Academic journal article Health Care Financing Review

Caregiver Supports: Outcomes from the Medicare Alzheimer's Disease Demonstration

Academic journal article Health Care Financing Review

Caregiver Supports: Outcomes from the Medicare Alzheimer's Disease Demonstration

Article excerpt


The support network which can augment a primary caregiver's efforts to maintain a person with dementia at home includes both informal caregivers and formal service providers. Primary caregivers of flail elderly people spend, on average, 4 hours per day in caregiving activities (Stone, Cafferata, and Sangl, 1987). Assistance with the primary caregiving role, provided by other family members or friends, can buffer or mediate the primary caregiver's response to stressful aspects of caregiving (Pearlin, 1990). Services provided by paid non-family service providers, can also reduce the strain of caregiving by offering a respite from this role.

Historically, most of the long-term care(LTC) for functionally impaired elderly has been provided by informal caregivers (Shanas, 1979; Rivlin and Wiener, 1988). The national Long-Term Care Informal Caregiver Study found approximately 2.2 million caregiver's providing unpaid assistance to 1.6 million noninstitutionalized frail elderly (Stone, Cafferata, and Sangl, 1987). Soldo and Manton (1985) found that extremely disabled elderly living in the community turn to the formal care system only after care needs become more than primary and ancillary caregivers can handle alone.

One of the main barriers to the expansion of in-home and community-based care has been fear on the part of policymakers that paid care will erode the informal care being received by impaired elderly (Congressional Budget Office, 1977; Health Care Financing Administration, 1981). The critical concern is the extent to which families may shift care responsibilities, and the associated costs, to the public sector if expanded in-home and community-based services are available through public funding. One study estimated that over 27 million unpaid days of informal care are provided each week (Liu, Manton, and Liu, 1985).

The literature suggests several different ways that the introduction of formal services may impact on informal caregiving (Greene, 1983; Litwak, 1985; Noelker and Bass, 1989). Informal caregiving could be entirely replaced by formal services; the overall level of informal caregiving could be reduced; the level of informal caregiving could be shifted from one type of care to other types of care with which the caregiver is more comfortable providing or better able to provide; or informal care may be extended for longer periods of time, possibly increasing the total effort over time even when less care is provided in the short run.

Research from earlier LTC demonstrations indicates that a major shift from unpaid to paid care is unlikely. A re-examination of all the home and community-based LTC studies conducted between 1960 and 1988 (Hanley, Weiner, and Harris, 1991), found that, of 53 evaluations that studied the impact of formal services on the amount of informal care provided, 45 showed no significant change in informal care, 7 showed a statistically significant increase in informal care, and 4 found a statistically significant decrease in informal care. When reductions in caregiving were found, they reflected a redirection of family help rather than a reduction in their overall effort.

The general consensus among studies examining the substitution of formal care for the provision of informal care has been that the effect is small or statistically nonsignificant, see for example, the California, Chicago, and Minnesota Home Care Programs (Smith-Barusch and Miller, 1985), the Channeling Demonstration (Christianson, 1986), the Hospital Program Community Care Project in the Chicago area (Edelman and Hughes, 1990), and the Minnesota Pre-Admissions Screening/ Alternative Care Grants Program (Moscovice, Davidson, and McCaffrey, 1988).

Studies focusing on persons with dementia have found that about half of the primary informal caregivers provide care with no outside assistance (Gwyther, 1989). Further, even when formal services were offered at low cost, empirical findings indicate caregivers of persons with dementia consistently underutilized the formal services available (Biegel et al. …

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