Serious illness in America carries a kind of moral virtue—one that ennobles the victim of a medical tragedy—but we still view the frailty of old age as a pitiable curse. For all the advances in modern medicine and technology, most of us will require assistance in our latter years to carry out the basic tasks of living. “We need help, often for long periods of time, and regard that as a weakness rather than as the new normal,” writes surgeon and author Atul Gawande in Being Mortal.
We have yet to adjust accordingly. As Gawande explains, countries like the U.S. are no longer full of large, multigenerational families who can swoop in and provide that help. The bulk of caregiving for the elderly, ailing, and disabled is still carried out by family members, who help their relatives with everything from bathing and dressing to preparing meals and managing medication. It’s decidedly unsexy, sometimes grueling domestic drudgery, mostly carried out by women who are hard-pressed to juggle these responsibilities with work and childcare—the so-called “Sandwich Generation” stuck between aging parents and kids. “It’s an invisible workforce,” says Carol Regan, a senior adviser and long-term care expert at Community Catalyst, a national health advocacy group.
That’s why it’s fairly remarkable that family caregiving has come up in the 2016 campaign at all. All three Democratic candidates have offered some form of support to Americans who take time out of the workforce to care for ailing adult relatives, with Hillary Clinton unveiling her plan last week. It’s the first presidential race in recent memory where leading candidates have highlighted the need to support caregivers for elderly and disabled family members—a shift that reflects not only a focus on family-oriented economic policies, but also the huge demographic changes on the horizon. About 12 million Americans, or 4 percent of the population, currently require long-term care—a number that is expected to more than double by 2050.
The policy solutions that Democrats are proposing are undeniably modest, given the scope of the problem. Clinton recently called for a new tax credit to help family caregivers who assist adult relatives who are elderly, disabled, or chronically ill; it would help offset up to $6,000 in annual expenses tied to caregiving. Her plan also includes an expansion of Social Security that would allow those who take off time from work for family caregiving to earn credits for their Social Security benefits. Neither Bernie Sanders nor Martin O’Malley have come out in support of the tax credits, but both candidates support the expansion of Social Security for family caregivers. (Shockingly, there’s been radio silence from Republicans on the topic.)
Clinton is making the most concerted effort to turn family caregiving into a 2016 issue. It fits into her broader campaign strategy to provide concrete solutions for ordinary, middle-class families, particularly through targeted tax credits that could play well in a general election. It’s unclear how much low-income families will benefit, as Clinton hasn’t indicated whether she’ll make the tax credits refundable, or how she’ll ultimately pay for the plan. But she has been raising the issue with frequency: In July, she spoke about the “caregiving crisis” at a New Hampshire town hall, responding to a woman who was caring for her husband and mother, who both had Alzheimer’s. At the time, Clinton was vague about specific solutions but tried to make a personal connection. “My late mother lived with us until she passed away, she was thankfully in good health, but she had some real beginnings of deterioration physically,” Clinton said, though she didn’t specify whether she was personally caring for her mother at the time.
Clinton’s caregiving plan is also designed to appeal to women, who make up about two-thirds of family caregivers. “It’s more economic security for older women who’ve taken time out of the workforce for caregiving,” says Heather Boushey, executive director of the Washington Center for Equitable Growth and an outside economic policy adviser to Clinton. “Older women are more likely to be poor than men and live longer. They don’t earn as much and have as much in Social Security.”
The underlying message is that this unpaid labor has a real value: Clinton pegs the value of family caregiving work at $470 billion per year, which is the AARP’s estimate. Caregiving costs those who are 50 and older to lose an average of $303,880 in wages, pensions, and Social Security due to reduced hours or leaving the workforce early to care for a parent, according to a 2011 study by MetLife and New York Medical College. A majority of family caregivers say their responsibilities have affected their work performance, and 30 percent say they miss six or more days of work because of their caregiving duties, according to a 2011 Gallup survey. Another AARP survey finds that 9 percent have given up work entirely to devote their time to caregiving.
That’s why advocates for family caregivers are lobbying for a more inclusive form of paid leave that includes caring for adult relatives, as well as young children. Both Clinton and Bernie Sanders support paid family leave that includes taking time off for chronically ill relatives. But the topic of elder care rarely comes up in the broader debate around paid leave, which continues to be fixated on working mothers—rather than working parents of both genders, or working children-of-ailing-parents.
“People still talk about it as paid parental leave—we really need to be talking about paid family leave,” says Julie Kashen, senior policy adviser at Make It Work, which advocates for progressive family policies. “Not everyone ’s going to become a parent, but most people are going to grow old.”
There’s no shortage of reasons why we’d prefer to think about caregiving for the young rather than the old. The welfare of children is a full-blown national pastime; they’re a status symbol, a celebrity accessory, and a tabula rasa for the nation’s future. An ailing adult is a reminder of not only our own end, but the entire process of decline, of losing our hard-fought autonomy.
The larger problem, though, is the failure to recognize that there is a need for care in the first place. Many Americans don’t realize that while Medicare covers rehab and short-term nursing stints after a serious illness, the program doesn’t pay for long-term care—and only a small fraction of Americans sign up for private long-term care insurance. If they do need help, it comes at a steep cost: The median nursing home costs $77,380 per year, while home health services cost $45,188 per year, according to one 2014 survey. And most Americans have saved hardly anything for retirement in the first place.
That’s the bigger reason that family members are shouldering the personal and financial burden: There is no safety net for care—the assistance required for day-to-day living—unless you’re poor enough to qualify for Medicaid. The Affordable Care Act originally included a long-term insurance program called the CLASS Act, but it wasn’t financially viable, partly because it failed to attract enough participants.
A real solution would mean either creating a robust private market for long-term care, or creating a mandatory new public benefit, perhaps within the Medicare program itself, according to a blue-ribbon commission that Congress convened after ending the CLASS Act. But either option would come with a big price tag, and even the Long-Term Care Commission ultimately deadlocked over the toughest part—how to pay for it.
None of the Democratic candidates appear ready to make the leap either. Even Senator Sanders, who supports Medicare for all to make health coverage universal, has yet to roll out a sweeping solution for long-term care. (Denmark, unsurprisingly, has universal, publicly financed long-term care.) But advocates for long-term care insurance acknowledge that a comprehensive solution is still a long way off, politically speaking. They welcome the mere fact that the Democrats, particularly Clinton, have made the issue part of the campaign conversation. Clinton’s proposal “does not give us a system for providing long-term services and support, so we need to buck up what we got,” says Judy Feder, a fellow at the Urban Institute and Georgetown professor. But “the issue isn’t so much whether it goes far enough, but that it’s a start.”