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. 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, inpatient respite care, and adult day care. All three forms provide “time off” for caregivers but 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. Cost of adult day care varies depending upon location but on average runs approximately $61/day. In-home respite is provided in the impaired older adult's home by a respite care worker. Length and frequency of in home respite visits vary widely, dictated by caregivers’ desires and ability to pay for the service. Respite care workers are generally paid by an hourly wage. 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 there are some resources available for low-income (e.g., Medicaid) households and may be a benefit provided by long-term care insurance.
The need and rationale for respite care services emerged primarily because of overwhelming research evidence that caregivers are at substantial risk for psychological distress, clinical depression, social isolation, and perhaps exacerbation of physical illness and financial problems (Kim, Chang, Rose, & Kim, 2011). 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 addition, caregivers’ levels of stress, physical strain, and financial hardship predict institutionalization of the impaired relatives for whom they care (Spillman & Long, 2009). Thus, respite care has the primary purpose of decreasing caregiver stress, permitting the impaired elder to remain in the community and delay institutionalization.
The number of respite care programs in the United States continues to grow. The greatest impetus to 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 of adding the NFCSP to the OAA, 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 funds to implement programs to fill the service-gaps for respite and develop outcome measures. In 2011, the legislation was due for reauthorization [Lifespan Respite Reauthorization Act of 2011 (HR 3266)] and was introduced and referred to the House Energy and Commerce Committee where no action was taken. The bill will need to be reintroduced.
Research examining the impact of respite care services on caregiver and care-recipient outcomes is growing slowly. Research findings are inconsistent and many of the studies lack the rigorous design necessary to assess outcomes (Lee & Cameron, 2004; Mason et al., 2007). Despite the limitations of the research, respite care appears to provide some benefit to caregivers.
The strongest and most plentiful evidence of decreased caregiver burden and increased caregiver satisfaction has been found for adult day care services (Gaugler et al., 2003). Evidence for the effectiveness of other types of respite is more mixed. The effects of respite care on caregivers also vary, depending on the specific outcome under investigation. Nearly all studies that examine caregiver satisfaction with respite care report positive findings (Mason et al., 2007). It is more difficult to demonstrate positive effects in terms of reducing caregiver burden, increasing caregiver well-being, and reducing caregiver depression and anxiety. Nonetheless, recent evaluations of adult day care and in-home respite typically report some success in reducing caregiver burden or increasing caregiver well-being.
In contrast to studies that focus on the satisfaction and well-being of caregivers, there is no evidence that respite care use delays institutionalization of the impaired older adult. Some studies have found that use of informal caregiving decreases institutionalization while other studies support a relationship between caregiver stress and nursing home placement (Spillman & Long, 2009). 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 use of community-based services and subsequently seek institutional placement for the care recipient.
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. Flexibility of respite schedules, cost of respite care, and the rapport established between respite workers and their care recipients, for example, effect 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 and ethnic differences in patterns of respite utilization. African Americans often report “no need for” or “not aware of” respite services more often than other ethnic groups (Casado, Van Vulpen, & Davis, 2012). These findings may be related to cost, lack of access, or disparities in health literacy.
For the foreseeable future, the major challenges in respite care will be additional research designed to assess the impact of respite care on caregivers and, in the service sector, overcoming barriers to use. There is general agreement among researchers and service providers that too few caregivers use respite care, and that those who do, initiate use too late in the care receiver's illness trajectory or use too few services to make a sizeable reduction in caregiver burden.
See also Adult Day Services; Caregiver Burden.
- Unmet needs for home and community-based services among frail older Americans and their caregivers. Journal of Aging and Health, 23, 529-552. ; ; (2011).
- Adult day service use and reductions in caregiving hours, effects on stress, and psychological well-being for dementia caregivers. International Psychogeriatrics, 15, 37-58. ; ; ; ; ; (2003).
- Predictors of caregiver burden of individuals with dementia. Journal of Advanced Nursing, 68, 846-855. ; ; ; (2011).
- Respite care for people with dementia and their carers. Cochrane Database of Systematic Reviews, 2004(1), 1-20. ; (2004).
- The effectiveness and cost-effectiveness of respite for caregivers of frail old people. Journal of the American Geriatric Association, 55, 290-299. ; ; ; ; ; ; (2007).
- Does high caregiver stress predict nursing home entry? Inquiry, 46, 140-161. ; (2009).
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