Prospective Outcomes of Informal and Formal Home Care: Mortality and Institutionalization. 1.1 Background and Hypotheses

12/19/1990

The prevalence of impaired functioning in carrying out Activities of Daily Living (ADL) appears to progress in an monotonic pattern over the life course of the elderly population in the U.S. Analyzing data from the 1984 Supplement on Aging of the National Health Interview Survey, Dunlop and Wells (1988), found that elderly persons 65-69 years of age experience, on average, 0.3 ADL dependencies, while those 95-99 report 2.1 ADL dependencies. Consequently, barring unforeseen medical breakthroughs, the number of persons in the population with ADL dependencies will increase as the number of older elderly individuals continues to rise.

Meeting these needs with a medical service model over the long-term often is inappropriate, and institutionalization may be expensive and may lead to more rapid functional or physiological decline by encouraging the dependency characteristic of institutional environments. As is now widely recognized, many impaired elderly individuals already receive help from friends, neighbors, and especially relatives (Stone et al., 1987a, 1987b; Doty, 1986; Doty et al., 1985); and this help may be at least as efficacious as the help provided by institutions or even paid home care providers.

In 1982, formally provided services in the home from home health or homemaker agencies constituted less than 15 percent of all "helper days of care" (Doty et al., 1985). Overall, families tend to use a lower volume of formal services than professional assessors judge they need (Stoller and Pugliesi, 1988; Noelker and Townsend, 1987). All of the available evidence strongly suggests that, except for some emotional support and chore and errand services provided by friends and neighbors, formal in-home service use tends to supplement informal care and does not replace it (e.g., Christianson, 1988; Moscovice et al., 1988; Noelker and Townsend, 1987). Use of formal services, in fact, can be a good predictor (though not necessarily a cause), of both institutionalization and death (Newman and Struyk, 1990; Hanley et al., 1990), perhaps because these services often are used in conjunction with informal care only after the care recipient has become very ill or incapacitated. This phenomenon means that in any assessment of impact of formal service provision on these outcomes, health status needs to be carefully controlled for.

Informal caregivers, usually family members, may experience worsening mental health and decreased social involvement (George, 1987). There is some indication that they also may experience financial difficulties and physical illness as a result of the burden of providing care. The utilization of part-time paid help amounts to almost half of all community services utilized by caregivers (George, 1987). Thus, there is a corollary (often implicit) argument among those who advocate expansion of formal home-based care as a means of reducing institutionalization and of improving the quality of life of the impaired elderly. It is that paid help relieves or lessens the caregiving burden for unpaid caregivers, so that they are able to provide better care for a longer period of time (Noelker and Toensend, 1987). Although it is hypothesized in this study that unpaid help is better than paid help alone in reducing institutionalization and death (because it is better suited to the provision of continuous or "demand" assistance), some combination of paid and unpaid help may be more effective than either alone or than even some other tandem configurations of caregiving in delaying institutionalization or death.

The potential direct effect of formal home care on mortality is undoubtedly less obvious than that on nursing home admission. However, formal home care may affect mortality in one or more of several ways. When professional caregivers are present, conditions needing medical attention may be recognized more quickly. This attention may be especially important for the elderly lacking informal caregivers. In the joint caregiving situation, informal caregivers may find more time to provide additional care or emotional support to the recipient, thereby potentially enhancing the recipient's well-being and "will to live". Litwak suggests that joint provision, when complementary, (i.e., with the formal sources providing the skilled or routine care and the family the emotional and nonuniform care) would comprise the optimal arrangement. Then too, formal caregivers, especially when they are skilled professionals, may teach the family better techniques of providing quasi-skilled care (e.g., cleansing catheter, use of oxygen for those with COPD), thereby improving the recipient's physical condition and, perhaps, preventing a traumatic hospital admission. They also may convince the family which has been providing excessive care to let the patient do more for himself or herself, thereby reducing the patient's dependency and enhancing self-efficacy and "will to live" (Ulbrich and Warheit, 1989).

On the other hand, the joint caregiving situation, with each party vying to be useful or to control the situation, could end up administering excessive care and induce more rapid functional and physiological decline of the impaired elder. Such induced dependency or sense of loss of control or autonomy could contribute to loss of the "will to live", as well; or formal service provision may somehow contribute to the reduction of interaction with friends and the emotional support and well-being that these friendships provide. One or more of these processes may help explain recent findings in a number of studies that use of formal home care services is a good predictor of institutionalization (Hanley et al., 1990; Newman et al., 1990). The more obvious explanation that persons receiving formal services are sicker is possible, of course, although these analyses just cited included specific controls for health and functional status.

According to Litwak and other group theorists, primary social relationships are characterized by face-to-face contact, emphasize small groups with diffuse ties, and are based on affection and long-term commitment. Such contacts typically involve relatives and friends. They also may include, to a lesser degree, neighbors, workmates or schoolmates. These relationships may be contrasted with formal relationships, especially insofar as the latter are specialized, economically motivated, and lack long-term commitment.

Litwak (1985) argues that due, in part, to their flexibility, primary group networks overall are better suited structurally than are formal organizations for providing personal services, such as those required by persons with ADLs or IADL deficits. Litwak's theory also posits that these nonuniform tasks are primary group-specific, such that some tasks appropriate for spouses or children are not appropriate for friends or neighbors or even for other more distant relatives. Litwak also argues that tasks which are uniform and require expertise are best provided by formal organizations. This group structure theory turns on the notion of optimizing the fit between the provider's capabilities (determined by structure) and the recipient's needs (the tasks required). A better fit should mean a greater provision of services over a longer period. In the end, better fit of services should be reflected in improved long-term outcomes such as avoidance of institutionalization and greater longevity for the care recipient.

Thus, once it is established that some type of help with significant functional debility is better than none, this theory would seem to argue: 1) that unpaid (primary group) help is better than paid (formal group) help; 2) that unpaid help from close relatives, because of the presence of more intense feelings of affection and commitment, is better than unpaid help supplied by more distant relatives; and 3) that help from both formal and informal sources is better than help from either alone because the joint caregiving arrangement provides a balance in functions. The informal meets the idiosyncratic, unpredictable and simple care needs while the formal provides the skilled, uniform, and predictable services the client requires.

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