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Family Caregiving

Abstract and Keywords

There is evidence that family caregiving in the United States has been increasing at an unprecedented rate as a result of various societal issues. This entry provides a summary of the scholarly literature regarding elder-caregiving trends, demographics, legislation, challenges, and racial and socioeconomic impacts, as well as the rewards of caregiving. Additionally, the entry provides empirical findings regarding evidence-based interventions associated with family caregiving of older adults.

Keywords: caregiving, community-based care, dependent care, elderly, elder care, older adults

In the United States, the tradition of family caregiving or informal caregiving to older adults is longstanding, and it is broadly defined as unpaid assistance provided by relatives and friends to an older person who is unable to perform routine tasks of daily life, such as meeting personal-care needs and household chores (National Alliance for Caregiving [NAC], 2009). This assistance may take various forms, ranging from performing activities of daily living (ADLS—for example, bathing and feeding), performing instrumental activities of daily living (IADLS—for example, shopping and housekeeping), offering emotional support, and offering financial support (Whitlatch & Noelker, 1996). Family members and friends providing or managing care are typically known as informal caregivers; older adults receiving care are referred to as care receivers or care recipients (Whitlatch & Noelker, 1996).

In the past, research on caregiving to older adults has focused on a single person (that is, a primary caregiver) believed to have the most responsibility in assisting the older person, either by performing tasks alone or managing tasks performed by other care providers. Research documents that other informal providers, typically labeled secondary caregivers, also assist older adults, however (Whitlatch & Noelker, 1996; Chadiha, Feld, & Rafferty, 2011). A more recent national profile on caregivers of frail elders documented the order of primary caregivers by their relationship to older adults: adult children, spouses, and other relatives or friends (Wolff & Kasper, 2006).

Prevalence, Nature, and Extent of Caregiving to Older Adults

According to a report of the AARP Public Policy Institute by Feinberg, Reinhard, Houser & Choula, (2011), approximately 42.1 million family caregivers in 2009 in the United States provided care to an adult, a person 18 years of age or older, with functional limitations. The estimated economic value of family caregivers’ unpaid contributions was approximately $450 billion in 2009, up from an estimated $375 billion in 2007. The $450 billion figure is based on caregivers providing an average of 18.4 hours of care per week to recipients at an average value of $11.16 per hour. In 2009, the average care recipient’s age was 69.3 years.

The prevalence of family caregiving to older adults will continue to grow significantly in the United States due to multiple factors, such as an increased life expectancy, improved medical care and technology, and projected larger proportions of people aged 65 and older—increasing from 13.3% of the national population in 2011 to a projected 21% of the national population in 2040 (U.S. Dept. of Health and Human Services [USDHHS], 2012). An increased life expectancy also portends larger proportions of older adults in the oldest “old” group, those aged 85 and older, with high care needs. While unprecedented numbers of older adults will live healthy lives, others will experience chronic diseases such as arthritis and macular degeneration, resulting in disabilities with aging. As the percentage of three- and four-generation families has increased, an anticipated growing number of “sandwich-generation” women and men are simultaneously caring for aging parents while also raising children or grandchildren. Other factors, such as shorter hospital stays and the increased likelihood of being underinsured or uninsured for longer lengths of time, may also contribute to placing more demands on family caregivers to assist older care recipients who have chronic disabilities.

Legislation and Policies

An amendment to the 1965 Older Americans Act, the National Family Caregiver Support Program, which was enacted by the U.S. Congress in 2000, was the first federal law to acknowledge explicitly the service needs of family members who provide care to older people. This national program lacks adequate funding, thus leaving gaps in caregiver services that vary substantially from state to state, as well as within states (Feinberg, Newman, Gray, & Kolb, 2004).

In 1993, Congress enacted the Family and Medical Leave Act (FMLA), another major federal law to support caregiving families. The FMLA was the first legislation to offer a protective leave to working caregivers while they performed both work and family responsibilities. There are three major gaps in the policy's provisions, however. First, 40% of the workforce work for businesses with fewer than 50 employees, and their employers are not required by the FMLA to provide caregiver leave. Second, most working people cannot afford to take unpaid leave to provide family care. Thus, as a stopgap measure, many states have designed and financed caregiver support services, using both federal and state funds, to expand family leave benefits and to offer respite care or other in-home services to families of disabled older adults. Third, there is great variability and inconsistency in the offering of these services among and within states, and thus expanded federal and state legislation and funding is necessary (Feinberg, Newman, Gray & Kolb., 2004).

In December 2006, Congress enacted the Lifespan Respite Care Act (P.L. 109–442), which creates grants for states to recruit and train respite-care workers in addition to volunteers to provide respite care for family caregivers of children or adults with disabilities. This Act, along with the reauthorization of funds for the National Family Caregiver Support Program (P.L. 109–149) expands funding for services that will specifically assist family members in their caregiving roles.additional legislation is necessary to facilitate scientific evaluations that test model service interventions for caregivers (Feinberg, Newman, Gray & Kolb, 2004).

