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Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families Caring for an Aging America. Washington (DC): National Academies Press (US); 2016 Nov 8.

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Families Caring for an Aging America.

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4Economic Impact of Family Caregiving


This chapter examines the economic impact of unpaid caregiving on family caregivers of older adults who need help because of health or functional limitations and explores which caregivers are at greatest risk of severe financial consequences. Workplace and government policies and programs designed to support caregivers and/or mitigate these effects are also discussed. Caregivers of older adults can suffer significant financial consequences with respect to both direct out-of-pocket costs and long-term economic and retirement security. Spouses who are caregivers are especially at risk. More than half of today's caregivers are employed, yet current federal policy and most states' family leave is unpaid, making it difficult for many employed caregivers, particularly low-wage workers, to take time off for caregiving.

National surveys show that many family caregivers of older adults report financial strain associated with their roles as caregivers (NAC and AARP Public Policy Institute, 2015b; Spillman et al., 2014; Wolff et al., 2016), suggesting that there are important economic effects of taking on the caregiving role. This chapter examines the economic impact of unpaid family caregiving on family members and friends who care for older adults with functional or cognitive limitations, or a serious health condition, and identifies which caregivers are at greatest risk of severe financial consequences. It also explores the intersection of caregiving and work by examining the effects of caregiving on working caregivers and employers and describes workplace and government policies and programs designed to support working caregivers.

The economic effects of family caregiving can be examined at individual, family, and societal levels, including (1) reductions in available financial resources of the caregiver as a consequence of out-of-pocket expenses; (2) employment-related costs for the caregiver who must reduce work hours, exit the labor force, and forego income, benefits, and career opportunities in order to provide care; (3) employment-related costs to the employer who must replace workers who leave the labor force or reduce hours; and (4) societal benefits that include the potential cost savings to the formal health and long-term services and supports (LTSS) systems because of the care and support provided by family caregivers (Keating et al., 2014). The available research on these topics is limited and largely based on self-report data, studies that are too short in duration to capture long-term economic impact prospectively, and researchers disagree about assumptions made in economic impact analyses (e.g., replacement cost of a family caregiver) (Schulz and Martire, 2009).


Feelings of “financial strain” are a frequently used global measure of the economic costs of caregiving. For example, a recent survey conducted by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute (2015b) asked caregivers about “financial strain” related to family caregiving. The survey found that 36 percent of the caregivers of adults older than the age of 50 reported moderate to high levels of financial strain. Those caregivers most likely to report high levels were caregivers who live at a distance from the older care recipient, those with high levels of caregiving burden, and those who report they are the “primary” caregiver. In a recent analysis of the 2011 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC)1 for adults age 65 and older, caregivers who provided substantial assistance with health care activities (including care coordination and medication management) were more likely to report financial difficulty (23.0 percent) compared to their counterparts providing some assistance (12.0 percent) or no help (6.7 percent) (Wolff et al., 2016).

In 2011, nearly half (8.5 million of 17.7 million) of the nation's caregivers of older adults living at home or in residential care settings (other than nursing homes)2 provided care to high-need, older adults.3 As Figure 4-1 illustrates, the caregivers who are helping older adults with the greatest needs are the most likely to report having financial problems. Nearly one-third (31.3 percent) of the caregivers (in NSOC) who helped significantly impaired persons—those with both dementia and the need for help with at least two personal care activities—reported having financial difficulties related to caregiving. In contrast, only 16.2 percent of the caregivers of individuals who needed help with fewer than two personal care activities and do not have dementia reported financial difficulties (i.e., the care recipients).

FIGURE 4-1. Percentage of caregivers reporting financial difficulties, by the care recipient's dementia status and level of impairment.


Percentage of caregivers reporting financial difficulties, by the care recipient's dementia status and level of impairment. NOTES: Includes family caregivers of Medicare beneficiaries age 65 and older in the continental United States who resided in community (more...)

The caregiving literature consistently shows that caregivers of significantly impaired older adults are the most likely to suffer economic effects (Butrica and Karamcheva, 2014; Jacobs et al., 2014; Langa et al., 2001; Lilly et al., 2007; NAC and AARP Public Policy Institute, 2015b; Van Houtven et al., 2013). The economic impact of intensive caregiving is likely related to the many hours of care and supervision that this population requires and the costs of hiring help. In a recent multivariate analysis of eight waves of the Health and Retirement Study (HRS), for example, Butrica and Karamcheva (2014) found that caregivers who helped with dressing, bathing, and eating provided nearly three times the number of caregiving hours than caregivers who provided only household help. They were also more likely than household helpers to provide at least 1,000 hours of help annually.

