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The Quiet Cost of Family Caregiving

At first, Dana Guthrie thought she could help care for her parents, whose health was declining, and still keep her job as an administrative assistant in a busy dental office in Plant City, Florida.

“It was a well-paid job and I didn’t want to lose it,” Ms Guthrie, 59, recently recalled. So she tried to switch to a four-day schedule, working evenings to meet the demands of the office, and began spending a few nights a week at her parents’ house instead of near her.

But eventually her mother’s liver disease progressed and her father was diagnosed with dementia. The family found that the cost of hiring domestic helpers for two sick 82-year-olds was even higher than a middle-class retirement income and savings. “They really needed me,” Mrs. Guthrie said. In 2016, she left her job “and moved full-time”.

An estimated 22 to 26 million US adults currently provide care for relatives or friends, mostly elderly, who need help with daily activities; more than half of these informal carers have a job. “There’s no question that it can be very difficult to juggle those two,” said Douglas Wolf, a demographer and gerontologist at Syracuse University.

Carers who are salaried employees often reduce their working hours or leave the workplace altogether, according to research. However, several recent studies reveal the impact of these decisions in more detail, not only for working caregivers, but also for employers and the general economy.

Yulya Truskinovsky, an economist at Wayne State University, and her co-authors combined data from a Census Bureau survey with Social Security data to follow unusually long work trajectories for nearly 13,000 people.

Among those who became caregivers, employment dropped nearly 8 percent compared to demographically similar non-caregivers, the authors found. “It happens right away, in the first year,” said Dr. Truskinovsky. “We see little evidence that they are either working fewer hours or switching to self-employment. They leave the workforce and stay out of it for a long time.”

She added: “Younger carers are just as likely to leave the workforce as older ones.” Seven years later, the study found that those informal carers had not returned to the level of employment of demographically matched non-informal carers.

In addition, there were significant sex differences between those who left the workforce.

Men started reducing their workload long before they became caretakers; then “they leave the workforce and don’t come back,” said Dr. Truskinovsky. The investigation was unable to provide an explanation; perhaps men will take care of them when their work is already coming to an end.

In contrast, female caregivers leave the workforce more abruptly and are more likely to return — after just two years on average — “but at lower wages or fewer hours,” said Dr. Truskinovsky.

The pandemic exacerbated the conflict between work and care, Dr. Truskinovsky and colleagues in another study. “The care arrangements are very fragile,” she noted. While families often combine paid and unpaid care, “it’s unstable, and if one thing doesn’t go through, your whole arrangement falls apart.”

In a nationwide sample of over-55s, half of informal caregivers reported that: Covid-19 had disrupted their care schedules, forcing them to provide more care (because paid help was no longer available) or less (due to quarantines and fear of transmission). More than a third were employed before the pandemic.

Caregivers faced with disrupted arrangements were more likely to be on leave or losing their job; they also showed much higher rates of depression, anxiety, and loneliness than non-caregivers or caregivers who experienced no disturbances.

The toll of working informal carers takes many forms. Susan Larson, 59, a specialist in education services for the United States military, has declined promotions even when her superiors urged her to apply. “I’m not geographically mobile,” she said.

She can’t leave her home in St. Paul, Minnesota, where she and her husband built a handicap-accessible addition for her mother, 83, who needs extensive assistance. The military has been very supportive, said Dr. Larson. But she estimated that her salary would be nearly 25 percent higher if she accepted promotions, which in turn would bolster both her eventual retirement and her Social Security benefits.

Shawn French, 51, a video game writer in Limerick, Me., and his wife welcomed her widowed father into their home three years ago. Because Mr. French works remotely, he can help his father-in-law with meals, medicines and mobility; his wife does doctor visits and other duties.

“I wouldn’t want it any other way,” Mr. French said. But the stress prompted him to give up weekend freelancing that had brought in $200 to $300 a week. “We relied on it when things were a little tight,” he said. His wife also reconfigured her work schedule, leading to him being dropped from her health plan and becoming uninsured.

Even if caregivers keep their jobs, another recent survey shows, nearly a quarter report either missed work (absenteeism) or reduced productivity (known as presenteeism).

Presenteeism is responsible for most of the productivity loss, said senior author Jennifer Wolff, a gerontologist and health services researcher at Johns Hopkins University. “Absenteeism is visible, presenteeism is less so,” she says. “You show up, but you call the doctor or manage the insurance.”

Among the affected workers, labor productivity fell on average by a third. Based on 2015 data, the most recent available for adults age 65 and older, this equates to a loss of $49 billion per year.

Paid family leave, while better suited to the more predictable needs of new parents, can also help elder care workers. When California took paid leave, which took effect in 2004, nursing home stay rates fell by about 11 percent, Dr. Wolf of Syracuse and his co-author Kanika Arora.

While the study couldn’t pinpoint the reason, Dr. Wolf that “the change in the law pushed people to stay in work, but they took enough time off work to keep their parents out of a nursing home.” The authors’ more recent work shows that paid sick leave also helps to increase informal care.

President Biden campaigned for an ambitious care plan that would provide 12 weeks of paid family leave each year, plus tax credits to offset health care costs and Social Security credits for time caregivers spend outside of the workforce. Republican opposition in the Senate has blocked its passage.

The discussion about the best support for informal carers will continue, but there is little discussion about their need for help. While many workers can handle the more predictable needs of aging parents and spouses, some face intense pressures incompatible with today’s workplaces.

After Mrs. Guthrie’s parents passed away, she moved to Radcliff, Ky., where her sister lives. She found a job at dental offices there, but could never match the compatibility or salary of the job she left in Florida.

Ms Guthrie is currently unemployed and has been interviewing for a job. She wondered if she’ll ever be able to retire, though she doesn’t regret the sacrifices she made to take care of her parents.

“We were a close family and I would do it again in a heartbeat,” she says. “But I took a beating, emotionally and financially, and I haven’t really been able to recover.”