Caregiver Stress, Negative and Positive Outcomes

Family members who provide care to older persons with chronic or disabling conditions are themselves often at significant risk of health problems. Long-term caregiving may engender stressors that may place caregivers at risk for poor physical, emotional, and mental well-being (Schulz et al., 2002). The characteristics of the caregiver, the characteristics of the care recipient, and the situational context in which the caregiver renders care to an older person may connote stressors associated with the caregiver’s poor well-being (Pinquart & Sörensen, 2003, 2007; Rozario, Chadiha, Proctor, & Morrow-Howell, 2008; Rozario & DeRienzis, 2008). For instance, being older, female, or a spouse caregiver and having greater socioeconomic disadvantage are specific risk factors associated with higher levels of subjective burden, depressive symptoms, and lower levels of physical health in the caregiving role (Pinquart & Sörensen, 2003, 2007). Characteristics of older adults receiving care, such as behavior problems in persons diagnosed with Alzheimer's disease, signify situational stressors that may predispose caregivers to high levels of burden, impaired emotional health, and poor physical well-being. Furthermore, other situational factors—such as the older adult's level of cognitive impairments, the amount of care provided by the caregiver, and the duration of caregiving—are also potential stressors that may be associated with greater burden and higher levels of depressive symptoms for care providers (Pinquart & Sörensen, 2003). As Pinquart and Sörensen (2003) have noted, however, these other situational factors and the greater physical as well as greater cognitive impairments in older adults are associated inconsistently with burden and depressive symptoms. These authors have further explained these inconsistent findings in the association of caregiver burden with situational factors as attributed to different sampling methodologies. That is, the association between burden and care environmental contextual measures is strongest in probability samples as compared to nonprobability samples.

Research has shown that long-term caregiving may have not only negative outcomes but also positive ones for family caregivers (Picot, Debanne, Namazi, & Wykle, 1997; Pinquart & Sörensen, 2003, 2007); both negative and positive caregiving experiences and their risk factors vary not only by the caregivers’ gender, but also by their relationship to the care recipients (Lin, Fee, & Wu, 2012). Research evidence further suggests that the positive and rewarding feelings that persons may have about their roles as caregivers may mediate the undesirable effects of caregiving, such as burden and depression (Pinquart & Sörensen, 2003).

Racial and Socioeconomic Impacts of Caregiving

Over the past two decades, research on the role of race and ethnicity in family caregiving has received increasing attention in light of U.S. population projections (see Dilworth-Anderson, Williams, & Gibson, 2002; Pinquart and Sörensen, 2005). The ethnic-minority population aged 65 and older was projected to increase from 5.7 million in 2000 (16.3% of the older adult population) to 20.2 million in 2030 (28.0% of the older adult population), with the largest projected increases occurring among Hispanic (202%) older adults (USDHHS, 2011). Research shows that caregivers’ ethnic and racial background may influence their experiences and outcomes in the role of caregiving. According to a meta-analysis study addressing ethnic-minority caregiving research, race and ethnicity are factors that may influence a caregiver’s appraisal of stressful caregiving events, his or her perception and use of family support in addition to formal services, and his or her use of coping behaviors (Pinquart & Sörensen, 2005). Furthermore, ethnic-minority older adults are more often impoverished and disabled than their white counterparts (USDHHS, 2011). They rely more heavily on family members for care and hold stronger beliefs of filial responsibility than White American caregivers (Pinquart & Sörensen, 2005).

In an effort to fulfill filial responsibility and also to meet the needs of older persons, ethnic-minority caregivers may undertake their caregiving duties with poorer heath status, less reliance on formal service systems, and greater reliance on religious coping than white caregivers (see Aranda & Knight, 1997; Chadiha, Adams, Biegel, Auslander, & Gutierrez, 2004; Connell & Gibson, 1997). Additionally, many ethnic-minority caregivers provide care even when it may negatively affect their financial well-being. Nationally, 22% of African American and 14% of Hispanic caregivers report experiencing moderate or extreme financial hardships due to home caregiving (NAC & AARP, 2004), and smaller samples of African American family caregivers report not attending to their own health care needs in order to provide eldercare (Owens-Kane, 2007).

Being a member of a certain racial or ethnic group appears to mitigate risks for some negative caregiving outcomes, an observation that varies among African American, Asian American, and Hispanic caregivers as compared to white caregivers. Pinquart and Sörensen (2005) concluded that African American caregivers reported less caregiver burden and lower levels of depression symptoms than white caregivers did; Asian American caregivers, however, reported higher levels of depression symptoms than whites did. Furthermore, all three groups of ethnic-minority caregivers experienced worse physical health than white caregivers. In addition to clarifying the influential role that ethnicity and race may have on caregiver outcomes, Pinquart and Sörensen concluded that other factors, specifically the older adult's illness diagnosis and sampling methodology, also influenced differences in caregiver outcomes, such as burden and depression.

