Vital and Undervalued

It is intuitive and obvious that family caregiving is common. None of the institutions that support a good life would be possible without the unpaid work of caregivers — from schools to hospitals to basketball games and book fairs. Everyone benefits from the time and attention of a loved one in their lives. While the structures of families and the relationships within them vary widely, everyone was once a child in need of care, many of us need some help actively, and still more of us will one day need help as we age. Estimates vary, but as many as half of all older Americans need some help with daily activities. It is thus unsurprising that, during any year, a large minority of Americans are engaged in caregiving.

According to a 2017 analysis by the Bureau of Labor Statistics (BLS) of data ranging from 2015 to 2016, 16 percent of Americans are providing unpaid eldercare. In 2018, the BLS American Time Use Survey found 18.8 percent of Americans are caring for a child on an average day. A 2018 Pew Research Center analysis found that 12 percent of parents caring for a child are also caring for an adult. Aside from the government, AARP and the National Alliance for Caregiving have conducted the most extensive surveys of caregivers providing unpaid eldercare. According to these surveys, as many as 1 in 3 households contain someone who provided unpaid caregiving in the course of a year. AARP’s findings on eldercare are also consistent with BLS findings, estimating that 16.6 percent of American adults engage in unpaid caregiving for an elder. To estimate the total number of all kinds of caregivers, combining those caring for children, anyone with a disability, and elders, AARP concluded in 2009 that 65.7 million Americans were caregivers.

Even before considering the future demand for caregiving, the care needs of many people are going unmet today. In the most comprehensive recent review of its kind, the National Health and Aging Trends Study, found that around 1 in 5 people needing help with “activities of daily living” have unmet needs. This finding is remarkably consistent across other studies which also find that around 20 percent of community-residing adults surveyed who need help with activities of daily living have unmet needs. Once we consider demographic trends, it is clear the need for caregivers will only grow.

America is aging. The total number and proportion of older Americans is growing. Longer lives with more healthy years is wonderful news. However, longer lives increase the demand for caregiving as people become more likely to need help as they age. As we expect the demand for caregiving to increase, we also expect the potential pool of people who might become caregivers to shrink. Today there are approximately three and a half working-age adults for every person of retirement age, but by 2060 the Census Bureau projects there will be only two and a half working-age adults for each older American.

There is also some reason to be concerned that the likelihood of needing help from a loved one is increasing. While there are varied findings in different reports, some research suggests that middle-aged Americans are showing an increased need for help with daily tasks and that growing chronic health problems could further increase demand for daily help.

Professional caregiving and the public provision of caregiving supports, including home care workers and the home and community based services funded by Medicaid, are critical components to any plan that would meet the needs of all Americans. Professional, paid and “informal,” unpaid caregiving are often necessary compliments to each other rather than substitutes. Even if they have other supports, the vast majority of American adults who need help with a daily activity have some amount of care provided by a loved one.

Caregiving is invaluable. It is impossible to capture the full worth of the care of a loved one. Simon Kuznets, a central contributor to the creation of the most important economic metric, gross domestic product or “GDP,” recognized the importance of unpaid caregiving, or “nonmarket production,” to the prosperity of a country even though it was not included in primary government statistics. The most comprehensive attempt to value at least the time spent by caregivers for the elderly concluded that the approximate dollar-value was $470 billion per year. A comparable valuation that expanded to include the time of caregivers for children and adults with disabilities could easily exceed $1 trillion per year at a minimum. A study of the value of unpaid care for children which included the value of factors such as the time managing care or maintaining vigilance “on-call” estimated the value to be in excess of $2 trillion per year. Such estimates give some sense of the benefits of caregiving. It is also possible to measure some discrete benefits to wellbeing of caregiving.

The presence of a caregiver means the recipient of care is less socially isolated. Avoiding social isolation is linked with a host of indications of wellbeing, both physical and psychological. Everything from cardiovascular health and recovery from illness to the more obvious problem of depression appears tied to social connections. There is evidence that people living with mental illnesses such as dementia and schizophrenia benefit from their loved ones being engaged in their care. When involved in discharge and able to help with recovery, caregivers can improve the chances that people avoid hospital readmission. In one study, cash-support to caregivers improved the health outcomes of the people for whom they cared.

To better understand the picture for the growing need to recognize the vital work of unpaid family caregivers, what follows summarizes demographic trends in select states and an estimate of the potential supply of family, friends and neighbors who are caregivers.

The value of policy is to foster what we as a country believe is good and to prevent what we believe is bad. It would be hard to find a politician who directly argues caregiving does not matter and is not worth doing. To understand why we should scrutinize how we make economic policy, policymakers have failed to invest in caregivers despite outstanding and growing need. The main metrics for economic policy neglect the obvious importance of caregivers to their families and to society.

Family caregivers contribute nothing that counts for GDP. Taking care of your own loved one without pay does nothing to create jobs. If anything, family caregiving reduces jobs or at least reduces hours worked in the formal economy. Growing GDP and creating jobs are often the principal stated aims of policymakers. The logic to a focus on GDP is that our society needs to produce more in order for everyone to enjoy better lives. The logic of a focus on job creation is that we expect everyone who can to contribute to society, so we need to put them to work. These two claims always had damaging consequences for people and the planet. They also have always neglected the work of lots of people. Common sense demands that we question both of these supposedly logical claims. The urgency of the caregiving challenge should force greater clarity about what metrics really matter, about what logic serves the interest of all Americans.

Rewarding the contributions of family caregivers would mean prioritizing the work that matters most to people. Proposals to expand the Child Tax Credit or create a virtually universal “child allowance” would recognize the importance of raising children. Some states have moved in the direction of supporting unpaid caregivers through Medicaid programs. However, major programs that are designed to reward contributions to society, like the Earned Income Tax Credit, still fail to count family caregiving as a contribution.

Even if their value is not tracked by GDP, family caregivers are essential for all of us to live good lives. Family caregivers do not need to be made to do “real” work. Family caregivers are working every single day, engaged in some of the most important work there is. For the sake of stronger families and more vibrant communities, policymakers have to move beyond the narrow definition of work that excludes the indispensable efforts of family caregivers. Fortunately the Biden administration, members of Congress of both parties, and states are now considering various methods of investing in family caregivers. As Americans begin to recover and heal from the horror of the pandemic this past year, investments in family caregiving are a crucial way to create a new foundation for a healthier country.