Care Work and Elder Care: What Each Position Is Protecting

There is a woman who has not slept through the night in three years. Her mother — eighty-one, with advancing dementia — lives in the spare bedroom. The woman works a thirty-hour week, negotiated down from full-time so she could manage the morning routine, the medications, the appointments with doctors who are always running late. Her brother, who lives forty minutes away, visits on Sundays. He considers himself equally involved. She has stopped correcting him. When researchers study what they call "the caregiving crisis," they are studying people like her: the roughly fifty-nine million family caregivers who, according to AARP's March 26, 2026 update to Valuing the Invaluable, helped an adult family member, neighbor, or friend with daily activities during the year. The economic value of this unpaid labor — calculated as replacement cost, the wage it would take to hire someone to do the same work — now runs to approximately $1.01 trillion per year in the United States alone. This number does not appear in GDP.

At the same time, the paid care workforce — home health aides, nursing assistants, personal care attendants, adult day workers — is among the fastest growing occupational categories in the country and among the lowest paid. The Bureau of Labor Statistics reported a median annual wage of $34,900 for home health and personal care aides in May 2024, even as the occupation is projected to grow 17 percent from 2024 to 2034. The work is physically demanding, emotionally intensive, often performed in private homes without supervision or formal safety standards. The workforce is approximately eighty-five percent women and disproportionately Black, Latina, and immigrant — a demographic pattern that is not accidental and that critics argue is a structural product of how care work has been valued historically.

The United States has no comprehensive national elder care policy comparable to those of Germany, Japan, or the Scandinavian countries. What exists instead is a patchwork: Medicare covers skilled nursing care in limited circumstances; Medicaid covers long-term care for those who have exhausted their assets; private long-term care insurance, purchased by a small fraction of the population, covers varying amounts for varying periods. The vast middle — people who are not poor enough for Medicaid and not wealthy enough to absorb the full cost of professional care — typically falls on family members. On daughters. On the woman who has not slept.

The debate about how to respond to this situation is not one argument. It is several, running in parallel, often past each other.

In the healthcare cluster, this is the upstream version of the same conflict the end-of-life care map reaches at the terminal edge. That page asks what a society owes when cure is no longer available. This one asks the prior question: who was expected to carry the years of bathing, lifting, paperwork, supervision, transportation, wage loss, and emotional vigilance that came first. By the time a family is facing hospice, the burden has usually already been distributed. The real disagreement starts much earlier, in ordinary days that do not look like public policy even though they are where public policy lands.

What family obligation and private care advocates are protecting

The genuine, irreplaceable value of intimate care provided within families — and the concern that treating care as a market or government service undervalues the relational fabric that makes care meaningful rather than merely functional. The most serious version of this position is not an argument against supporting caregivers. It is an argument about what care is. Atul Gawande, in Being Mortal (2014), documents how medicalized elder care — nursing homes organized around safety and efficiency rather than meaning and relationship — often fails patients on the terms they themselves would choose. People near the end of life, Gawande argues, typically want continuity, presence, and the company of people who know them — not optimized medical management. Family caregivers provide something that professional care markets struggle to replicate: the history of a relationship, the knowledge of a person's preferences that does not need to be documented in a chart because it was never transactional to begin with. Conservatives and communitarian thinkers — Robert Nisbet, Mary Ann Glendon, more recently Patrick Deneen — argue that strong families and intermediate institutions are not just efficient providers of care but constitutive of a decent society; when the state absorbs care functions, it tends to weaken the non-state institutions that provided them. What this position is protecting is not the status quo of caregiver exhaustion. It is the argument that the solution lies in supporting families rather than substituting for them.

The subsidiarity argument that care decisions are best made by those closest to the person receiving care — and the concern that bureaucratic or professional care systems tend toward standardization in ways that harm the people they are designed to help. Anyone who has tried to navigate a nursing home's visiting policies, a Medicaid documentation requirement, or a hospital's discharge protocols on behalf of a family member has encountered the distance between professional care systems and the people inside them. This experience is not universal — some facilities are excellent — but it is common enough that the argument for family-centered care draws on real evidence. The Program of All-inclusive Care for the Elderly (PACE), which integrates medical and social services to keep frail elders in communities with family involvement, consistently produces better outcomes on quality-of-life measures than institutional care. Advocates argue that this reflects a structural truth: care is more effective when it is embedded in relationships rather than delivered as a service.