Other researchers, using longitudinal data, suggest that caregiving for an older adult places the caregiver at financial risk over time. For example, Wakabayashi and Donato (2006) found that caregiving increases the likelihood that women experience poverty and/or reliance on public assistance. Lee and Zurlo (2014) also found a positive association between caregiving and lower income later in life. In their examination of an eight-wave longitudinal study, Butrica and Karamcheva (2014) found that caregiving was associated with both reduced labor force participation and reduced net worth of family caregivers when compared with non-caregivers. These are examples of some of the broad economic impacts of caregiving. The discussion below examines in greater detail specific types of economic impact on the caregiver.


Out-of-pocket spending generally refers to the purchase of goods and services on behalf of the person whom the caregiver is helping, including payment for medical/pharmaceutical co-pays, meals, transportation, and goods and services. Data on the dollar value of out-of-pocket costs are limited. The available estimates are based on self-reports that use rather broad and vague definitions of what constitutes an out-of-pocket caregiving expense. Little is known about the extent to which older adults and their family caregivers share the costs. One 2007 telephone survey asked caregivers about a wide range of spending including medical expenses, food and meals, household goods, travel costs, care recipient services (adult day services and home care), nursing home/assisted living costs, housing costs, caregiving services, home modifications, clothing, medical equipment/supplies, and legal fees. The caregivers reported an average annual amount of $5,531; long-distance caregivers had the highest average annual expenses ($8,728) (Evercare and NAC, 2007). One in five caregivers reported that older adults' out-of-pocket medical costs were their highest expense. The 2011 NSOC found that 8 percent of caregivers incurred more than $1,000 per year in out-of-pocket caregiving costs—defined as spending on medications or medical care, Medicare or other insurance premiums or copay-ments, mobility and other assistive devices, home modifications, and paid home health aides. For some caregivers these costs may mean drawing down assets, taking on debt, or foregoing treatment of their own health problems. Better data on economic effects of caregiving on the family caregiver are needed to provide an accurate picture of the magnitude and predictors of economic effects.

Out-of-pocket spending plays a significant part of financing for LTSS because insurance—public or private—is lacking for these services, including hiring direct care workers such as home health aides and personal care workers. In one national survey, one in four (25 percent) family caregivers said it was very difficult to get affordable services in the older adult's community that would help with their care (NAC and AARP Public Policy Institute, 2015b). Out-of-pocket expenses for older adults who are not Medicaid eligible or do not have long-term care insurance must be covered by the older adult or their family. Medicare does not cover LTSS and Medicaid is only available after people have become impoverished.

The wealthiest families may have funds to pay for supportive services but many middle-class families cannot afford the home- and community-based services that will enable their elders to remain at home and avoid even more expensive institutional care (Bookman and Kimbrel, 2011). In 2016 the cost of employing a home health aide full time for 1 year was nearly $46,480 and use of adult day services cost nearly $18,000. The median annual cost for an assisted living facility was $43,539 in 2016; the median annual cost for nursing home care was $92,378 in 2016 (Genworth, 2016).


Today's caregivers of older adults are much more likely to be employed than in the past. The NSOC found that approximately half of all caregivers to older adults were employed either part- or full-time. Of those caregivers who worked, 69 percent were employed at least 35 hours weekly. In 2011, half of the estimated 17.7 million caregivers of older adults (8.7 million or 50.3 percent) in the United States worked (see Figure 4-2). Depending on the care needs and the intensity of the caregiving role, a caregiver may have to make accommodations in order to manage their caregiving responsibilities and their job. Researchers, advocates, and observers have raised concerns that the demands of caregiving can negatively impact caregivers' ability to stay in the workforce and thus jeopardize their income, job security, personal retirement savings, eventual Social Security and retirement benefits, career opportunities, and overall long-term financial well-being (Arno et al., 2011; Feinberg and Choula, 2012; Lilly et al., 2007; Munnell et al., 2015; Reinhard et al., 2015; Skira, 2015; Van Houtven et al., 2013; Wakabayashi and Donato, 2006).

FIGURE 4-2. Employment status of family caregivers of older adults, by sex, co-residence, relationship, race, education, and household income.


Employment status of family caregivers of older adults, by sex, co-residence, relationship, race, education, and household income. NOTES: N = 8.7 million (employed caregivers). Includes family caregivers of Medicare beneficiaries age 65 and older in the (more...)

Other survey data (NAC and AARP Public Policy Institute, 2015a) suggest that the majority (61 percent) of employed caregivers need to make some workplace accommodations such as coming in late to work or leaving early, taking time off to manage care situations, reducing work hours or level of responsibility, and/or taking a leave of absence. All of these accommodations have potential costs associated with them for both the caregiver and the employer. If an employee has exhausted his/her paid time off or has no paid time off to begin with, each hour of work lost due to caregiving activities bears a financial cost to the employee. Taking unpaid leave is expensive, as is cutting hours or taking a lower paying job with less responsibility. Not only does the caregiver have an immediate loss of income, his/her long-term economic status may be affected due to lower retirement savings or benefits.

