adult day care, caregiver, illness, Medicaid, mental disability, nursing home, older adult, respite care, well being
Adult Day Care Centers, Aged, Caregivers, Child Welfare, Medicaid, Mentally Disabled Persons, Nursing Homes, Respite Care
Respite care refers to short-term supervisory, personal, and nursing care provided to impaired older adults, typically those who cannot be left alone because of physical or mental disabilities. The purpose of respite care is to provide the informal caregivers of impaired older adults with temporary relief or respite from their caregiving responsibilities. Providing support to the caregivers of impaired elderly is an important strategy for well-being, although some studies have found that a relatively small number of caregivers utilize supportive services (Wolff, Spillman, Freedman, & Kasper, 2016). Of all the services designed for community-dwelling impaired older adults, respite care is the most firmly rooted in recognition of the social, primarily family, context within which caregiving occurs.
There are three primary forms of respite care: in-home respite care, temporary residential respite care, and adult day care. All three forms provide very different experiences for the care recipient. Adult day care is provided in a community setting to multiple impaired older adults. Depending on the caregiver's preference and ability to pay for the service, as well as the care recipient's illness severity, weekly day care schedules range from 1 to 5 days. The cost of adult day care varies, depending on location, but on average runs approximately $67/day. In-home respite care is provided in the impaired older adult's home by a respite care worker. The length and frequency of in-home respite visits vary widely, from companionship to skilled care. Respite care workers are generally paid an hourly wage, and the median per day cost of in-home care is $126. Inpatient respite care involves a short-stay placement, usually 2 weeks, in a hospital or nursing home. Most respite care services are paid out of pocket, although some resources are available for low-income (e.g., Medicaid) households and may be a benefit provided by long-term care insurance.
The need for respite care services emerged primarily because of overwhelming research evidence that caregivers are at substantial risk for negative physical, emotional, and financial consequences (National Alliance for Caregiving [NAC] & AARP Public Policy Institute, 2015; Wolff et al., 2016). Research demonstrates that the older persons at greatest risk of nursing home placement are those without families and those whose families are no longer willing or able to tolerate the demands of home care. In some studies, caregivers’ levels of burden predict institutionalization of the impaired relatives for whom they care (Eska et al., 2013). Thus respite care has the primary purpose of decreasing caregiver stress and permitting the impaired elder to remain in the community and delay institutionalization, although recent reviews have not supported that link (Maayan, Soares-Weiser, & Lee, 2014; Vandepitte et al., 2016).
The number of respite care programs in the United States continues to grow. The greatest impetus for the growth of respite care was the reauthorization of the Older Americans Act (OAA) in 2000, which included the National Family Caregiver Support Program (NFCSP). As a result, states applying for funds to support services to older adults are required to implement respite care programs through local area agencies on aging. Further support for respite programs came from the Lifespan Respite Care Program that was authorized by Congress in 2006 to support coordinated systems of community-based respite care services for family caregivers. The intent, to develop infrastructures at the state and local level, was to increase efficiency and decrease duplication of services. Beginning in 2009, Congress appropriated approximately $2.5 million in funds to implement programs to fill the service gaps for respite and to develop outcome measures. In 2011, the legislation was due for reauthorization (Lifespan Respite Reauthorization Act of 2011 [H.R. 3266]) and was introduced and referred to the House Energy and Commerce Committee, where no action was taken. The bill was reintroduced in 2017 (H.R. 2535) for reauthorizations and is currently being considered by the Congressional Subcommittee on Health.
Research examining the impact of respite care services on caregiver and care recipient outcomes continues to expand. Research findings are inconsistent and many of the studies lack the rigorous design necessary to assess outcomes in relation to evidence-based practices (Kirk & Kagan, 2015; Maayan et al., 2014; Vandepitte et al., 2016). Despite the limitations of the research, respite care appears to provide some benefit to caregivers.
Much of the research has related to the use of respite care with cognitively impaired elderly. The use of adult day care is the type of respite care most investigated. Overall, adult day care seems to decrease caregiver burden and provide some positive effects on care recipient behavior. In a systematic review, Vandepitte et al. (2016) noted that adult day-care services accelerate nursing home placement, but cautioned that this finding was likely because of multifactorial issues and concluded that multiple strategies should be implemented with respite to alleviate burden. It is difficult to conclude a causal relationship between respite care and institutionalization. A more likely scenario is that highly stressed caregivers are more likely to both increase the use of community-based services and subsequently seek institutional placement for the care recipient.
Evidence for the effectiveness of respite is more mixed. Nonetheless, recent evaluations of adult day care and in-home respite report some success in reducing caregiver burden or increasing caregiver well-being (Mason et al., 2007), but the effects of respite care on caregivers vary, depending on the specific outcome under investigation. Although temporary residential respite seems to have some positive health and well-being effects on the caregiver, care recipients often experienced more negative consequences (Vandepitte et al., 2016).
More recent research has focused largely on the factors that make respite care services more or less attractive to caregivers and the characteristics of caregivers who do and do not use respite care services. It is widely recognized that specific features of respite care programs can have significant effects on utilization. Much of the literature notes that respite services are underutilized (Neville, Beattie, Fielding, & MacAndrews, 2015; Phillipson, Jones, & Magee, 2014). Flexibility of respite schedules, cost of respite care, and the rapport established between respite workers and their care recipients, for example, affect caregivers’ decisions to use respite care and the length and frequency of use. Demographic and social status factors also are related to respite care use. In general, high levels of education, income, and community involvement are related to greater utilization of respite serves. There also are racial/ethnic differences in patterns of respite utilization. African Americans often report “no need for” or are not aware of respite services more often than other ethnic groups (Casado, van Vulpen, & Davis, 2011). These findings may be related to cost, lack of access, cultural differences, or disparities in health literacy.
Recent recommendations for a research agenda on respite care (Kirk & Kagan, 2015) call for methodological rigor in design to assess impact. In addition, studies should address family outcomes, cost–benefit analysis, access to respite programs, and provider competency. There is general agreement among researchers and service providers that too few caregivers use respite care and that those who initiate use do so too late in the care receiver's illness or use too few services to make a sizeable reduction in caregiver burden.
See also Adult Day Services; Caregiver Burden.