Impacts of Care III

An important point – with clear implications for intervention – is the degree to which caregivers anticipate and plan for the future. Many studies have found that people do not plan for how and when they will assume a caregiving role (Horowitz, 1985). Instead, it happens to them. Montgomery and Koslowski have conceptualized stages or markers of the caregiving career. For many, this emergent stage is a gradual process in which an adult child provides some assistance (e.g., shopping or home maintenance) before it is essential. As the parent develops functional disabilities, more tasks are taken on. For others, there is an acute or defining event (e.g., a CVA or hip fracture) that thrusts them suddenly and unexpectedly into the caregiving role. This latter situation is more stressful. For some time I have thought that caregiving in a stable situation, while demanding of time and energy, is not necessarily stressful because the caregiver establishes a routine and adapts to it. However, an acute event, whether it is the initial event or an event superimposed on a chronic situation, upsets the routine, requires additional time and energy resources, and therefore is more stressful. An early study by Zarit et al. (1986) showed that caregiver burden diminished over time as caregivers likely adapted to the demands of caring. A more recent study by Given et al. (1999) investigated the effect of new demands for assistance on caregiver well-being. They found that caregivers who experienced high numbers of new demands for care following a hospitalization were more likely than those who did not to experience increased levels of depression. These findings are particularly relevant in the current health care environment in which patients are discharged earlier, once intensive therapy is completed, which increases the complexity of care needed in the home. Limits on Medicare home health visits resulting from the 1997 Balanced Budget Act place more demands on family caregivers. While some policy makers remain concerned with the availability and willingness of families to provide care, concern should be directed toward their ability and skills to do so.

An important point here again is that increased involvement of family caregivers has long been associated with lower use of formal care services. Data from the NAC/AARP survey (National Alliance for Caregiving and Alzheimer’s Association, 1999) are consistent with that of other studies. On average, two services of a possible 10 services were used by caregivers in that study. Service use increases with level of care needed and is higher for dementia care than non-dementia care. However, while it is plausible that use of formal services would alleviate the caregiver’s sense of role overload, the MEHP data (Yates et al., 1999) indicate that this is not the case. As shown in Figure 2, service use appeared to have little or no effect on caregiver well-being.

Studies of caregiver interventions, particularly respite care, have shown inconsistent results (Knight et al., 1993; Zarit et al., 1998). Respite care can be provided through in-home services, adult day care, volunteer programs, and brief residential care often in nursing homes. Adult day care has been the form of respite most frequently studied. Caregiver outcomes investigated in these studies include stress, anxiety, somatic complaints, depression, and psychological well-being. Results of early studies showed limited therapeutic benefit (e.g., Strain et al., 1988; Guttman, 1991; Gottlieb & Johnson, 1995; Henry & Capitman, 1995) and results across these studies were inconsistent. However, as described by Zarit et al. (1998), limitations in study design and measurement might have obscured the value of adult day care as respite. The well-designed study by Zarit and his colleagues (1998) demonstrated both short-term (3 months) and long-term (12 months) benefits of adult day care use in decreasing caregiver stress and enhancing psychological well-being. This study also focused on the caregiver’s appraisal of the situation (using the same measure of role overload discussed previously), underscoring the subjective experience of caregiving as an important target of intervention.

Another intervention approach – support and counseling – was studied by Mittelman and colleagues (1996). They provided individual and family counseling followed by support groups for spouse-caregivers of elders with dementia to see if it resulted in delaying nursing home admission. The intervention was successful in prolonging the time that these caregivers provided care at home, particularly during the early to middle stages of dementia.

These recent data support an upstream approach (McKinlay, 1975, 1996), in which one attempts to intervene before an issue becomes a problem too difficult to solve, would focus on the contributors to overload and attempt to intervene in a way that prevents stress rather than simply relieving it. If we consider the recent findings regarding a caregiver’s appraisal of their situation, upstream interventions might address issues of evaluating the elder’s needs, coming to terms with the needs of the elder versus the caregiver’s ability and willingness to provide care, and developing strategies to prevent overload, by training caregivers in technical skills or in obtaining emotional support before they actually need it. The challenge here is to identify caregivers and intervene perhaps before they identify themselves as caregivers, or perceive the need for outside intervention.

Finally, we turn to cessation of the caregiving role. Very few studies have investigated why caregivers voluntarily leave the caregiving role (i.e., for reasons other than institutionalization). Using national data from the National Long-Term Care Survey, Kasper et al. (1994) found that ending caregiving occurred for only 5% of cases and was related to higher levels of care, need for constant supervision, caregiving for less than one year, and a sense that good feelings did not outweigh caregiving stress. It was also more common in caregivers who were not closely related to the elder. Analysis of this question in the MEHP data revealed that cessation of caregiving was related to manifestation of problem behaviors, not having a good relationship with the care recipient, lack of confidence in ability to provide more care, and not being a close relative.