As Chapter 2 describes, current trends point to higher rates of employment among caregivers in the future—especially for the wives and daughters of older adults (Stone, 2015). The U.S. Bureau of Labor Statistics projects that women's participation in the labor force will continue to increase during the same years they are most likely to be caregiving (Toossi, 2009). The percentage of women older than age 54 who work, for example, is expected to increase from 28.5 percent in 2012 to 35.1 percent in 2022. During the same period, the percentage of working women older than age 64—those most likely to be caring for a spouse—is expected to increase from 14.4 percent to 19.5 percent. As women work outside the home to make ends meet and grow the economy, the demands and pressures of working families to balance work, caregiving, and other family responsibilities have grown (Feinberg, 2013).

Caregivers' employment rates are highly variable across important subgroups (Bauer and Sousa-Poza, 2015; Jacobs et al., 2014; Lilly et al., 2007; Van Houtven et al., 2013). The 2011 NSOC found marked differences in employment between those caring for a spouse (24 percent) or a parent (more than 60 percent).

Although many people expect to work longer—primarily driven by financial considerations—family caregiving responsibilities can sometimes get in the way of continued employment (Feinberg, 2014). Surveys indicate a strong association between caregiving—especially high levels of caregiving—and reduced work for pay. One national survey found that one in five (19 percent) retirees left the workforce earlier than planned because of the need to care for an ill spouse or other family member (Helman et al., 2015). In the 2015 Caregiving in the U.S. survey (NAC and AARP Public Policy Institute, 2015a), working caregivers who quit their job or took early retirement reported doing so in order to have more time with the person they were helping (39 percent) or because their job did not provide flexible scheduling (34 percent). Caregivers with high care hours provided to the older person reported that they left the job because they could not afford to hire a paid caregiver. Co-resident caregivers were most likely to make income-related accommodations such as cutting back work hours, taking a leave of absence, quitting a job, or taking early retirement. A recent analysis of NHATS and NSOC data revealed that working caregivers who provide high levels of help with health care activities were three times more likely to experience work productivity loss4 than caregivers who provided some or no help with health care (Wolff et al., 2016). Some research has also examined how family caregiving affects a woman's current and future employment situation and retirement security. One study, using data from HRS, found that women who leave work while caregiving may find it difficult to return to the labor force after they cease providing care to a parent (Skira, 2015). A study by Arno and colleagues (2011) based on HRS longitudinal data examined the long-term economic effects on workers who either reduced their hours at work or left the workplace before full retirement age. The analysis found that income-related losses sustained by family caregivers ages 50 and older who leave the workforce to care for a parent are $303,880, on average, in lost income and benefits over a caregiver's lifetime.5 More research is needed to fully understand the factors influencing the working caregiver's productivity and decision to exit and later return to the workplace and whether there are strategies that could mitigate adverse economic effects.

Figure 4-2 illustrates the employment rates by selected characteristics. These rates suggest that factors that would predict the ability to continue working while providing care are related to higher education and income levels. Caregivers with a lower level of education or lower income are the least likely to be in the workforce and therefore are most at risk of the economic losses outlined earlier.


Much less is known about caregiving-related costs to employers. Employer- or business-related costs may include the replacement costs for employees who quit due to their caregiving responsibilities, costs of absenteeism and workday interruptions, as well as management and administrative costs based on the time supervisors spend on issues of employed caregivers. Some estimates suggest that the cost to U.S. businesses due to caregiving may exceed $29 to $33 billion per year, but these estimates should be viewed cautiously as they are based on old data and the studies make debatable assumptions in carrying out their analysis (MetLife Mature Market Institute and NAC, 1997, 2006). Reliable data on the impact of eldercare on U.S. businesses are currently not available.

Some, primarily large, employers have invested resources in developing workplace programs for caregiving employees in an effort to support caregivers and retain workers. Anecdotal evidence suggests that these programs may be well received and helpful to employed caregivers. However, data do not exist to assess the effect of programs on employers or their return on investment. The few studies undertaken to explore these outcomes are largely dependent on self-reported data with the expected limitations (Gwyther and Matchar, 2015/2016; NAC and ReACT, 2012; Wagner et al., 2012). Only a few studies have been done to explore the small business environment (Matos and Galinsky, 2014; MetLife Mature Market Institute and NAC, 2006). Nonetheless, the topic of economic impact of family caregiving is an important one for both employers and caregivers who are employed. As new workplace policies emerge it will be important to assess employer acceptance, impact on business and industry, and benefit to the caregiver.


