They all faced some sort of isolation this year due to COVID-19. But for those living with different forms of dementia, isolation can take a much bigger toll.
“He has Lewy body dementia,” Jaye Kephart explained. She takes care of her husband, Michael, who was diagnosed with this form of size five years ago. The disease can cause hallucinations.
“I know Lewy’s body is progressing,” he said. With safer home orders in place, people like Kephart and her husband were forced to stay mostly at home, which she said made her hallucinations worse.
“I have no doubt it’s COVID, plus it sleeps a lot more. Why not, he’s bored, ”he said.
Many caregivers are seeing the same thing: a faster decline which they attribute to greater isolation.
The Washington Post analyzed federal data, which showed that more than 134,000 people have died of some form of dementia since March, about 13,000 more than expected.
“That’s exactly what I see with the families I work with. I think caregivers feel a little hopeless and stressed out because sometimes they have a hard time trying to understand, what can I do to make it better? “Said Jill Lorentz. She has worked with health care professionals and people with dementia for over two decades.
“I think the whole thing is just a perfect storm,” he said. Lorentz also has eight family members who have some kind of dementia, currently helping take care of his sister.
Social stimulation and routine are two ways that caregivers help slow decline – and this can be done from home to some degree.
“Allow them to be part of the process and use them as pieces of engagement and not as normal daily activities that are a little crazy. You don’t realize you can use it as something in a routine that could be meaningful to that person, ”Lorentz said.
“I still give him everything I can. Unload the dishwasher and load it, ”Kephart said.
But for those living in a facility, the stimulation is even more scarce.
“I think there have been more people in communities who have died from the loneliness of not being able to see or touch their family members, then there have been who actually have the COVID diagnosis,” Lorentz said.
“We are asking people to create plans to make sure they are fighting social isolation as they are fighting COVID right now,” said Amelia Shafer.
He is the executive director at the Colorado Alzheimer’s Association. He said caregivers should make a plan to participate in virtual support groups to help their loved ones with dementia, but they should also focus on their own health.
“It was no surprise to us that people felt isolated, that people felt depressed,” Shafer said.
“People are dying at higher rates, especially people with dementia, and they feel like they’ve had a huge loss. Everyone around them feels that loss too, but it’s different because 90% of what they feel is energy. So if they feel the sadness of their caregivers and the sadness of the world, “Lorentz said.” I think this is somehow a painful problem.
“It certainly isn’t having a partner like I did, I’m a keeper,” Kephart said.
The Alzheimer’s Association has a 24/7 hotline that offers support and help for healthcare professionals, family members and those living with the disease at 800-272-3900.