Interface of Informal and Formal Care

Division of labor also extends to the involvement of formal service providers. This interface between the informal and formal sources of care has been of public policy interest in response to the concern that changing social trends – smaller family size, increased geographic mobility, greater participation of women in the work force, and rising rates of marital disruption – will decrease the availability or willingness of family members to provide care to a disabled elder. Division of formal and informal labor is of concern from a clinical perspective in terms of timely and appropriate use of formal services to ensure the well-being of both care recipient and caregiver.

To address the first question, longitudinal data from the Massachusetts Elder Health Project (Tennstedt et al., 1993) were analyzed to determine if formal services ever replaced or substituted for informal care. We did find evidence of replacement of informal care by formal services in <20% of cases. This occurred when there was a change in the informal caregiving arrangement, particularly loss or change in the primary caregiver. It was also more likely if the primary caregiver had not been a close relative. Typically, the change or loss in caregiver was due to illness or death (an involuntary situation) of the caregiver rather than to competing demands as had been speculated. The data also indicated that this substitution of formal services for informal care was temporary and that informal care was again in place by the next contact. The data from this study show that service substitution is not a major trend and support the fact that formal services are being used as intended. This study was conducted in a state with a well-established, publicly funded home care program, which would have made substitution of formal services for informal care easier. However, the fact that service substitution was temporary and related to availability of the primary caregiver suggests that public funding for home care does not result in widespread and undesired service substitution. There were no data to suggest that large numbers of families were voluntarily withdrawing their help in favor of formal service use. Rather, these publicly funded services appear to be doing what they are intended to do: supporting and sustaining the informal caregiving arrangement or providing care during the disruption of this arrangement to keep the elder in the community.

More recently, data from the HCFA-funded Medicine Alzheimer’s Disease Demonstration show consistent results for dementia caregiving situation (Yordi et al., 1997). This three-year study investigated the effects of expansion of community-based services and case management to over 5000 caregivers of dementia clients to test the effect of service expansion on levels of informal care. In a randomized trial, caregivers in the treatment group used slightly more care over time. However, there were no differences in primary caregiver hours or in the number of tasks by primary or secondary caregivers between caregivers in the treatment group vs. control group. An important finding in this study is the value of case management. That is, a decrease in the number of unmet needs and a better match between assistance needed and services received in the treatment group suggests that case management was beneficial.

In general, formal services are used by relatively few caregivers and care recipients. National data from both the Supplement on Aging to the National Health Interview Survey and the 1982 Long Term Care Survey show that only a small proportion (9% and 5% respectively) receive all their care from formal, community-based providers (Doty, 1986). Further, only 26% of this formal community care is government financed. The remainder is privately paid by older people themselves and their families (U.S. Bureau of the Census, 1983; Soldo, 1983; Liu, Manton and Liu, 1986). Clearly, the vast majority of long term care is provided informally, and privately, at no public cost.

The involvement of a coresiding caregiver consistently has been related to lower use of formal services by elders with (Gill et al., 1998) and without dementing illness (Tennstedt et al., 1993a, 1996). Initial use, or increased use, of formal services usually occurs in the presence of informal care but when care needs increase or when there is a change in the primary caregiver (Tennstedt et al., 1993b, 1996). The use of formal services is more likely when the elder has ADL deficits (Diwan et al., 1997). There are no published longitudinal data about these transitions in dementia care. Similar to findings for elders with physical disabilities, cross-sectional data indicate that use of formal services is greater by elders with dementia who have greater functional impairment, live alone, and have higher incomes (Bass et al., 1992; Caserta et al., 1987; Gill et al., 1998; Mullan, 1993; Penning, 1995). Finally, use of services is lower among minority elders and caregivers than for White caregiving dyads (Tennstedt et al., 1998).