By 2060, one in four Americans will be over the age of 65 (). At the same time, the pool of available family caregivers is expected to decline despite an increase in care need (
Centers for Disease Control and Prevention, 2010
). Considering this trend, the biggest issues facing the nation are: Who will care for us as we age? What does this workforce look like? And how do we best support a diverse network of caregivers? This paper suggests recognizing caregiving as a women's health issue, and integrating formal and informal care as next steps toward comprehensive care policy.Caregiving Is a Women’s Health Issue
A new conversation regarding care labor, gender, and health is needed. This commentary highlights two central points regarding caregiving in the United States. First, in the broadest sense, there are two types of caregivers—those who are paid to provide care and those who are not (usually family members or relatives). Although unpaid caregivers (also referred to as informal or family caregivers) currently provide the majority of care to vulnerable groups (e.g., children and elders), the paid (or formal) care workforce is large, rapidly growing, and its growth holds global policy implications for women's health that extends beyond the United States. The majority of caregivers (both paid and unpaid) are women who are consistently undervalued, and are at an increased risk for negative health outcomes, distress, and burnout (
Lyons et al., 2015
, Schulz and Beach, 1999
). Therefore, caregiving should be recognized as a key issue for women's health, and integration of formal and informal sectors should be considered. The second aim of this paper is to highlight gaps between current policies and practices among caregivers, using a subset of paid caregivers as an example.This paper grapples with important health and labor issues—some clear and others less so—presented by paid care arrangements, as well as the lack of continuity and transparency in how the needs of paid care workers, most of whom are primarily women of color and immigrants, are represented in the public health discourse. Finally, the scope of these issues are presented within an intersectional framework, meaning that processes that give rise to gender, race, nationality, and class inequities cannot be divorced from social and political systems that engender dependency on undervalued labor to provide care for our aging population.
Caregiving in Context
Informal Caregivers
The
National Alliance for Caregiving and AARP, 2009
estimates that the average unpaid caregiver is a 49-year-old married woman who is employed, and caring for a mother not living with her. Working women spend as much as 50% more time providing care than men. Currently, women make up one-half of the workforce but continue to absorb the majority of caregiving responsibilities (Talley and Crews, 2007
).Women devote more than 100 million hours yearly to unpaid care work, a fact that contributes to the growing poverty gap between men and women over the age of 65 (,
Minkler and Stone, 1985
). The value of the informal care that women provide exceeds $450 billion annually (de Meijer et al., 2010
, Reinhard et al., 2015
). Unpaid caregivers face significant economic challenges, stemming from wage loss (reduced work hours), early retirement, and missed career opportunities (Duffy et al., 2013
). Subsequently, women lose approximately $659,139 in earnings over the life course (Hegewisch and DuMonthier, 2015
).Formal Paid Caregivers: The Case of Domestic Workers
Women who are paid to provide care face different, but equally challenging, hardships as unpaid caregivers. Within the paid care workforce, this commentary focuses on the growing segment of women working in homes and informal settings generally referred to as domestic workers. Domestic workers include companions, caretakers, babysitters, nannies, nurses, home health aids, and personal care aids (
U.S. Department of Labor, Bureau of Labor Statistics, 2013
). These workers are among the most vulnerable, most underpaid, and have the least job security in the caregiving industry. They work in private households often under unclear terms of employment, and with little oversight or documentation regarding employer adherence to fair labor practices (U.S. Department of Labor, Bureau of Labor Statistics, 2013
). Historically, domestic workers have also been excluded from the Fair Labor Standards Act (FLSA), the Occupational Safety and Healthy Act, the Family and Medical Leave Act, and minimum wage and overtime requirements.Currently, there are at least 53 million domestic workers worldwide, and it remains a highly feminized sector in the United States (and elsewhere;
International Labour Organization, 2013
). The vast majority of domestic workers are married or living with a partner, and nearly one-half live in households at or below the poverty level (Bercovitz et al., 2011
). Domestic workers are paid low wages, lack fringe benefits, work long hours, and often work without a contract (Stone, 2004
). Because many domestic workers may live with employers to provide continual and intensive care, they play a critical role in the home-care network.Domestic work is closely tied to international migration because it provides an entry point into the U.S. labor market. As a result, workers can be vulnerable to exploitation because they are immigrant, and in some cases, undocumented (