Family caregiving has the potential of substituting for formal health care services and the associated costs to Medicare and Medicaid in the form of reduced nursing home use and lower rates of home health care utilization (Charles and Sevak, 2005; Van Houtven and Norton, 2008). Both intervention and descriptive studies suggest that under some circumstances cost savings can be achieved in the form of delayed institutionalization, reduced rehospitalizations, and lower home health service use. These studies are described in subsequent chapters on interventions with caregivers (see Chapter 5) and health care and LTSS (see Chapter 6).

Some researchers estimate the societal benefit of family caregiving by calculating the replacement costs of the time spent by family caregivers on tasks that someone else could perform (and assuming an hourly wage that would be paid in lieu of caregiving). Estimates of the economic value of unpaid care depend on which data sources are used and how caregiving is defined. Most studies use survey data to estimate the number of family caregivers, the number of hours of care provided by caregivers, and the average wage of a home health aide (the replacement for the family caregiver). The Congressional Budget Office estimates that, in 2011, unpaid care provided by family caregivers to older adults was worth about $234 billion (CBO, 2013). However, estimating replacement costs is complex because not all caregivers are alike. For example, replacement costs for retired individuals would likely be different than replacement costs for younger caregivers in the workforce. In addition, as noted by Skira (2015), existing static estimates are likely to underestimate the true cost because they do not take into account dynamic wage and employment effects of elder parent care such as leaving the labor force permanently as a result of caregiving.


Balancing work and caregiving responsibilities is a difficult task even under the best of circumstances. A flexible workplace can support employed caregivers with the time they need to handle emergencies and routine matters such as doctor's appointments. However, many family caregivers lack this flexibility and, for those who do not have the option of taking time off with pay, balancing work and family responsibilities can be nearly impossible. Employees may be absent from work for both planned and unplanned reasons. For example, taking a mother to a scheduled doctor's appointment is a planned leave from work. Going to the hospital to care for a father who has suffered a stroke is an example of unplanned leave that may happen due to an urgent and unexpected situation (Feinberg, 2013). The U.S. Department of Labor (DOL) (2015c) reports that 40 percent of the private-sector workforce lacks access to any paid sick leave, while 70 percent of workers who have earnings in the bottom 25 percent of the wage scale in the United States lacks any paid time off.

Flexible Workplaces

Flexible workplaces may include flexibility about where work occurs, when work takes place, and an option to modify work schedules according to competing responsibilities. In 2014, President Obama signed a Presidential Memorandum that gave federal workers a right to request flexible working arrangements. Flexible workplaces are not only good for the employees with caregiving responsibilities but benefit employers as well. Studies suggest that flexible work policies reduce turnover and absenteeism among employees and may improve productivity (Council of Economic Advisors, 2010). Flexible work schedules specifically with respect to eldercare have not been studied.

Family and Medical Leave Policies

The federal Family and Medical Leave Act (FMLA) has been in place in the United States since 1993. The Act allows workers to take unpaid, job-protected leave to care for a worker's own health needs, to bond with a new child, or to care for a seriously ill family member (child, parent, or spouse). FMLA only applies to governmental agencies and private employers with more than 50 employees. Eligibility for FMLA requires a worker to have been employed by the covered employer for at least 12 months and to have worked at least 1,250 hours. Up to 12 weeks of unpaid leave may be taken during any 12-month period and employees must be able to return to their job or equivalent with the same pay, benefits, and working conditions (Mayer, 2013). FMLA can be taken intermittently, over a 12-week period, or by working part time. In most states, the circumstances that define a worker's right to FMLA are limited to certain relationships: spouses, domestic partners, children, and parents. Many caregivers of older adults such as in-laws—daughters or sons—step-children, grandchildren, siblings, nieces and nephews, and other relatives are not eligible for the protection of FMLA. Overall 40 percent of U.S. workers do not qualify for FMLA due to their family relationship to the care recipient or because of the law's other restrictions (Klerman et al., 2014).

FMLA is also not a true option for low-income people who cannot afford to forego wages they would lose by taking it (Feinberg, 2013; Umberson and Montez, 2010). In a DOL-sponsored survey in 2011, 17 percent of caregivers did not take leave because they feared losing their job even though they were eligible for protected job leave, and 8 percent did not access unpaid leave benefits because they were not eligible due to the relationship with the care recipient (Klerman et al. , 2014).

Although DOL has sponsored a series of surveys to track the implementation of FMLA, the agency's data collection is not detailed enough to assess the law's specific impact on caregivers of older adults. The most recent DOL survey indicates that, in 2012, 18 percent of workers who took leave under FMLA did so to care for a child, parent, or spouse with a serious health condition (Klerman et al., 2014). The survey did not distinguish among the different caregiver categories, so data on leave taken specifically for eldercare are not available.

