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Alzheimer's disease claimed more lives in 2020: How COVID-19 may have contributed

More New Yorkers with Alzheimer's died in 2020 than past years. Experts believe the increase is linked to the COVID-19 pandemic.

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In the months before he died on April 15, 2020, 92-year-old Frank Cassidy was an active resident at Susquehanna Nursing Center in Johnson City.

Leaning slightly forward in his wheelchair, his heels pressed into the floor, he'd propel himself up and down the hallways of the facility.

In the advanced stages of Alzheimer's disease, Frank nonetheless preferred to journey outside his room when he could, visit with his children or relish a nighttime treat of ice cream.

On a Wednesday in March 2020, everything in Frank's life changed abruptly. 

Frank Cassidy, 92, died at Susquehanna Nursing Center April 15, 2020.
Frank Cassidy, 92, died at Susquehanna Nursing Center April 15, 2020.
Photo provided

Visitors were told the leave the facility. Staff put on masks and protective gear. Residents were confined to their rooms. Frank was no longer allowed to move freely through the halls.

A year later, experts have pointed to the changes brought on by the COVID-19 pandemic as a potential parallel to the near-19% increase in Alzheimer's or dementia-related deaths in New York. These patients, experts say, are more medically fragile in general and can have difficulty following safety protocols. Many of them live in long-term care facilities, which have been hotbeds of virus outbreaks.

And as COVID ripped away the security of everyday routines and the companionship of family and friends — things that are especially important for Alzheimer's patients — these vulnerable seniors became even more so. 

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Increased dementia deaths and COVID-19

Dementia does not increase the risk of contracting the virus, but people living it often have underlying chronic conditions putting them at higher risk of contracting, and at greater risk of dying from COVID-19. 

Dr. Sharon Bragman
I’ve seen people get COVID and get sick because they have a lot of medical problems.. But I've also seen people who’ve had a decline because they’ve had a change in their routine.

According to a report released by Alzheimer's Association, there were 2,210 more deaths, an 18.8% increase, in New York from Alzheimer’s and dementia in 2020 than the average death toll over the previous five years.

Other factors the organization believes could be driving the increase include pandemic-related challenges that could have accelerated disease-related decline.

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"We’re still learning of the effects of the pandemic and our experience over the last year has had, particularly for individuals living with Alzheimer's disease because we know that social connectedness is so important for all of us," said Cathy James, Alzheimer's Association Central New York Chapter CEO. "When we look at lowering our risk factors for things like cognitive impairment, we know that physical and social connectedness is part of the equation.

"So for those with Alzheimer's and dementia, those routines, that connectedness with each other, with family members, when that just suddenly stops, that certainly has caused these dramatic changes we have seen."

Dr. Sharon Bragman, the chairwoman of the Department of Geriatrics and director of the Center of Excellence for Alzheimer's Disease at Upstate Medical, said she's seen her patients become what she calls "direct or indirect collateral damage" from COVID-19.

"I’ve seen people get COVID and get sick because they have a lot of medical problems," she said. "But I've also seen people who’ve had a decline because they’ve had a change in their routine. There have been so many reasons why we have seen declines this past year."

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Many people living with Alzheimer's or dementia might not understand the concept of social distancing, more frequent hand washing or wearing a mask, she said.

Those living in long-term care settings — around 40% of residents in nursing homes and assisted living facilities have Alzheimer's or dementia, according to the report — are "extremely vulnerable" to COVID-19.

More than 13,000 New York nursing home residents have died of COVID-19, either in the home itself or in a hospital. And the number comes to 15,000 when other long-term care facilities are included.

'COVID has changed everything'

Last March, Catherine Cassidy was driving to a hospital near Santa Barbara the same day schools across California closed. A 20-year hospital nursing veteran, she had just left a job as a school nurse — the kids weren't in school enough for her to justify staying — for a position as a traveling nurse, and would spend the next year parachuting into small-town hospitals across the state.

Catherine Cassidy
The whole process of mourning my father’s death has become an individual thing, as opposed to a normal one which would be a group thing. You feel more isolated.

As the weight of the sweeping COVID-19 virus bore down on every community, Cassidy, 59, spent many shifts at the bedsides of dying patients, serving as a substitute for the loved ones who weren't allowed inside. 

At home, she fielded phone calls from Susquehanna Nursing Center, who provided updates on her father, Frank Cassidy. She shared the latest news with her four siblings, none of whom had seen him since the facility closed its doors to visitors.

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Frank had tested negative for COVID-19, but he wasn't doing well. Catherine knew his routine had been disrupted. That, combined with the social isolation, had likely diminished the spirit of the patient but persistent man who was her loving father, a reliable accountant in his working days and a good neighbor always. 

Frank Cassidy, 92, died April 15, 2020 with Alzheimer's. Cassidy's health declined when the pandemic prompted social restrictions and routine changes inside the nursing home where he lived.
Frank Cassidy, 92, died April 15, 2020 with Alzheimer's. Cassidy's health declined when the pandemic prompted social restrictions and routine changes inside the nursing home where he lived.
Photo provided

Catherine spent the year watching other people's loved ones die. But on the day her own father died, she wasn't at his bedside.

There were no calling hours, no funeral. Frank was buried beside his wife, Helen, in a Pennsylvania cemetery. Catherine wasn't there for that, either. She watched the service on a screen at home, in between hospital shifts.

"The whole process of mourning my father’s death has become an individual thing, as opposed to a normal one which would be a group thing," she said. "You feel more isolated."

Caring for Alzheimer's caregivers

Cathy James says that when COVID replaced in-person support groups with phone calls and Zoom chats, caregivers and family members like Catherine increasingly turned to the Alzheimer's Association's helpline. 

Frank Cassidy, 92, died April 15, 2020 with Alzheimer's. Cassidy's health declined when the pandemic prompted social restrictions and routine changes inside the nursing home where he lived.
Frank Cassidy, 92, died April 15, 2020 with Alzheimer's. Cassidy's health declined when the pandemic prompted social restrictions and routine changes inside the nursing home where he lived.
Photo provided

Support services like adult day care and senior centers have closed their doors due to the pandemic, eliminating some of the support they provided to those with Alzheimer's and to their caregivers. Trips to museums and parks were replaced by virtual visits. 

Some families caring for elderly parents were simultaneously thrust into their children's new world of remote learning, lost jobs or other resources, all while dealing with the universal fear of contracting COVID-19.

"There were caregivers dealing with extreme challenges even beyond the realm of Alzheimer's disease and dementia," James said. 

Support systems and counselors across the geriatric spectrum adapted. They found ways to get groceries to elderly patients living in rural communities. They tried to help set up vaccine appointments for those who didn't know how to use the online registration form. They talked to caregivers and shared their frustration.

Dr. Sharon Bragman
I think that we as a society have to decide what we think is the best way to take care of frail older adults. This is our future selves in a lot of ways.

Bragman believes the elderly have been ignored. They're in the margins, she says, and in situations like a global pandemic, "people in the margins lose out."

"I think that we as a society have to decide what we think is the best way to take care of frail older adults. This is our future selves in a lot of ways," Bragman said. "The system that we had before was piecemeal and not efficient and that just got really, really highlighted during the pandemic."

Frank Cassidy's family will hold a memorial for him at some point. They'd hoped to have it last summer, but the pandemic persisted. Maybe this summer. Hopefully soon.

Until then, Catherine Cassidy will just be patient, like her father.

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