Human Rights Watch, 2006
). For example, hourly wages for citizen domestic workers average $10.19 per hour, whereas undocumented workers are paid $8.33 per hour on average. Sixty-seven percent of live-in caregivers are paid below the minimum wage at a median of $6.15 an hour (Burnham and Theodore, 2012
). To put into context, these wage discrepancies disproportionately affect women, and reinforce gender health disparities in relation to access to work.Caring for Caregivers: Health Implications of Care
The responsibilities and demands associated with providing care, particularly intensive care, has been described as a chronic stressor (
Schulz and Beach, 1999
, Schulz and Sherwood, 2008
). Within the chronic stress model, longitudinal studies have shown that taking on an intensive caregiving role—providing assistance with basic activities of daily living for 20 hours or more per week—results in increased psychological distress, depression, and poorer health, compared with noncaregivers (Hirst, 2005
). For example, women who provide more than 36 hours of care are six times more likely than noncaregivers to experience depressive or anxious symptoms (Bevans and Sternberg, 2012
, Cannuscio et al., 2002
, Pinquart and Sörensen, 2007
). More than one-third of caregivers provide intense care to others while suffering from poor health themselves (Langa et al., 2001
). Compared with noncaregivers, caregivers are twice as likely not to fill a prescription because of cost, and are more susceptible to illness (Lee et al., 2003
). Although much of this research has drawn attention to the health burden of informal caregivers, we know very little of about the health of paid caregivers, who often provide intensive care long-term.Regarding domestic work specifically, working hours are among the longest and most unpredictable in the labor market, directly impacting sleep quality and other important health-promoting behaviors (
Harrington, 2001
, Tucker and Folkard, 2012
). Among the most severe health conditions reported by domestic workers are negative work conditions and related health problems (such as physical and verbal abuse, muscoskeletal strain, and mental health comorbidities) (Malhotra et al., 2013
). In addition, many domestic workers lack health insurance, have limited access to health support services, and have no job protections, such as maternity or sick leave (Stone, 2004
). Given the clear relationship between workplace policies and health (see Borrell et al., 2014
, Palvalko and Henderson, 2006
for reviews), particularly for women, progress toward a comprehensive care policy must include provisions and expanded legal protections for domestic workers.Integrating Formal and Informal Care: Building a Frame for Comprehensive Care Policy
This work makes all other work possible. We do our jobs so they can do theirs.—Patricia Francois, Domestic Workers United, 2016 (
Francois, 2016
)Integrated care refers to a set of methods and models across funding, organizational, service delivery, and clinical levels that create connectivity between care sectors (
Kodner and Spreeuwenberg, 2002
, McAdam, 2008
). Yet federal policy has not fully integrated care for those who need it, nor provided comprehensive reform to address the unmet needs of care providers in both sectors (Eklund and Wilhelmson, 2009
). Currently, there are support options for informal caregivers, including respite programs, workplace flexibility, caregiving training, and paid leave (Reinhard et al., 2015
). However, these same benefits are not afforded to paid caregivers. For example, the FLSA was passed in 1938, and intended to provide minimum wage and overtime protections for all workers. However, it also included some significant exemptions. One exemption was that the act did not apply to domestic workers, given that these positions were considered “companion services” provided to elders or individuals with disabilities (U.S. Department of Labor, Bureau of Labor Statistics, 2013
).As home-based care becomes the new model, these policies remain largely unchanged. Recent efforts have resulted in minimally updated provisions, the effects of which are still unclear. In 2015, the U.S. Department of Labor sought to remedy wage and overtime exclusions by extending FLSA coverage to a portion of paid care workers who perform medically related services (e.g., home health aids and other specialized care workers who assist older adults), as well as revising the type of in-home care covered under the FLSA. However, workers engaged primarily in companionship services (providing company, visiting, or engaging in hobbies) and providing care incidental to such activities will still be exempt from the FLSA's minimum wage and overtime requirements (
U.S. Department of Labor, Bureau of Labor Statistics, 2015
). In addition, no leave protections for personal life events (e.g., maternity, illness, family care) are available.Therefore, despite some advances, fair labor policy for domestic workers remains unrealized. Aside from this, enforcement of any regulation is a significant challenge, because employer compliance is subject to limited oversight, highly informal employment relationships, and a lack of awareness about legal entitlements among workers. Moreover, even when state laws apply, domestic workers may lack any realistic means of insisting compliance. This and other factors may explain why domestic workers are expected to provide around-the-clock care when entitled to a weekly day of rest, or employers provide low wages despite minimum wage requirements (