Fourteen states including the District of Columbia have enacted legislation to extend FMLA to other family relationships, most often to domestic partners and parents-in-law but also including grandparents, grandchildren, and siblings. Six states have also expanded eligibility to some workers in smaller firms. Table 4-1 lists the covered categories for each state.

TABLE 4-1. States with Expansions in Unpaid Family and Medical Leave.


States with Expansions in Unpaid Family and Medical Leave.

Access to Paid Family Leave

The overwhelming majority of U.S. workers do not have access to paid family or medical leave (Glynn, 2015). According to the National Compensation Survey, only 12 percent of private-sector workers have access to paid family leave benefits through their employers (BLS, 2015a). In this survey, lower-wage workers were less likely than higher-wage workers to have access to paid family leave. Although paid family leave is not available to most workers, other forms of paid leave can support a working family caregiver. When employers provide paid time off, it can be in the form of vacation days, sick leave, personal days, or as “PTO,” paid time off for any reason (Bishow, 2015; BLS, 2015a). Box 4-1 outlines alternative paid leave options that may be available to employees. The form of leave benefits vary widely across occupations, type of worker, industries, establishment size, and geographic areas. Nearly all full-time federal, state, and local government employees are entitled to paid leave of some type (BLS, 2015a).

Box Icon

BOX 4-1

Paid Leave and Caregiving.

Table 4-2 shows the percentage of workers in wage categories without any paid leave. As can be seen, there is a clear association between low wages and part-time status and no paid leave options.

TABLE 4-2. Workers Without Employer-Paid Leave, by Average Wage Category and Weekly Work Hours, 2015.


Workers Without Employer-Paid Leave, by Average Wage Category and Weekly Work Hours, 2015.

State and Local Efforts to Expand Access to Paid Leave for Family Caregivers

State governments provided the leadership in the development of the paid family and medical leave policies in place today. Connecticut was the first state to enact paid family leave for state employees in 1987. In 2004, California began the first paid family and medical leave program in the nation (Wagner, 2006). Today states are again leading in the development of paid family leave programs. Four states—California, New Jersey, New York, and Rhode Island—have enacted access to paid family and medical leave programs for new parents and caregivers of certain seriously ill family members. New York and Rhode Island incorporate job protection as a feature of their program. The four programs share the following design characteristics:

  • Financed through an insurance model
  • Fully funded by worker payroll deductions
  • Provides partial pay replacement for a finite period of time
  • Covers caregivers of spouses, parents, and domestic partners (California, New York, and Rhode Island also include parents-in-law and grandparents; siblings are eligible only in California)
  • Uses an existing state infrastructure to finance and administer claims (i.e., Temporary Disability Insurance [TDI] agencies)

The annual payroll deductions are designed to fully cover the program costs (Fiscal Policy Institute, 2014). Some evidence indicates that costs are low because program utilization is low (Appelbaum and Milkman, 2011). Because New York's program was passed in 2016, data on the program will not be available until after the program starts in 2018 (A Better Balance, 2016).

Impact of Paid Family Leave Programs on Caregivers of Older Adults

Determining the direct impact of these programs on caregivers of older adults is difficult although the programs clearly offer some financial protection for those who can use them. The states collect some data on users but not in enough detail to identify the ages or conditions of the older adults who receive care. In every state, the programs are used primarily by new parents for bonding with infants (Andrew Chang & Company, 2015; Bartel et al., 2014; EDD, 2014a,b, 2015; Milkman and Appelbaum, 2014; National Partnership for Women and Families, 2015; New Jersey Department of Labor and Workforce Development, 2015) (see Table 4-3). People caring for spouses or adult children caring for parents constitute about 6 to 10 percent of claimants—presumably many of their care recipients are older adults. In New Jersey, 60 percent of family care claims in 2011 were made by employed caregivers aged 45 and older (Feinberg, 2013).

TABLE 4-3. Characteristics of State Mandatory Paid Family and Medical Leave Programs.


Characteristics of State Mandatory Paid Family and Medical Leave Programs.

Public awareness of the programs is a problem particularly with respect to eligibility for paid leave to care for seriously ill family members. In California, the individuals who are most likely to benefit from paid family leave are among those groups least likely to know about it (Andrew Chang & Company, 2015; Field Research Corporation and California Center for Research on Women & Families, 2015). A survey conducted in late 2014, for example, found that only 36 percent of California registered voters knew about the program and its benefits; awareness was particularly low among ethnic minority groups (i.e., persons identifying as Latino, African American, or Asian American), individuals with no more than a high school education, low-income households, and women (Field Research Corporation and California Center for Research on Women & Families, 2015). A New Jersey poll found that 60 percent of the public did not know about the family caregiving benefit (White et al., 2013). Some workers may not use available paid family leave because the benefit does not guarantee job security, or because they cannot afford to take the time off because the paid leave benefit covers only partial wage replacement.