What care worker rights and labor advocates are protecting

The argument that "love" and "calling" have been used to justify poverty wages for care work — and that the devaluation of care labor is not a natural market outcome but a political and historical choice with a clear beneficiary. Ai-jen Poo, the founder and director of the National Domestic Workers Alliance, has argued for two decades that the exclusion of domestic workers — including home care workers — from the protections of the National Labor Relations Act was not an accident. It was a deliberate legislative choice made in the New Deal era to preserve the low-wage labor force in Southern states; the domestic and agricultural worker exclusions followed the racial geography of Jim Crow. The consequences of that exclusion compound over time: workers who cannot organize cannot bargain for wages, cannot establish safety standards, cannot challenge deactivation or retaliation. States that have extended labor protections to domestic workers — New York in 2010, California in 2013, and a growing number since — have done so over the objection that the costs would be prohibitive. What care worker advocates are protecting is the principle that work has value whether or not the people performing it are socially powerful enough to demand recognition for it. They are also protecting a workforce — real people in specific circumstances — from the argument that their work is a labor of love and therefore the normal rules do not apply.

The direct care workforce crisis: the argument that inadequate wages and working conditions are producing a structural shortage of care workers just as the population requiring care is growing rapidly — and that this is not a market signal but a policy failure. By 2030, the population of Americans over sixty-five will reach approximately 73 million. The Bureau of Labor Statistics now projects about 739,800 openings for home health and personal care aides each year, on average, over the 2024-34 decade. Yet the workers needed to fill these roles are still paid wages that keep many of them in or near poverty. Labor advocates argue this is not an intractable economic reality but the predictable result of decades of underinvestment: Medicaid reimbursement rates set by state legislatures, not market forces, determine what home care agencies can pay workers. KFF's 2024 long-term-services overview makes the policy architecture visible. Medicaid finances 61 percent of all U.S. long-term services and supports spending, and new federal access rules now require states to spend at least 80 percent of certain HCBS payments on worker compensation. That is an implicit admission of the underlying problem: the care shortage is not only a demographic fact. It is also a wage-setting regime.

What feminist care economists and unpaid labor advocates are protecting

The economic invisibility of care work — and the argument that GDP and conventional labor metrics systematically undercount the work that makes every other form of productivity possible, while that invisibility perpetuates the gendered distribution of who performs it. Arlie Hochschild's concept of the "second shift" — the domestic and care labor performed by employed women after their paid workday ends — entered feminist sociology in 1989 and has only accumulated empirical support since. Time-use surveys across decades consistently find that women perform a disproportionate share of unpaid care work across income levels, educational levels, and countries. The pandemic made this visible in a way that aggregate statistics obscure: when schools closed, the labor of childcare fell predominantly on mothers, whose labor force participation rates dropped sharply while fathers' remained relatively stable. Nancy Folbre, in The Rise and Decline of Patriarchal Systems (2021), has traced how societies structured to extract unpaid care labor from women do so not through explicit coercion but through the organization of markets, tax systems, and social expectations that make the arrangement look like a natural preference. What feminist care economists are protecting is the insistence that "natural preference" is a political description — one that has consistently served the interests of those who benefit from unpaid care labor.

The caregiving penalty in labor markets — and the argument that supporting caregivers is not a welfare measure but an investment in human capital that the market systematically underprices. Workers who take time out of paid employment to provide care — overwhelmingly women — experience reduced lifetime earnings, reduced Social Security benefits, reduced pension accrual, and reduced career advancement in ways that compound over decades. Claudia Goldin's Nobel Prize-winning research on the gender pay gap found that the largest remaining driver of the gap is not discrimination in the narrow sense but what she calls "greedy jobs" — positions that disproportionately reward continuous, uninterrupted engagement and disproportionately penalize the flexible arrangements that caregivers require. The argument from care economists is not simply about fairness to caregivers, though it is about that. It is about what kind of work a society decides to value when it sets its incentives — and about who bears the cost when it decides care is not worth paying for.

