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In the United States, the vast majority of care that allows older people to live in their own homes is provided by family members who do not receive pay for their services. As the older share of the population increases and people live longer with chronic disabling conditions, particularly dementia, meeting the care needs of older Americans will become more challenging for families.

This report highlights recent National Institute on Aging-supported research on the impact of caregiving on family members, the dynamics of caregiving within extended families, and the future need and availability of family care. As policies deemphasize nursing home care in favor of community-based long-term support services, a better understanding of the family’s central role in caregiving is needed. This perspective can help policymakers, health care providers, and planners identify and implement strategies that better meet the care needs of older Americans and improve the lives of the family members who care for them.

Caregiver Availability and Constraints

A variety of trends have contributed to a widening gap between older Americans’ need for care and the availability of family members to provide that care, raising the potential for growing unmet needs, a heavier burden on individual caregivers, and increased demand for paid care. The combined effects of delayed childbearing and longer life expectancy mean more adults in later-middle age may be “sandwiched” between the competing demands of their children and those of their aging parents and parents-in-law. Women—who have traditionally served as parent care providers—are more likely to be employed than in previous generations, limiting their availability, and increasing their time constraints.

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Using the nationally representative Panel Survey of Income Dynamics (PSID), Wiemers and Bianchi (2015) showed a 20 percent increase between 1988 and 2007 in the share of women ages 45 to 64 who had both children and living parents or parents-in-law. One in 10 women in this age group provided significant parental care and either financial assistance or housing (within their homes for one year or more) to both an adult child (age 25 or older) and a parent during the period. Supporting multiple generations “may affect well-being in retirement if women decrease labor supply to care for parents or if money transfers to children are made at the expense of retirement savings,” the researchers argue.

Adults in their 50s, 60s, and 70s are more likely than those in previous generations to have divorced, increasing their likelihood of reaching old age without a spouse to assume the role of caregiver. Divorce also has implications for whether older adults will receive care from their children. In particular, divorce and remarriage may weaken adult children’s sense of obligation to provide elder care, particularly for fathers with whom they did not reside and for stepparents (Silverstein and Giarrusso 2010).

Taking a variety of trends into account including divorce, low fertility, and rising life expectancy, Ryan and colleagues (2012) created a model of the baby boom population to examine the future availability of family support. The model, based on census data and findings from the nationally representative Health and Retirement Study (HRS), allowed researchers to estimate how many baby boomers would have the types of family members who are the most common care providers—a living spouse or an adult child within 10 miles. The projections show that the share of 75-year-olds without the most common care providers will increase substantially between 2010 and 2030. Given the size of the baby boom population, the number of 75-year-olds without a spouse could more than double from roughly 875,000 in 2010 to 1.8 million in 2030, and those without an adult child nearby could increase by a multiple of six during that time—from about 100,000 to more than 600,000. The researchers suggest that baby boomers may need to rely on paid care providers or nontraditional caregivers such as siblings or stepchildren. Unmarried women with few economic resources are likely to be particularly disadvantaged by not having a spouse to provide care. To address this widening care gap, researchers argue for expanding long-term care insurance, designing aging-friendly neighborhoods, and planning for an increased demand for paid care services.

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Another way to meet older adults’ care needs is to better involve grown children who live at a distance from their parents, proposes Piette and colleagues (2010). Their analysis of HRS data showed that one in three chronically ill older adults had no children nearby but did have adult children living elsewhere. And three in four grown children were in frequent contact with their aging parents despite distance, through phone calls or visits (especially those who lived within a one-hour drive). More than half of the older adults said they could rely on their children if they had a serious problem and that their relationships were amicable. Involving out-of-town adult children in parents’ medical care and medication management is one way to better meet the needs of this group of chronically ill older people, the authors suggest.

Satariano, Scharlach, and Lindeman (2014) identify a wide range of new technologies that can support older adults and their caregivers, such as electronic medication reminders and ingestible devices to improve medication compliance, and wearable sensors that immediately report abrupt movements related to fall or injury. They recommend that research on the safety and effectiveness of these devices include input from caregivers and give special attention to economic barriers to their use.

Understanding the Impact of Caregiving on Family Members

Providing uncompensated care for a spouse or parent living with physical limitations can be both rewarding and stressful, and new research has helped identify how— and under what circumstances—providing care to an older relative is beneficial or harmful to the care provider’s well-being.

Roth, Fredman, and Haley (2015) examined five studies that followed groups of people over time and found that those who became caregivers tended to live longer and had lower mortality rates than similar noncaregivers. The researchers noted that “most caregivers also report benefits from caregiving, and many report little or no caregiving-related strain.” In one of those studies, Brown and colleagues (2009) tracked more than 3,300 married people ages 50 and older for eight years using HRS data. They found that those who spent 14 or more hours weekly caring for a spouse had a lower risk of death than otherwise comparable non-caregivers.

