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New York home care shortage’s impact on dementia caregiving: ‘It takes so much out of you’

Steve Henderson and Karen Eichelberger pose for a photo at their Chautauqua County home on April 27, 2022. Eichelberger gets some professional home care for Henderson, who has Lewy body dementia, but needs more. Credit: Tom Dinki/WBFO News
Steve Henderson and Karen Eichelberger pose for a photo at their Chautauqua County home on April 27, 2022. Eichelberger gets some professional home care for Henderson, who has Lewy body dementia, but needs more. Credit: Tom Dinki/WBFO News

WBFO - Karen Eichelberger cooks turkey burgers for her husband, Steve Henderson, on a spring weekday afternoon.

Henderson, 72, had asked for a turkey sandwich, but they didn’t have any, so Eichelberger, 65, suggested a turkey burger instead.

“Is that OK?” Eichelberger asked.

“Sure,” Henderson said.

They live in a two-bedroom farmhouse not far from Chautauqua Lake. They have over two acres of land, where they keep three alpacas and some chickens. A creek runs behind the property.

They moved there in 2014 from Long Island. Eichelberger is a retired environmental analyst, Henderson, a retired park ranger, so finding a home where they could enjoy the outdoors was important.

“I love the land. We're close enough to other areas that I know, and my mother lives on the other side of the lake,” Eichelberger said. “This is the closest thing we have to home. It has become our home.”

But living in a rural area means finding home care aides for Henderson is all the more difficult. He has Lewy body dementia, which can affect both memory and mobility.

Henderson’s approved for 80 hours of home care a week under New York’s Medicaid program, but in late April, Eichelberger said she could only find aides to cover about 15 to 20. Plus, the only medical Adult Day Care program in Chautauqua County, Warner Place in Jamestown, closed down during the COVID-19 pandemic and never reopened.

“It takes so much out of you to be taking care of anybody, but a dementia patient who is changing all the time, it's just so hard,” she said. “It takes so much.”

And finding home care aides for New Yorkers living with dementia may only get more difficult in the years to come.

New York has the largest home care aide shortage in the nation, according to the Alzheimer’s Association's annual report. At the same time, the report found, the number of New Yorkers living with dementia will increase 12% over the next three years.

“I mean, if we can't support the folks that are currently diagnosed and currently living with the disease, the fact that that number is growing is really worrisome,” said Andrea Koch, director of education and training for the Alzheimer's Association of Western New York.

‘Sometimes caregivers pass away before the person with dementia’

There were 437,000 home health and personal care aides in New York in 2018. But, according to the Alzheimer’s Association's2022 report, the state will need 60% more to meet the demand by 2028.

No other state is expected to need even a 50% increase.

“So that's a huge gap that we're going to have to fill,” Koch said.

And that’s to say nothing of the need for home care aides who are specialized in helping dementia patients. New York isone of just thirteen states to require dementia training, but the2007 law sets no requirement for hours.

“Whether those staff have the training that they need is a bit of a free for all, unfortunately,” Koch said.

The lack of home care aides can even impact the health of family caregivers. Studieshave shown dementia caregivers report more physical and mental health problems than other kinds of caregivers.

“Sometimes we see caregivers pass away before the person with dementia because they have put their own care on the backburner,” Koch said.

Eichelberger said she’s had to put off her own medical appointments to take care of her husband.

“If I don't have an aide here, and I get sick, I'm out of luck,” she said. “I'm very fearful that something will happen with me, and then I won't be able to take care of him or myself.”

State will increase home care wages, but will it be enough?

New York spends more on Medicaid coverage for dementia patients than any other state, over five billion dollars in 2020.

Yet New York home care aides currently only make the state’s minimum wage, $13.20 an hour upstate.

“We don’t pay them enough. We don’t value them enough,” said Dr. Bruce Troen, chief of the Division of Geriatric and Palliative Medicine at the University at Buffalo. “They're put on the front lines — think about the pandemic — in a manner that puts them and others at risk.”

The state budget passed earlier this year increases home care aides wages by $3 over the next two years, although advocates had hoped for a $6 increase.

State Sen. Sean Ryan, a Buffalo Democrat and member of the Senate Health Committee, said “there’s never enough money” for everything lawmakers want, but they’re hopeful the increase will close the gap.

“And if we don't close the gap, we can study it and go in next year,” he said.

The wage increases don’t start until October, so Eichelberger, in the meantime, is paying her aides$1 more an hour out of her own pocket.

It seems to be working. As of recently, Eichelberger has employed enough aides for Henderson to get about 40 of home care a week. He’s even trying out a non-medical adult day program.

Eichelberger said she’s grateful, but that there’s no guarantee how long this help will last.

“Because at any time, their lives could change, and they won't be able to work,” she said. “I don't know yet whether I'll be able to find somebody else. I don't know.”

Eichelberger has thought about moving herself and Henderson to the Buffalo area where more support may be available. But she thinks having their own land is good — for both of them.

“I even put an extra porch on our house because he needed to be outdoors,” she said, “and I needed to be outdoors with him.”