In 2014, the California legislature funded a public education and outreach campaign that including focused market research on the linguistic and cultural issues that may affect awareness and use of family leave benefits. Focus group discussions—structured to examine the perspectives of eligible Armenian, Chinese, Filipino, Latino, LGBTQ Californians, Punjabi, and Vietnamese—revealed significant challenges in communicating information about paid family leave (Andrew Chang & Company, 2015).

Impact of Paid Family Leave Programs on Employers

Most of the published reports on employers' response to their state's mandated paid leave program draw from small surveys and structured, in-depth interviews with selected employers. Most employers appear to have adapted to the mandates although some report additional costs. A 2010 survey of California employers found that nearly 90 percent of employers reported either a positive or no noticeable effect on productivity, profitability, or employee turnover (Appelbaum and Milkman, 2011). In-depth interviews with 18 New Jersey employers 4 years after the start of the program found largely positive responses (Lerner and Appelbaum, 2014). The surveyed employers represented businesses with as few as 26 employees and as many as 36,000 employees. All respondents had at least one employee who submitted a claim for paid family leave. Some employers said it improved morale and led to only small to moderate increases in paperwork. However, 2 of the 18 employers said the mandate led to lower profitability.

Prospects for New State and Local Paid Family Leave Programs

California, New Jersey, New York, and Rhode Island have been able to limit the cost of implementing paid family leave by using existing TDI state agencies. These states have extended TDI programs to provide a partial wage replacement benefit to employees caring for a relative with an illness (Feinberg, 2013; New York State Legislature, 2016). In April 2016, California expanded its paid family leave law to include more low-income workers and to provide higher pay to workers while on leave (effective in 2018). Only one other state—Hawaii—has the same TDI infrastructure but it does not have a paid family leave program (National Partnership for Women and Families, 2015).6 Washington State—which does not have a TDI program—enacted paid family leave in 2007 but has yet to implement it due to lack of start-up funds (Glynn, 2015). Table 4-3 displays the characteristics of state mandatory paid family and medical leave programs.

Additional insights into other approaches for the design and implementation of paid family medical leave programs may be forthcoming from DOL. Since 2014, DOL has awarded more than $2 million in grants to 12 states and localities to either evaluate their existing programs or to conduct feasibility studies to encourage their development. The grantees are California; the District of Columbia; Massachusetts; Montana; Montgomery County, Maryland; New Hampshire; New York City; Rhode Island; Tennessee; Vermont; and Washington state (DOL, 2015b). Recently DOL announced the third round of $1 million in grants. Importantly, in this round of paid leave analysis grants, DOL is encouraging states/localities to study issues related to eldercare. DOL will award up to three points to applications that touch on paid family leave for workers with eldercare responsibilities (DOL, 2016).

Access to Mandatory Paid Sick Leave

Five states—California, Connecticut, Massachusetts, Oregon, and Vermont—have recently enacted paid sick leave laws affecting the employees of all or a large portion of the respective state's employers. The policies, described in Table 4-4, have important implications for employed caregivers because they stipulate that workers have access to paid sick time when caring for certain ill family members. Earned sick day policies differ from paid family and medical leave policies. Public policies covering sick days at work generally cover a limited number of paid days off per year (typically between 3 and 9 days, depending on state or locality) with full wage replacement (Reinhard and Feinberg, 2015). California has the most expansive definition of eligible family members; it includes spouses, domestic partners, parents, parents-in-law, grandparents, and siblings. Connecticut covers spouses only. The Massachusetts statute—a result of a 2014 ballot initiative—allows time off for workers taking family members to a medical appointment.

TABLE 4-4. Characteristics of State Mandatory Paid Sick Leave Laws.


Characteristics of State Mandatory Paid Sick Leave Laws.

Employers in a growing number of major metropolitan areas are also subject to local paid sick leave mandates (National Partnership for Women and Families, 2015; Reyes, 2016). These include Eugene and Portland, Oregon; New York City; the San Francisco Bay Area; Los Angeles; Montgomery County, Maryland; Philadelphia and Pittsburgh; Seattle and Tacoma; Washington, DC; and nine New Jersey cities.7

Federal workers and contractors also have access to sick leave. In January 2015, the White House issued a Presidential Memorandum directing federal agencies to advance up to 6 weeks of paid sick leave for federal employees to care for ill family members, including spouses and parents (White House Office of the Press Secretary, 2015a). In September 2015, the President signed an Executive Order requiring federal contractors to offer their employees up to 7 days of paid sick leave annually, including paid leave allowing employees to care for ill family members (White House Office of the Press Secretary, 2015b).