But other evidence indicates that prolonged caregiving for a spouse can negatively affect physical and mental health. Two recent studies based on eight years of HRS data tracked older married people who did not have high blood pressure or cardiovascular disease (CVD) at the beginning of the study (Capistrant, Moon, and Glymour 2012; and Capistrant et al. 2012). Caregiving for 14 hours or more weekly for two or more years doubled the risk of CVD onset and significantly increased the risk of developing high blood pressure compared to other similar adults who were not caregivers. Becoming a caregiver for a spouse (14 hours per week or more) also significantly increased an older adult’s risk of depression, according to another study of married HRS participants (Capistrant, Berkman, and Glymour 2014). But long-term caregiving (for two or more years) did not elevate the risks further, suggesting that grief related to experiencing a spouse’s functional decline rather than the long-term “wear and tear” of caregiving may be at the root of depression.

New findings from the nationally representative 2011 National Study of Caregiving offer a window into how caregivers experience their roles and which caregivers might be at risk of debilitating stress. This study collected information on the entire network of caregivers of each adult age 65 or older with activity limitations identified as part of the 2011 National Health and Aging Trends Study (NHATS), making it more comprehensive than previous large studies. Nine out of 10 informal caregivers are family members, mainly spouses or adult children (Spillman et al. 2014).

In interviews, nearly two out of three caregivers rated their caregiving experience as largely positive, pointing to benefits such as feeling closer to the care recipient and assured that the recipient was receiving high-quality care (Spillman et al. 2014). But one in 10 caregivers found caregiving a negative experience overall. Additionally, one in four caregivers surveyed said caregiving took an emotional toll and about one in seven cited either financial difficulties or physical problems related to their caregiving responsibilities. About one in six caregivers told researchers that they had more than they can handle, were exhausted at the end of the day, or had little personal time.

Those who experienced caregiving as negative and stressful tended to care for recipients with greater limitations or with dementia symptoms, provided more hours of care, or had health problems of their own. Specifically, caregivers with symptoms of depression and anxiety as well as those with their own physical limitations were much more likely to experience caregiving as negative and stressful.

Researchers are gaining a better understanding of how the stress and time demands of intensive caregiving may weaken the immune system and increase the risk of accelerated aging by examining telomeres—structures found on the ends of chromosomes that protect against DNA damage. Over the past decade, a growing body of research has identified links between shorter telomeres and increased risks for depression and for a number of chronic diseases, including CVD, some cancers, and diabetes. Researchers have documented that caregivers experiencing the greatest stress have shorter telomeres than other caregivers, adding to evidence that chronic stress affects caregivers’ bodies at the genetic and molecular level (Litzelman et al. 2014). Another study that examined differences in telomeres suggests that the chronic stress spouses and adult children experience while caring for Alzheimer’s disease patients may shorten the caregivers’ lives by as much as four to eight years (Damjanovic et al. 2007).

Caregiving Patterns Within Families

For an older married person living with a disability, the spouse is usually at the forefront of care activities. And traditionally, parents have tended to rely on daughters (and daughters-in-law) for more care than sons. Recent studies examining the dynamics of elder care within families show how gender and proximity continue to influence who makes up an older person’s network of caregivers.

Wives tended to be the sole care providers for their husbands no matter how much personal care the men needed, according to analysis of the HRS-related Asset and Health Dynamics Among the Oldest Old (AHEAD) study, which examined more than 7,000 adults ages 70 and older not living in nursing homes in the early 1990s (Feld et al. 2010). But the more functional limitations a wife had, the less likely her husband was her only caregiver and the more likely others helped provide her care, particularly daughters.

This difference in who provides care for married men and women may reflect the fact that many wives are younger than their husbands and are often less disabled. Hands-on caregiving is frequently central to a woman’s identity and may cause her to resist seeking or accepting help, suggest Feld and colleagues (2010). Another study, based on HRS data, showed that adult children tend to be involved in their mothers’ care no matter what their fathers’ health level, but are much more likely to provide care for their fathers after their mothers’ death (Noël-Miller 2010).

If a couple has both sons and daughters, the daughters are much more likely to become their mother’s primary caregivers, underscoring the “primacy of the mother-daughter tie,” report Leopold, Raab, and Engelhart (2014). Their analysis of HRS data tracked 2,400 previously independent adults and their grown children over a decade. Geography was the main factor determining which adult child provided care when a parent began needing assistance; caregivers’ work and family constraints had somewhat less influence. Other factors influencing caregiver selection included parent expectations, frequency of contact before the caregiving need arose, and whether the parent had provided financial assistance to the adult child or made the child a beneficiary of a will.