What fiscal sustainability and aging society advocates are protecting

The arithmetic of an aging society — and the concern that politically attractive commitments to universal care infrastructure cannot be funded without generational transfers that raise genuine questions of intergenerational equity. KFF estimates that the United States spent $415 billion on long-term services and supports in 2022, with Medicaid covering 61 percent, out-of-pocket spending still accounting for 17 percent, and most spending now flowing through home- and community-based services rather than institutions. Germany's social care insurance system, established in 1995 and often cited as a model by US reformers, covers a meaningful portion of care costs but leaves significant gaps that families must fill — and premiums have risen steadily as the population ages. Japan, which implemented a universal long-term care insurance system in 2000, faces a care worker shortage despite the formal coverage structure. What fiscal sustainability advocates are protecting is the coherence of policy commitments over time: the argument that well-intentioned programs that underestimate demographic pressure tend to either collapse, produce care rationing, or require tax increases that create their own distributional effects. This is not an argument against investing in care infrastructure. It is an argument that "invest more" is an answer to a sentence that needs to end with "and fund it as follows."

The case for market and technological innovation in care — and the concern that regulatory approaches designed for institutional care settings may be poorly suited to the emerging landscape of home-based, technology-assisted, and consumer-directed care models. Consumer-directed care programs — which give disabled and elderly adults a budget they can use to hire their own care workers, sometimes including family members — have expanded significantly across states and have generally produced high satisfaction among recipients. Technology-assisted care, from medication management systems to remote monitoring to AI-assisted companionship applications, is growing rapidly and raises genuine questions about whether the regulatory frameworks designed for nursing homes and licensed home care agencies can accommodate innovation without sacrificing protection. Fiscal sustainability advocates argue that the supply problem in care — not enough workers, not enough options, not enough flexibility — is partly a regulatory problem, and that increasing the range of care options available to families will do more to close the care gap than any single policy intervention. This argument sits alongside concerns about what happens when the people receiving care cannot effectively evaluate or advocate for the quality of care they receive — which is a genuine tension that the market-innovation frame does not dissolve.

What the argument is actually about

Whether care is a private responsibility, a market commodity, or a social infrastructure — and who bears the cost of the current answer to that question. The United States has, without deliberating about it, answered this question in a particular way: care is primarily a private responsibility, supplemented by means-tested public programs for those who cannot provide it privately, with a market layer for those who can afford to purchase it. This answer has a distribution built into it. The costs fall on families — specifically on women in families — who absorb them invisibly. The costs also fall on care workers, whose wages reflect the political decision that care work is low-value. And the costs fall, in the future, on the people who will need care in an environment of workforce shortage and inadequate public coverage. What different positions are arguing about is whether this distribution is acceptable, inevitable, or chosen — and, if chosen, by whom and for whom. The end-of-life map names the downstream version of this same fight: when a dying person needs weeks of home nursing, medication management, respite, or someone who can leave work on short notice, the argument about "choice" is already being shaped by years of unpaid labor and underbuilt care infrastructure. Elder care is where that later moral emergency begins.

What it means to value care — and whether a society that does not pay people to do it, does not count it in its economic statistics, and does not treat caring for a parent as work of equivalent standing to other work has actually decided that care matters, or has merely said so. This is the argument that runs beneath the policy debate. It is not resolvable by a single program or a single number. It involves the question of what we owe each other — as family members, as citizens, as members of a society that produces the elderly as inevitably as it produces the young. Mary Wollstonecraft argued in 1792 that a society that confined women to domestic and care roles while calling those roles its highest values was saying two things that contradicted each other. The care debate asks a version of the same question, two and a half centuries later, with the demographics changed and the stakes larger: do we actually value this work, or do we value it in the way we value air — only when we notice it running out?

The woman who has not slept is not awaiting a policy resolution. She is managing Tuesday. The debate about care work is a debate about whether Tuesday is her problem alone, or whether it is the kind of problem a society acknowledges it helped create and has some responsibility to share. The answer different positions give to that question is not primarily a question about budgets. It is a question about what we believe we owe each other when the going gets slow and undramatic and lasts for years.