Brown, 2011
). To encourage legislation that protects the rights of all care workers, several strategies should be considered.Recommendation 1: Intersectional Approach for Reframing Caregiving
An intersectional approach means evaluating the caregiving workforce and identifying specific subgroups who may be excluded from existing policy (
Crenshaw, 1991
). In a practical sense, this includes first collecting large-scale data about both formal and informal care work and second, identifying exclusion gaps. Supporting policy decisions that protect all workers under employment and labor laws is also critical. For example, many state laws do not cover vacation or sick leave for domestic workers, nor do they provide regulatory channels to address violations of minimum wage requirements, overtime compensation, unhealthy work environments, or remedies for discrimination and abuse (Romero and Perez, 2016
). Because work–family advocacy focuses on policies that have a clear benefit for salaried workers providing care (e.g., paid leave), similar provisions for paid caregivers should be available. Shifting mental models about the way in which care labor is valued is one step toward this goal. Increasing public awareness and education will help caregivers, employers, and legislators understand the current disconnection between caregiver health and access to resources.Recommendation 2: Conceptualizing Caregiving as a Complex System: Linking Immigration, Labor Markets, and Health
Decisions about long-term care do not arise in a vacuum; deciding who will provide care for an aging spouse or family member involves several considerations. Systems thinking can elucidate organizational structures that either encourage or deter use of formal or informal care (
Kaye, 2014
). In either case, all caregiving should be equally supported. Family caregivers have a right to adequate support and paid caregivers providing in-home and community-based services should be able to carry out their jobs with respect and fair compensation. Framing caregiving as a complex system better articulates the needs of caregivers, and may help to synthesize knowledge about caregiver health disparities as well as effective interventions. Finally, documenting the extent to which paid workers are covered by key human rights and labor legislation requires a commitment to accountability and coordination of global statistical data from multiple sources.Recommendation 3: Recognizing the Temporality of Care and Care Fluidity
Although women have entered the workforce in increasing numbers, the need for family caregiving has not slowed. The demand for caregivers has resulted in a number of working women who are dual or sandwich caregivers (
Perkins and Haley, 2010
). This discussion concludes with an introduction to “care fluidity,” the tendency to experience repeated shifts in providing care over time. The role of caregiver is not binary or static, as it is often presented in research, but represents a role that may be entered into unexpectedly for various periods of time, and for one or more recipients.A primary challenge in measuring caregiver health effects has been a tendency to describe caregiving as a singular, one-dimensional experience (
Haley et al., 2009
, Schulz, 2008
). Yet caregiving is not singular; adults typically transition in and out of care roles over the life course (Palvalko and Woodbury, 2000
). Research suggests that these transitions are associated with psychological distress and poorer health, even when caregiver tasks cease (Choi and Marks, 2006
, Hirst, 2005
, Musil et al., 2013
). Nearly one-half of Americans aged 40 to 50 have multiple caregiving responsibilities (e.g., child and aging parent), and more than 40% of paid domestic workers maintain dual caregiving obligations as well (Parker and Patten, 2013
). Thinking about caregiving as a fluid process can be useful, particularly in describing the experiences of those who provide both formal and informal care.Policy and support programs might also be improved by this approach. Future initiatives should not only target current caregivers, but those who have provided care in the past or may be expected to do so in the future. For example, relatives can now be hired as a paid caregiver, covered by Medicaid and some consumer-directed models. Although these new programs provide options that may be preferred to paid domestic care, important questions remain. Will care-for-pay models offset the need for paid domestic work in the future and, besides providing payment, how will these programs provide adequate training and support for new relative caregivers? Care-for-pay models should be carefully evaluated in tandem with traditional long-term care services and new incentives (e.g., Caregiver Tax Credits and Family and Medical Leave Act expansions for caregiving) (
Carlson et al., 2007
, Simon-Rusinowitz et al., 2010
).Conclusion
Americans will experience greater demands for caregiving in coming years owing to the rapidly growing elder population and desires to age in place. As home- and community-based health models become more accessible, older adults will increasingly opt to receive in-home care, creating an unprecedented demand for paid care labor.