Among siblings, daughters and grown children living in close proximity to parents were more likely to be continuous care providers, according to another HRS-based study that tracked changes in primary caregivers over a two-year period (Szinovacz and Davey 2013). Parents were more likely to experience a switch in caregivers if they lived alone, had more sons than daughters, or had a higher number of children (and thus more alternative caregivers). The researchers found that the choice of a primary caregiver had more to do with expected gender norms and availability than adult children’s competing obligations such as work or family. The researchers point out that society has traditionally expected daughters to care for their parents and argue that it might be “psychologically more costly for women to decrease their care commitments,” despite the burden or conflicts they may experience.

Economics of Caregiving

The dollar value of the informal care that family and friends provide for older Americans totals an estimated $522 billion a year—more than total Medicaid spending ($449 billion in 2014), according to Chari and colleagues (2015). The researchers used new data from the 2011 and 2012 American Time Use Survey—which uses a relatively broad definition of elder care—to calculate the monetary value of the time uncompensated caregivers gave up in order to provide care. Replacing that care with unskilled paid care at minimum wage would cost $221 billion, while replacing it with skilled nursing care would cost $642 billion annually. Because most caregivers are employed, “the bulk of the economic burden of elderly care is shouldered by working adults,” the researchers argue.

Caregiving responsibilities appear to influence labor force participation, according to a study based on HRS data (Van Houtven, Coe, and Skira 2013). Providing personal care assistance to a parent slightly reduced men’s likelihood of working and may lead employed women to work fewer hours. The researchers suggest that women may seek lowerpaying jobs with more flexibility to accommodate caregiving. Among older workers who left a full-time position, taking on new caregiving responsibilities appeared to act as a barrier to working part time, according to Carr and Kail’s analysis of HRS data (2012). The more caregiving responsibilities the individuals had, the less likely they were to work parttime. “Providing support to new caregivers as they leave fulltime work may help them remain engaged in the workforce longer,” the authors suggest.

To estimate the impact of parent care on adult daughters’ current and future labor force participation and earnings, Skira (2015) created a model that accounts for declining parental health, the impact of a leave on daughters’ work history and experience, and the availability of job offers afterward. Incorporating data from HRS, she found that after taking an employment leave or cutting hours to provide parental care, the chances are low that adult daughters will return to work or increase their work hours. “Women who leave work forgo experience and the associated wage returns and also face a lower expected wage if they return to work,” she writes. The model suggests that the overall median cost to a woman in her mid-50s who leaves work is about $165,000 over two years, about equal to the cost of two years of nursing home care. This estimate is many times higher than estimates that only take into account the cost of lost wages.

Policy Implications

Family caregivers provide the majority of support that allows older adults with disabilities to live independently and avoid costly nursing home care. The estimated dollar value of uncompensated family care overshadows many large federal programs.

As the disproportionately large baby boom generation ages, the gap between elder care needs and available caregivers will widen dramatically. In 2010, there were seven potential caregivers ages 45 to 64 (the age group of the average family caregiver) for every person age 80 and older (the age group most likely to have a disability) (Redfoot, Feinberg, and Houser 2013). That ratio is projected to drop to 4 to 1 by 2030 and bottom out at 3 to 1 in 2050 when the entire baby boom generation passes the age 80 milestone. The shrinking pool of potential caregivers reflects the combined impact of lower fertility and longer life expectancy; the former reduces the number of adult children and grandchildren that an older person can turn to for care and the latter increases the length of time individuals may need care. This demographic shift is occurring alongside other trends that also limit the availability of potential caregivers, including an increased share of employed women and caregiving expectations weakened by divorce.

To meet the growing care needs of older people, researchers underscore the importance of anticipating a growing demand for paid care services and designing neighborhoods that allow older people with disabilities to age in place more easily. Policies that enable employed caregivers to manage their competing roles are key to keeping families from seeking nursing home care for the older adults with functional limitations. Researchers also point to innovative approaches, such as designing ways to involve adult children living at a distance in managing their elderly parents’ health care.

New surveys document high levels of unmet care needs, particularly among older people with low incomes. New data on caregivers identify those who face particularly high caregiving burdens, such as those caring for older people with dementia or more mild cognitive impairment. These new data can guide policymakers and planners as they target home-based support services and caregiver assistance programs. Indeed, policies that improve long-term care services and supports, and reduce unmet needs, could benefit both older adults and their caregivers, now and in the future.

References

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