There are various explanations for ethnic and racial differences in caregiving outcomes, such as minority persons' greater acceptance of caregiving as a normative experience and perceiving eldercare as a less intrusive familial role than whites do (Pinquart & Sörensen, 2005). Overall, researchers have concluded that more probability studies using specific theories are required to explain observed differential effects of caregiving outcomes among ethnic minority caregivers and white caregivers (Hargrave, 2006; Pinquart & Sörensen, 2005).

Evidenced-based Interventions

An evolving body of evidence-based intervention research on caregiving outcomes has been catalogued in primary studies, comprehensive reviews, and meta-analysis studies. Intervention studies vary in their focus on outcomes, but a preponderance of caregiver interventions has aimed to minimize the undesirable effects of caregiving on care providers' psychological, social, emotional, and physical well-being. An additional goal of the interventions has been to offer support to caregivers that facilitates not only their ability to meet their individual needs, but also to meet the needs of the care receiver.

Efforts to characterize caregiver interventions can be challenging because of a lack of consensus on an optimal classification system (Biegel, 2006). Schulz (2001) has proposed a three-dimension taxonomy for characterizing caregiver interventions. This taxonomy would include: (a) the “primary entity being targeted,” such as the caregiver, care recipient, and their environmental context; (b) the “primary functional domain being targeted,” such as increased knowledge and skills of the caregiver; and (c) “the method of delivery for interventions” (“intensity or dose”), “delivery mode” at the individual, group, or community level; and “adaptability or controllability of the intervention by either the interventionist or the study participant)” (pp. S113–S114). Extant literature pinpoints different types of caregiver interventions. Through an examination of the effects of 78 caregiver intervention studies, Sörensen, Pinquart, and Duberstein (2002) identified six types of interventions that targeted caregivers and recipients: (a) psychoeducation, (b) supportive interventions, (c) respite or adult day care, (d) psychotherapy, (e) care-receiver training, and (f) multicomponent interventions that combined one or more intervention types. Approximately half of these studies used a psychoeducational model, followed second by studies that used a respite or adult-day-care model. Multicomponent interventions designed to address the manifold needs and challenges of caregivers ranked third in this typology (Sörensen et al., 2002).

Besides the different types of interventions, new technological advancements in telecommunication systems are setting new trends and contributing to unprecedented innovations in effective supportive caregiver interventions that include automated telephone support and Internet web information to caregivers and care receivers. Overall, studies of randomized controlled groups, involving mainly caregivers of persons with dementia, document that telephone-based interventions and Internet video-conferencing interventions are effective in lowering psychological stress, such as depressive symptoms and anxiety of caregivers (Eisdorfer et al., 2003; Mahoney, Tarlow, & Jones, 2003; Marziali & Donahue, 2006; Winter & Gitlin, 2007).

Irrespective of the type or innovation of the intervention, researchers have contended that caregiver interventions should be based in theory and empirical-research results in order to facilitate both replication and generalizability (Pillemer, Suitor, & Wethington, 2003). Although various theories have been employed in caregiver-intervention studies, dimensions of the stress process and coping theory, as well as caregiving appraisal theory, are highly represented in interventions. Use of these theoretical perspectives in intervention research is driven undoubtedly by the proliferation of empirical research on caregiver stress and coping, as well as genuine concerns on the part of researchers for the well-being of caregivers and care recipients (George, 1990; Zarit, 1989). In addition to arguments for more theory-driven interventions, Montgomery (1996) has also argued for greater “attention to efficacy and feasibility” when investigating the effects of interventions, given the various settings in which caregiving occurs (p. S110).

Caregiver-intervention studies have been weighted toward those caregivers who assist older persons with Alzheimer's disease and related forms of dementia (see Bourgeois, Schulz, & Burgio, 1996; Brodaty, Green, & Koschera, 2003; Charlesworth, 2001; Kennet, Burgio, & Schulz, 2000; Richards & Pusey, 2001; Schulz et al., 2002). Substantially fewer intervention studies have focused on nondementia caregivers, particularly those assisting care recipients reported to have other types of diagnoses, or frail older adults (see Lui, Ross, & Thompson, 2005; Toseland & Rossiter 1989; Yin, Zhou, & Bashford, 2002). Most caregiver interventions target women rather than men; this is partly because of the overrepresentation of women assisting elderly persons (see Wolff & Kasper, 2006). Interventions involving dyads of the caregiver-care recipient and both sexes, whether spousal or parent-child, are rarely conducted (Whitlatch, Judge, Zarit, & Fernia, 2006). A later review article on culturally sensitive dementia-caregiver interventions targeting ethnic caregivers concluded that more of these types of interventions are needed (Nápoles, Chadiha, Eversley, & Moreno-John, 2010). The literature relative to the race and ethnicity of caregivers indicates that intervention studies have tended to target white caregivers more than minority caregivers (see Sorensen et al., 2002; Toseland & Rossiter, 1989; Yin et al., 2002). More recent multisite intervention trials for caregivers of persons with dementia, such as Resources for Enhancing Alzheimer's Caregiver Health (REACH), have placed strong emphasis on the inclusion of African American and Hispanic caregivers (Belle et al., 2006; Burgio, Stevens, Guy, Roth, & Haley, 2003; Gitlin et al., 2003).

