AARP survey: More Long Islanders serving as caregivers for adult relatives

AARP survey results released Thursday show that more than 4 in 10 voters 40 and older living on Long Island have served as a caregiver for an adult family member.

Among the survey’s other sobering if unsurprising findings: those who shoulder the responsibility say it’s difficult and expensive, and they would like help.

“Some of these people are making a decision to care for loved ones and taking a hit financially in the short term,” said Terri Guengerich, an AARP researcher who worked on the survey. “There’s a problem when it gets to a point that it’s too much, and they can’t balance work and family.”

AARP released the survey along with a list of budget priorities for New York State’s long-term care system, including reversal of what it said was a $200 million Medicaid cut to long-term care in Gov. Kathy Hochul’s proposed budget. Hochul’s office did not immediately respond to a request for comment.

For Long Island, with a population older than that of the state overall, the survey's findings take on added weight. The portion of Long Islanders 65 and older grew from 14.3% in 2010 to 18.1% in 2020, according to census data released last year. The region's population as a whole also skewed older, with the median age rising from 40.4 to 42 over that time, according to the census data.

Geoffrey O’Connell, a Stony Brook Medicine social worker, said AARP’s findings highlight the lack of professional and affordable care for the elderly on Long Island and some of the reasons why it's scarce. 

Chief among them, “a shortage of paid caregivers in home health care agencies, especially agencies that are paid by Medicaid,” O'Connell said. “It gets worse the further east you go … on the Twin Forks it can be basically impossible.”

In some cases, he said, families unable to find paid home care turn to nursing or assisted living homes, incurring bills that may reach $10,000 per person per month.

Nationwide, the census data showed, between 2010 and 2020 the 65-plus population grew faster than it had in any decade since the period from 1880 to 1890 and now comprises 55.8 million people, or 16.8% of the population.

AARP surveyed 1,345 registered New York voters aged 40-plus in phone conversations last year. The survey included 239 Long Islanders.

About 62% of Long Islanders who told the survey they cared for an ailing adult family member were women. Overall, the respondents were likely to be caring for their parents, married, and also juggling work.

Among the employed, about three quarters told the survey they had adjusted their work schedule, while 27% of Long Islanders said they had taken a leave of absence and 24% responded that they had gone from working full-time to part-time. More than a fifth of the respondents said they had given up working entirely so they could care for a family member.

The survey found that these Long Island caregivers paid a financial and emotional toll. Almost all said they had incurred some expense while providing care, from transportation costs to home modifications, medical equipment or hiring home health aides.

About 69% of respondents said they felt stressed balancing work and family. Another 42% said they felt financially strained. Given the choice between financial support that would help cover caregiving costs or support that gives them time to do other things, most caregivers chose the money.

Together, the findings show “how many people are stressed and spending their own money to care for someone else,” Guengerich said. “They don’t think state government is doing enough for them.”