Family Caregiving and Social Policy
Karen M. Robinson and Susan C. Reinhard
“No government can love a child, and no policy can substitute for a family’s care. But at the same time, government can either support or undermine families as they cope with moral, social and economic stresses of caring. …”
—Hillary Rodham Clinton
It is well established that the American population is aging. The oldest of 79 million baby boomers, born between 1946 and 1964, will reach age 65 in just a few years. With the graying of the population, family caregivers will be needed more than ever to provide services to persons with chronic illness for increasingly long periods of time (Stevenson, 2008). Family caregivers play a valuable, irreplaceable role in our society, particularly in supporting people who have long-term needs for services and supports.
Unpaid Value of Family Caregiving
Family caregivers’ contributions have great enormous value not only to their loved ones, but also to the United States health care system. Caregivers provide high-quality care at low cost, including care that is consistent with patient preferences. National estimates indicate that 44 million Americans over the age of 18 provide support to older adults with chronic illnesses who live in the community. In 2007, the economic value of family caregiving reached $375 billion—more than the total national spending for Medicaid, including federal and state contributions and medical and long-term care that totaled $311 billion in 2006 (Gibson & Houser, 2008).
Among noninstitutionalized persons needing assistance with activities of daily living, two-thirds depend solely on family and friends, and another one-fourth supplement family care with services from paid providers (Liu, Manton, & Aragon, 2000). The work of family caregivers is essentially irreplaceable, mainly because providing an alternate source of care is difficult and costly. There are not enough long-term care workers to replace contributions of family caregivers (Maslow, Levine, & Reinhard, 2006). Family caregiving provides an unpaid workforce critical to maintaining the long-term care system. The value of this unpaid care is stunning, but it exacts a high, often hidden cost on the health of caregivers. The risk related to caregiving is enormous, even to caregivers who are initially in good health.
Caregiving as a Stressful Business
The association between physical and mental health and being a family caregiver are well established (Pinquart & Sorensen, 2007). Caregiving has all the features of a chronic stress experience as it creates physical and psychological strain over an extended period of time. Caregiving situations are accompanied by high levels of unpredictability and uncontrollability. Thus, caregiving has the capability to create secondary stress in multiple domains of life, such as in work and family relationships. Caregiving fits the definition for chronic stress so well that it is used as a model for studying the health effects of chronic stress (Schulz & Sherwood, 2008).
Evidence indicates that most caregivers are not prepared for caregiving and often provide care with little or no support (National Alliance for Caregiving [NAC] & AARP, 2009; Family Caregiver Alliance [FCA], 2006). More than one-third of caregivers provide intense care to others while suffering from poor health themselves (Navale-Waliser, et al., 2002). An influential factor in a caregiver’s decision to relocate a loved one to a nursing home is the caregiver’s own failing physical health (Buhr, Kuchibhatia, & Clipp, 2006).
Related to mental health, caregivers consistently report higher levels of depressive symptoms and mental health problems when compared to their non-caregiving peers (Pinquart & Sorensen, 2003). Estimates identify that between 40% and 70% of caregivers have clinically significant symptoms of depression, with approximately one-quarter to one-half of these caregivers meeting the diagnostic criteria for major depression (FCA, 2009).
Research not only documents negative physical and mental health, but also negative outcomes from caregiving. Caregivers report that they suffer from high levels of stress and frustration (Pinquart & Sorensen, 2003), with resultant feelings of anger, guilt, exhaustion, and helplessness as a result of providing care (Center for Aging Society, 2005). Caregiving can also result in a loss of self-identity, with less time for leisure and enjoyable activities. Constant worry or feelings of uncertainty are identified as caregivers experience less control over their lives when compared to non-caregivers (Pinquart & Sorensen, 2003).
Women compose about two-thirds of all unpaid caregivers (Johnson & Wiener, 2006; NAC & AARP, 2009). In a national survey on caregiver health, about 1 in 5 (24%) women surveyed had mammograms less often because of caregiving (NAC & Evercare, 2006). They also reported higher levels of depression and anxiety, and lower levels of subjective well-being, life satisfaction, and physical health when compared to male caregivers. Evidence identifies that women caregivers fare worse than their male counterparts (Pinquart & Sorensen, 2006).