Additional research is warranted to better understand the network that is expected to provide care in the coming years, and the impact for women's health. First, studies providing an intersectional approach to address gaps in caregiving policy would be useful. Second, system approaches can shift the frame of caregiving beyond interpersonal interactions to consider how all care providers can be better supported in a contemporary health-care system. Finally, acknowledging the fluid and nonbinary nature of caregiving is important for measuring the impact of care on health. In translating research to policy, models that capture the complexity of caregiving along with efforts to account for enforcement and regulation will help to develop a comprehensive care policy for all caregivers. The development of such models will likely illuminate new points of intervention, as well as highlight a novel perspective of caregiving.
References
- An overview of home health aides: United States, 2007.National Health Statistics Report. 2011; 34: 1-31
- Caregiving burden, stress, and health effects among family caregivers of adult cancer patients.JAMA. 2012; 307: 398-403
- Influence of macrosocial policies on women’s health and gender inequalities in health.Epidemiologic Reviews. 2014; 36: 31-48
- Raising Brooklyn: Nannies, childcare and Caribbeans creating community.NYU Press, New York2011
- Home economics: The invisible and unregulated world of domestic work.National Domestic Workers Alliance, Center for Urban Economic Development, University of Illinois, Chicago2012
- Reverberations of family illness: A longitudinal assessment of informal caregiving and mental health status in the Nurses’ Health Study.American Journal of Public Health. 2002; 92: 1305-1311
- Effects of cash and counseling on personal care and well-being.Health Services Research. 2007; 42: 467-487
- Caregiving: A public health priority.2010 (Available:) (Accessed: January 7, 2016)
- Transitions to caregiving, marital disagreement, and psychological well-being: A prospective U.S. national study.Journal of Family Issues. 2006; 27: 1701-1722
- Mapping the margins: Intersectionality, identity politics and violence against women of color.Stanford Law Review. 1991; 43: 1241-1299
- The value of informal care – A further investigation of the feasibility of contingent valuation in informal caregivers.Health Economics. 2010; 19: 755-771
- Counting care work: The empirical and policy applications of care theory.Social Problems. 2013; 60: 145-167
- Outcomes of coordinated and integrated interventions targeting frail elderly people: A systematic review of randomized controlled trials.Health and Social Care in the Community. 2009; 17: 447-458
Francois, P. (2016). Whose movement? Talk presented at CUNY Center for Place, Culture, and Politics Conference, March, 2016, New York, New York.
