Most Americans are struggling to adapt to stay-at-home orders, business shutdowns and social distancing guidelines under COVID-19, but such radical changes can be especially difficult for families dealing with Alzheimer’s disease, who rely heavily on routine. WBFO’s Older Adults Reporter Tom Dinki takes a look at their struggles — and what resources are available to help.
Carol Castan of Orchard Park was diagnosed with Alzheimer’s disease four years ago, yet she has been able to stay relatively independent with a steady routine. The 79-year-old volunteers with her church and maintains a social life.
However, since the COVID-19 pandemic disrupted that routine last month, her daughter, Renee Zureck, has noticed a decline in her memory.
“It's difficult knowing that that probably won't come back once we can be around people again,” Zureck said, “because Alzheimer's doesn't really get better, it just continues to decrease.”
And Zureck, who purchased a house in Orchard Park so she and her mother could live together, no longer gets much of a respite.
“I used to be able to go to work and that would give me kind of a mental break,” said Zureck, who was furloughed from her job two weeks ago, “but that mental break isn't there anymore.”
Experts say routine is crucial for Alzheimer’s disease patients, and respite may be just as key for their caregivers. So New York state’s shutdown can be particularly difficult for the state’s roughly 400,000 residents living with Alzheimer’s, as well as the estimated 1 million unpaid caregivers who look after them.
“There's a lot of different factors coming in with this outbreak that makes it tougher for a caregiver or somebody living with a type of dementia,” said Katie Keith Badeau, director of care consultation for the Alzheimer’s Association of Western New York.
Most Americans are struggling to adapt to changes of life under COVID-19, Badeau said, so it’s only harder for those dealing with cognitive decline from Alzheimer’s or other types of dementia. That’s because they rely on routine.
“Routines help people create structure to the day, and doing the rhythmic of day-to-day-to-day helps those who are struggling to put all the pieces together,” Badeau said. “And then also someone with a cognitive impairment with the symptoms of confusion or memory loss, they might have a harder time understanding the changes going on right now in our county and our region.”
The Alzheimer’s Association website says that dementia itself likely doesn’t increase the risk of COVID-19, the respiratory illness caused by the novel coronavirus, but dementia-related behaviors might.
For example, Badeau said those with Alzheimer’s and other forms of dementia may forget guidance from the Centers for Disease Control and Prevention like washing your hands and not touching your face.
“When you're struggling with memory loss, that's going to be tough,” she said. “I know one family I was working with was trying to get their loved one with dementia to remember to wash his hands throughout the day. He decided to write on his hand: wash me.”
It’s up to family caregivers to make sure Alzheimer’s patients follow guidelines and stay safe, but those caregivers don’t have much relief right now. Respite and adult day programs were shut down last month as part of Gov. Andrew Cuomo’s “New York state on PAUSE” orders.
While visiting nursing associations are considered essential and still operating, some families have chosen to discontinue the service out of fear of spreading the virus.
“So they aren't utilizing those services, even if they are available, like they used to,” Badeau said.
The Alzheimer's Association is offering some free help. While unable to offer care consultations, classes or support groups in person, it is offering what it can remotely. Some of its services, like its 24/7 helpline and pre-recorded online classes, were already available before the pandemic.
“We're grateful because we kind of already had the infrastructure to do this,” Badeau said.
It’s now offering its virtual classes live via Google Hangouts, which allows class participants to chat and ask questions with instructors in real time. Badeau is holding a dementia help desk at noon every Wednesday. Those can all be found at alz.org/CRF.
Their approximately 30 support groups throughout Western New York have also shifted to online by consolidating into several Google Hangouts sessions.
Zureck was part of a daughter's-only group that met at Harris Hill Nursing Facility. After nursing homes had to ban visitors March 13, they moved the meeting to a group member’s house. Then social distancing guidelines made that impossible, too. They now meet remotely via Google Hangouts.
Zureck said that while it wasn’t as good as meeting in person, “it was just nice to see everybody again.”
“Each person has their own qualities that are so helpful in this situation. One person has great ideas, another person is very down to earth and asks good questions,” she said. “So it's great still to get together even though it's online and not in person.”
Badeau said support groups are crucial for caregivers, especially during COVID-19.
“Right now a lot of us are feeling isolated in our homes, and so to have the option of calling up … I think it's hard to feel alone when you're surrounded by people who are living the same thing as you,” she said.