A 2009 survey (NAC and AARP, 2009) found almost one-third (34%) of caregivers were men; in 1997, 27% were men. Reasons for the increased number of men who take on caregiving were smaller families, longer life spans, more women working outside the home, and greater geographic distance among family members. More male caregivers were working full-time (60%) compared to women (41%).
As family caregivers struggle to care for their loved ones, their own physical and mental well-being is put at risk. Overall caregiver health is quickly becoming a public health issue that requires focused attention from health professionals, policymakers, and caregivers themselves to improve the health and quality of life of family caregivers who are dedicated to the care of others (Talley & Crews, 2007; FCA, 2009). Because of public interest in health care reform, the role of informal caregivers must receive more attention in public policy initiatives regarding how to better support family caregivers.
Supporting Family Caregivers
Long-term family caregiving is risky business. Caregivers make great sacrifices to provide this care, enduring negative effects on their physical and mental health, as well as burnout, strain, and depletion of financial resources. More than one-half of caregivers caring for someone 50 years of age and older spend more than 10% of their income on expenses—an average of $5531. Caregivers (34%) were forced to use some of their savings to cover expenses (NAC, 2009). Caregivers (78%) say more help and information is needed. The demand for caregiving information has increased since 2004 (77% versus 67% in 2004). Of six national policies and programs (tax credits, vouchers to pay minimum wage for some caregiving hours, respite services, transportation, assessment, and paid leave of absence from work) presented to caregivers as potential help, the most popular was a tax credit of $3000. The majority of caregivers (56%) rated the tax credit as their preferred policy strategy (NAC & AARP, 2009). State and federal investments in family caregiver support are needed now more than ever. A number of policy solutions could help; some of these solutions are embedded in larger reform areas, and some are more specific to family caregivers. Table 30-1 summarizes several high-priority recommendations (Reinhard, Montgomery, & Gibson, 2008).
TABLE 30-1
High-Priority Policy Recommendations to Support Family Caregivers
| Categories of Support | Federal | State |
| Direct Services, such as Respite, Information, and Referral | ||
| Ensure that all publicly funded log-term care programs cover services, such as respite care and adult day services, that supplement caregiving by family, friends, and others | x | x |
| Provide adequate funding for the Lifespan Respite Care Program | x | |
| Expand funding for the National Family Caregiver Support Program | x | |
| Increase state and federal funding for respite care | x | x |
| Offer additional services geared to special needs of caregivers, such as support groups and mental health counseling | x | x |
| Ensure that services and supports reflect needs of diverse caregiver populations | x | x |
| Assessment of Caregivers’ Needs | ||
| Stimulate development and delivery of caregiver assessment protocols across all care settings to develop effective support plans for both care recipient and caregiver | x | x |
| Require assessment of caregiver’s willingness and ability to provide care prior to hospital discharge | x | x |
| Reimburse health care professionals for family caregiver assessment, care management, and training | x | x |
| Education and Training | ||
| Direct caregivers to appropriate training opportunities, particularly to ensure a safe transition from hospital to home or nursing home to home; funding training for caregivers | x | x |
| Financial Relief | ||
| Establish and coordinate policies to pay relatives and friends who care for people with disabilities as part of a plan of services and supports | x | |
| Permit payment of family caregivers through consumer-directed models in publicly funded programs | x | |
| Expand programs that permit caregivers to direct the services that are offered to them (consumer direction for caregivers’ services) | x | |
| Amend Supplemental Security Income rules so they do not reduce benefits for caregivers living with family members | x | |
| Assure continued health insurance benefits for caregivers forced to leave employment or during leaves of absence due to caregiving duties | x | x |
| Create incentives for increased public awareness about existing programs and policies | x | |
| Tax Implications | ||
| Provide a refundable Long-Term Services and Supports tax credit for caregivers to give some relief from the high costs of caregiving | x | x |
| Encourage employers to take advantage of existing tax incentives, such as flexible spending accounts for dependent care, to provide dependent- or family-care benefits | x | |
| Workplace Flexibility, Including Family and Medical Leave Act | ||
| Extend the Family and Medical Leave Act to provide paid leave and cover more workers for longer periods | x | |
| Provide paid family leave for caregiving | x | x |
| Caregiver Rights; Legal Protection | ||
| Ensure that caregivers as well as patients are aware of the patient’s right to appeal hospital discharge, skilled nursing facility, and Medicare home health care decisions | x | x |
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
