When you are old and gray and full of sleep and nodding by the fire — whom do you expect to help take care of you? Family? Friends? Paid aides? All of the above?
The nation’s caregiving work force is fraying. Paid providers are overworked and undervalued, often forced to take on multiple jobs or turn to public assistance just to scrape by. Many family caregivers are struggling as well, sacrificing their own health and well-being to tend to loved ones for years on end. Consistent, skilled, affordable care is in short supply — and getting shorter — and those who provide it are shouldering an increasingly unsustainable burden.
Women, who do most of this caregiving, are being hit the hardest. The industry relies heavily on women of color, who make up about half of the paid work force, and on immigrants. Around one in four caregivers was born outside the United States. Just something to remember the next time certain politicians start screeching about the scourge of immigration.
But the widespread disrespect for and neglect of this work ultimately hurts everyone. “We can’t have a strong economy if we have millions of people working as full-time care givers and making so little that they are still living in poverty,” Gina Raimondo, the secretary of commerce, told me in a recent interview. “We can’t have a strong economy when we have millions of other people dropping out of the work force to take care of elderly loved ones.”
There are currently around 4.6 million direct care workers in the United States, a category that includes home health care aides, personal aides and nursing assistants. Over the next decade, the demand for these workers will balloon as aging baby boomers require more, and more advanced, care. Despite this, the industry’s pay is a scandal. For home health and personal care aides, the average wage is $13.49 an hour — below the average hourly wage of an employee at Chipotle. Around 15 percent of direct care workers live in poverty. The work is hard, stressful and dangerous, with high rates of injury. Caregivers often receive minimal training and have few opportunities for advancement. The field is plagued by chronic labor shortages and high turnover.
The shabby state of the paid work force is only part of the picture — and a comparatively small part. The open secret of America’s long-term care system is that most of the labor is provided by unpaid family members or friends. Nearly 42 million U.S. adults are providing informal support and services to someone age 50 or older, according to a 2020 report by the AARP.
Even as a labor of love, this work takes its toll. Family caregivers incur thousands of dollars in out-of-pocket expenses each year, for everything from shampoo to home modifications to transportation costs. This is in addition to an average of more than $5,000 a year in lost wages. Around a quarter of family caregivers are forced to take on more debt, the AARP has found. More than one in 10 report being unable to afford basic needs such as food.
There are harder-to-measure costs as well. Numerous studies have examined the psychological and physical strain of caregiving. Caregivers appear to be at increased risk of a host of serious illnesses, from heart disease and high blood pressure to cancer and infection. Depression and anxiety are common. The coronavirus pandemic has exacerbated existing stressors — and created plenty of new ones.
Worse, even as the number of seniors needing long-term care expands, the number of family members available to provide that care is contracting — a consequence of baby boomers having fewer children than their parents. This means more pressure and less help for everyone, with no relief in sight.
This is not a uniquely American challenge. Japan, with the world’s oldest population, has a term for the stress and exhaustion of family caregivers: kaigo jigoku, or “caregiving hell.” To help relieve some of the pressure, Japanese lawmakers passed a long-term care insurance program in 1997. The U.S. Congress seems unlikely to follow suit any time soon.
But with a problem of this magnitude, the federal government needs to step up. President Biden has called for a major investment in the caregiving economy, pieces of which have been written into legislation. Under the Better Care Better Jobs Act, for example, states would receive additional Medicaid funding for taking steps to shore up the “infrastructure” necessary to improve the access to and quality of home-based care: increasing the wages and benefits of direct-care workers, improving training standards, easing access to respite services for family caregivers and so on. The Social Security Caregiver Credit Act would, as the name suggests, provide retirement compensation for people who left their jobs to look after family members. And the AARP has been pushing for the bipartisan Credit for Caring Act, which would provide federal tax credits to eligible family caregivers. Mr. Biden’s American Families Plan also called for 12 weeks of paid family and medical leave, an idea that should have been embraced long ago.
Family caregivers contribute at least $470 billion worth of free labor to the economy each year; it’s time they got at least a sliver of relief in return.
Policy experts and decision makers can debate the details, but America needs to stop taking its caregivers for granted. Paid or unpaid, these workers are looking after our mothers and grandfathers, our sisters and uncles. They assist in dressing, bathing and feeding some of the most vulnerable among us, helping them cope with the aches and pains and fears and frustrations of growing older. They deserve better than to be casually abandoned. It’s worth remembering that many of us will eventually find ourselves among their ranks.
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