Although findings are not always consistent, extant evidence of intervention effectiveness is generally positive, with studies focusing on various outcomes that target different groups of caregivers reporting small to moderate statistically significant effects (see Belle et al., 2003; Brodaty et al., 2003; Cooke, McNally, Mulligan, Harrison, & Newman., 2001; Gitlin et al., 2003; Knight, Lutzky, & Macofsky-Urban, 1993; Richards & Pusey, 2001; Schulz et al., 2002; Sörensen et al., 2002; Toseland & Rossiter, 1989; Wisniewski et al., 2003; Yin et al., 2002). Using a meta-analysis of 78 caregiver-intervention studies, Sörensen and colleagues (2002) concluded that caregiver interventions produce statistically significant effect sizes of 0.14 to 0.41 standard deviation units, on average, for such outcomes as caregiver burden, depression, subjective well-being, perceived caregiver satisfaction, ability or knowledge, and care-receiver symptoms. In a different meta-analysis of psychosocial interventions for caregivers of persons with dementia, results from 30 studies involving 34 interventions indicated significant benefits in caregiver psychological distress, caregiver knowledge, any caregiver outcome measure, and patient mood, but no significant reduction in caregiver burden (Brodaty et al., 2003).

Statistically significant intervention effects constitute an important element in evidence-based caregiver interventions. Still, Schulz and colleagues (2002) emphasize the importance of consideration for clinical significance or practical significance. In a review of 43 studies involving intervention research, Schulz and colleagues concluded that many studies with small to moderate statistically significant effects on a variety of outcomes demonstrated strong clinical significance, particularly when viewed in a policy, service, and public health context. Their closing remarks provide a fitting conclusion for this discussion of caregiver interventions. Specifically, in reference to searching for both statistically significant and clinically significant effects, they state: “Finally, and perhaps most important, researchers should set as their goal the achievement of reliable and clinically significant outcomes, preferably in multiple domains. To the extent that we succeed in achieving this goal, we will not only solve a vexing social problem but also advance the field of social/ behavioral intervention research” (p. 599).

Overall, family caregiving situations are complex and comprised of varying social, demographic, and environmental factors that may mediate or moderate outcomes, both negative and positive, of caring for a frail or older person with a chronic disability. Evidence suggests that caregiving outcomes may also be influenced by the national geographical distribution of the elderly, such as living in urban versus rural communities, or residing in states with larger versus smaller percentages of elderly, or residing in communities with adequate eldercare services versus those with inadequate eldercare services (Glasgow, 2000). The role of geographical or community factors on caregiving outcomes remains a relatively unexplored area, thus implying a need for further basic and intervention research studies. Caregiver distress may not end with the placement of an older adult in a nursing home (Schulz et al., 2004) or the death of the older adult, thus further implying that future researchers need to consider expanding effective caregiver interventions beyond the caregiving experience itself. Current and emerging effective interventions that target ethnic-minority caregivers also warrant further replication and expansion, as most intervention studies have not included sufficient samples of ethnic-minority caregivers.

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                                                                                                      Further Reading

                                                                                                      AARP: Caregiving: http://www.aarp.org/families/caregiving/

                                                                                                      Aging Parents and Elder Care: http://www.aging-parents-and-elder-care.com/

                                                                                                      Alzheimer's Society Lesbian Gay Network: http://www.alzheimers.org.uk/Gay_Carers/index.htm

                                                                                                      Caregiver Action Network: http://www.caregiveraction.org/

                                                                                                      Caregiving.com: http://www.caregiving.com/

                                                                                                      CareGuide: http://www.eldercare.com/

                                                                                                      Children of Aging Parents: http://www.fsabc.org/mission/adult

                                                                                                      ElderCare Online: http://www.ec-online.net/

                                                                                                      Family Caregiver Alliance: http://www.caregiver.org/caregiver/jsp/home.jsp

                                                                                                      Family Caregivers Online: http://www.familycaregiversonline.com/

                                                                                                      National Alliance for Caregiving: http://www.caregiving.org/

                                                                                                      Your Aging Parent: http://youragingparent.com/