- Problems and benefits reported by stroke family caregivers: Results from a prospective epidemiology.Stroke. 2009; 40: 2129-2133
- Health effects of shift work and extended hours of work.Occupational Environmental Medicine. 2001; 58: 68-72
- The gender wage gap: 2015. Earnings differences by race and ethnicity.2015 (Institute for Women’s Policy Research. Available:) (Accessed: May 6, 2016)
- Carer distress: A prospective, population-based study.Social Science & Medicine. 2005; 61: 697-708
- Swept under the rug: Abuses against domestic workers around the World, 18(7).2006 (Available:) (Accessed: August 19, 2016)
- Domestic workers across the world: Global and regional statistics and the extent of legal protection.2013 (Available:) (Accessed: August 19, 2016)
- Toward a model of long-term services and supports system: State policy elements.Gerontologist. 2014; 54: 754-761
- Integrated care: Meaning, logic, applications, and implications – A discussion paper.International Journal of Integrated Care. 2002; 2: e12
- National estimates of the quantity and cost of informal caregiving for the elderly with dementia.Journal of General Internal Medicine. 2001; 16: 770-778
- Caregiving and risk of coronary heart disease in U. S. women: A prospective study.American Journal of Preventive Medicine. 2003; 24: 113-119
- The effect of transitions in caregiving status and intensity on perceived stress among 992 female caregivers and noncaregivers.Journal of Gerontological Sciences A: Biological Sciences. 2015; 70: 1018-1023
- Health issues of female foreign domestic workers: A systematic review of the scientific and gray literature.International Journal of Occupation Environmental Health. 2013; 19: 261-277
- Frameworks of integrated care for the elderly: A systematic review.Canadian Policy Research Networks, Ontario2008
- The feminization of poverty and older women.Gerontologist. 1985; 25: 351-357
- Longitudinal analysis of resourcefulness, family strain, and depressive symptoms in grandmother caregivers.Nursing Outlook. 2013; 61: 225-234
- Caregiving in the U.S.Author, Washington, DC2009
- Combining care work and paid work: Do workplace policies make a difference?.Research on Aging. 2006; 28: 359-374
- Social roles as process: Caregiving careers and women’s health.Journal of Health and Social Behavior. 2000; 41: 91-105
- The sandwich generation: Rising financial burdens for middle-aged Americans.2013 (Pew Research Center, Available:) (Accessed: June 1, 2016)
- Compound caregiving: When lifelong caregivers undertake additional caregiving roles.Rehabilitation Psychology. 2010; 55: 409-417
- Correlates of physical health of informal caregivers: A meta-analysis.Journal of Gerontological Sciences: Series B, Psychological Sciences Social Sciences. 2007; 62: 126-137
- Valuing the invaluable: 2015 update.2015 (AARP Policy Institute, Available:) (Accessed: July 22, 2016)
- Conceptualizing the foundation of inequalities in care work.American Behavioral Scientist. 2016; 60: 172-188
- Physical and mental health effects of family caregiving.American Journal of Nursing. 2008; 108: 23-27
- Caregiving as a risk factor for mortality: The Caregiver Health Effects Study.JAMA. 1999; 282: 2215-2219
- Physical and mental health effects of family caregiving.American Journal of Nursing. 2008; 108: 23-27
- What does research tell us about a policy option to hire relatives as caregivers?.Public Policy & Aging Report. 2010; 20: 32-37
- The direct care worker: The third rail of home care policy.Annual Review of Public Health. 2004; 25: 521-537
- Framing the public health of caregiving.American Journal of Public Health. 2007; 97: 224-228
- Working time, health, and safety: A research synthesis Paper.2012 (Conditions of Work and Employment Series No. 31 (Geneva, ILO). Available:) (Accessed: August 19, 2016)
- The older population: 2015.2015 (Available:) (Accessed: August 1, 2016)
- U.S. Court of Appeals Upholds DOL Ruling.2015 (Available:) (Accessed: October 20, 2016)
- Wage and hour division fact sheet.2013 (Available:) (Accessed: October 20, 2016)
Biography
H. Shellae Versey, PhD, is a psychologist. Her research focuses on the intersection of social determinants of health, gender, and an aging society. She is Assistant Professor, Department of Psychology, Wesleyan University. She lectures on healthy cities, community-engaged research, and aging outcomes among women.
Article info
Publication history
Published online: March 01, 2017
Accepted:
January 26,
2017
Received in revised form:
January 25,
2017
Received:
October 26,
2016
Identification
Copyright
© 2017 Jacobs Institute of Women's Health. Published by Elsevier Inc.