Caregiving and Social Security Benefits

Because Social Security benefits are based on one's earnings history, caregivers who cut their work hours or withdraw from the workforce will ultimately receive lower Social Security payments. Social Security caregiving credits have been proposed as one way to reduce the impact of foregone wages on future benefits (Estes et al., 2012; Morris, 2007; White-Means and Rubin, 2009). In its simplest form, a Social Security credit program would prospectively credit eligible caregivers with a defined level of deemed wages up to a specified time period. White-Means and Rubin (2009), for example, have proposed that full-time caregivers receive up to 4 years of Social Security work credits equal to the individual's average wage or self-employment income during the previous 3 years. The caregiver's eligibility would require certification by a physician as to the care recipient's level of need. Using 2008 estimates, the analysts projected that married caregivers who used the credit for the full 4 years would see a lifetime increase in Social Security benefits of $8,448 and single caregivers would receive $13,632 more.

The costs of developing and administering a Social Security caregiver credit program have not been fully explored. The direct cost of the credits would depend on several variables such as eligibility criteria (e.g., spouses, adult children, or others), the maximum number of creditable years, and the method used to calculate individual payments (Jankowski, 2011). The development and management of an infrastructure to administer the program would also have costs.

Job Discrimination

Some employed caregivers of older adults may be subject to workplace discrimination because of their caregiving responsibilities (Bornstein, 2012; Calvert, 2010; Calvert et al., 2014; EEOC, 2007, 2009; Williams et al., 2012). Family responsibility discrimination (FRD), also called caregiver discrimination, is employment discrimination against someone based on his or her family caregiving responsibilities and the assumption that workers with family obligations are not dependable or less productive than their peers (Calvert, 2015). The outcome can be emotionally draining and costly to the working caregiver. Appendix G includes the stories of two workers who reported experiencing job discrimination as a consequence of their family caregiving responsibilities.

FRD usually results from unexamined assumptions about how an employee will or should act. For example, a supervisor may assume that a woman will not be as attentive or committed an employee after she advises her supervisor of her need to take periodic time off to care for her ill husband. FRD occurs when caregivers—regardless of their work performance—are rejected for hire, denied a promotion, demoted, harassed, terminated, or subjected to schedule changes that force the employee to quit (Calvert, 2010). One recent national study found that 5 percent of working caregivers age 65 or older had ever received a warning about their performance or attendance as a result of caregiving (NAC and AARP Public Policy Institute, 2015b).

Responses to evidence of FRD have been varied. No federal statutes or regulations specifically prohibit FRD. Some states and localities have enacted laws that protect workers with family responsibilities as a specific group or class from discrimination—but the protections are sometimes limited to childcare responsibilities (Reinhard et al., 2014; Williams et al., 2012). In January 2016, the Mayor of New York City signed legislation expanding the protections of the city's Human Rights law against employment discrimination to include caregivers of a minor child or an individual with a disability. The law adds “caregiver status” as an additional protected category for which employment discrimination is prohibited (McHone, 2016).

In 2007, the Equal Employment Opportunity Commission (EEOC) issued a report on FRD, Enforcement Guidance: Unlawful Disparate Treatment of Workers with Caregiving Responsibilities (EEOC, 2007). While the report acknowledges that federal equal employment opportunity laws do not prohibit discrimination against caregivers, it articulates the circumstances in which employment decisions affecting a caregiver might unlawfully discriminate on the basis of Title VII of the Civil Rights Act8or the Americans with Disabilities Act.9 Further guidance is provided in an EEOC best practices guide for employers (EEOC, 2009). Although the EEOC efforts are valuable, the agency's advice does not carry the weight of regulation nor does it have authority over FMLA and other statutes outside of the agency's jurisdiction.

The magnitude of the impact of FRD on family caregivers of older adults is not known; most reported cases relate to pregnancy and parenthood. The Center for WorkLife Law, which tracks litigated cases of FRD cases decided by courts, agencies, and arbitrators, has compiled a dataset of more than 4,400 cases dating from 1996 to 2015 (Calvert, 2016). Overall, 11 percent of the cases were related to caregiving for aging relatives. The report author suggests that because FRD cases are identified primarily through publicly available court rulings, they may be a small fraction of the total number of actual cases.


