages of the disease.”

The way that McClatchey has chosen to use his time during the pandemic is to create opportunities to connect with others. He’s checking in with his neighbors, recording new podcast episodes, and leading zoom meetings with other people who are living with dementia, to support each other. He said even though he’s intending to help others, it’s really helping him, too.

"It makes it a little more difficult because there's no person-to-person meetings. I enjoy going to conferences and talking to people and meeting people so, you know, all of that's kind of on hold,” McClatchey said. “Even with the the stay at home order and stuff, luckily I have computer and I have a phone, so I can still do what I enjoy doing.”

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