More than 30 years ago, employee surveys began to raise concerns among large employers and organized labor about the challenges faced by workers with caregiving responsibilities (Labor Project for Working Families, 1999; Travelers Insurance Companies, 1985). An often cited Fortune magazine survey found that even some CEOs reported they did not believe they could manage their own jobs if they had to care for a parent (Fortune Magazine and John Hancock Financial Services, 1989). In response, large employers began to provide workplace programs to support workers and mitigate the impact of caregiving on employees' temporary or permanent departures, lower productivity, absenteeism, coming to work late or leaving early, accidents or mistakes, and health problems (Galinsky and Stein, 1990; GAO, 1994; Wagner et al., 2012). The 2014 Society for Human Resource Management (SHRM) survey of employers estimates that 5 percent of employers provide eldercare referral services, 1 percent geriatric counseling and 1 percent eldercare in-home assessments (Matos and Galinsky, 2014). There is little empirical evidence about outcomes of the workplace programs and the extent to which they either assist the employee with caregiving responsibilities or mitigate work–family conflicts. Early research supports the idea that many employees do not feel comfortable bringing a family issue into the workplace and may, as a result, not use available programs (Wagner and Hunt, 1994). However, there is evidence as discussed earlier, that workplace flexibility supports those employees with eldercare responsibilities. The three eldercare workplace programs shown in Box 4-2 were selected as examples because of their successes over time (Fannie Mae and Duke University) and the thoughtfulness and careful planning that went in to the newly developed Emory University program. The university used consultants and studied both the campus needs and the resources in the community in their planning.

Box Icon

BOX 4-2

Three Noteworthy Eldercare Workplace Programs.


The committee's key findings and conclusions are described in detail in Box 4-3. In summary, the committee concludes that family caregiving of older adults poses substantial financial risks for some caregivers. Although the relevant evidence is based primarily on caregivers' self-reports, research consistently shows that family caregivers of older adults with significant physical and cognitive impairments (and associated behavioral symptoms) are at the greatest risk of economic harm. This risk is especially true for low-income caregivers (and families) with limited financial resources, caregivers who reside with or live far from the older adult who needs care, and caregivers with limited or no access to paid leave benefits (if they are employed).

Box Icon

BOX 4-3

Key Findings and Conclusions: Economic Impact of Family Caregiving.

Some caregivers cut back on paid work hours or leave the workforce altogether to care for an older adult. As a result, they lose income and may receive reduced Social Security and other retirement benefits. They may also incur significant out-of-pocket expenses to pay for help and other caregiving expenses. There is also some evidence of increasing job-related discrimination against workers with eldercare responsibilities.

Caregiving of older adults has substantial implications for the workplace. Today's family caregivers of older adults are more likely to be in the workforce than ever before—more than half are employed either part- or full-time. Moreover, the cohort of Americans most likely to care for older adults—women age 55 and older—are expected to participate in the workforce at increasing rates.

Federal policies provide little protection to many employed caregivers in these circumstances. For example, daughters- and sons-in-law, stepchildren, grandchildren, nieces and nephews, and siblings of older adults are not eligible for FMLA's unpaid leave or job protections for family leave. Low-wage and part-time workers are particularly vulnerable because they cannot afford to take unpaid leave and their employers are less likely to offer paid time off. A handful of states and local governments have taken action to assure access to some form of paid family or sick leave. However, much remains to be learned about how these efforts have specifically affected caregivers of older adults or their employers.

The impact of family caregiving on employers has not been well studied. Some large employers have established programs to support workers with eldercare responsibilities. Unfortunately, there is little empirical evidence about the costs and outcomes of workplace programs or the extent to which they help working caregivers juggle their caregiving and job responsibilities. Data and research are clearly needed to learn how to effectively support working caregivers of older adults through workplace leave benefits, protections from job discrimination, or other approaches.




The prevalence data presented in this report draw primarily from NHATS and NSOC, unless noted otherwise. See Chapter 2 and Appendix E for additional information about the surveys and the committee's methods in analyzing them.


NSOC includes caregivers of older adults living in any type of residential care setting other than a nursing home. Residential care settings include assisted or independent living facilities, personal care and group home settings, continuing care retirement communities, and other settings (Kasper and Freedman, 2014).


See Chapter 2 for additional statistics describing the caregiver population.


“Work productivity loss” in this research was a composite variable based on measures of absenteeism (missed hours of work because of caregiving in relation to typical hours worked) and presenteeism (negative effect of caregiving on productivity when at work) (Wolff et al., 2016).


In this study, the estimates range from a total of $283,716 for men to $324,044 for women, or $303,880 on average. The average figure breaks down as follows: $115,900 in lost wages, $137,980 in lost Social Security benefits, and conservatively $50,000 in lost pension benefits.


Puerto Rico also has a TDI program.


The New Jersey cities are Bloomfield, East Orange, Irvington, Jersey City, Montclair, Newark, Passaic, Paterson, and Trenton.


Public Law 88-352.


Public Law 101-336.

Copyright 2016 by the National Academy of Sciences. All rights reserved.
Bookshelf ID: NBK396402


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