Academic journal article Health and Social Work

The Influence of Community-Based Services on the Burden of Spouses Caring for Their Partners with Dementia

Academic journal article Health and Social Work

The Influence of Community-Based Services on the Burden of Spouses Caring for Their Partners with Dementia

Article excerpt

Caring for a spouse with dementia in the community is fraught with emotion. First and foremost, spousal caregivers are grieving the loss of their partners, as a result of a long and devastating illness. Although the person with dementia is physically alive, his or her psychological presence in the relationship dissipates as the disease progresses (Boss, 1999). In addition to facing the loss of their life-long partners, spousal caregivers of people with dementia are more likely to struggle with their own health problems, spend more hours per week caregiving, and care for relatives with more severe behavioral problems than do other familial caregivers (Schofield, Murphy, Herrman, Bloch, & Singh, 1998; Seltzer & Wailing Li, 2000). Perhaps as a result of these contextual factors, spouses experience more negative effects from caregiving (Seltzer & Wailing Li, 2000) and benefit from different forms of social support than do adult children (Cortell, 1996; Wailing Li, Seltzer, & Greenberg, 1997).

With social and political pressures to "age in place" spousal caregivers, who comprise 38 percent of the nonpaid caregiving population in North America, are facing increased pressure to provide care to their partners at home for longer periods of time (Canadian Study of Health and Aging Working Group, 1994; Stone, Cafferata, & Sangl, 1987). It is important to note that these expectations come at a time when most Western industrialized governments, fearing a fiscal crisis due to the aging of the population, have been limiting rather than expanding the parameters of government-sponsored community support. As a consequence, spouses of individuals with dementia must offer physical care, negotiate challenging behaviors, provide continuous emotional support, and grieve while managing a complex and resource-limited system of health and support services (Furlini, 2001; Hills & MacRae, 1998).

Despite the vast literature on caregiver stress, few studies have explored how formal services such as professional support, homemaking services, and adult day programs can affect the stress process. Contrary to the prevailing belief of those offering services, the limited data available suggest that formal services exert little impact on the stress process for family caregivers (Aneshensel, Pearlin, Mullan, Zarit, & Whitlach, 1995; O'Rourke, & Tuokko, 2000) and may produce rather than reduce stress for caregivers (Ducharme et al., 2007; Miller et al., 2001). However, measurement and conceptual limitations restrict the interpretation of these findings. Most of these studies have tended to group together various types of family caregivers as if their experiences can be equated. Given that spouses have been found to differ from other familial caregivers in their use of and experiences with community services, that spouses are at particular risk of distress, and that most spouses care for their partners at home for the duration of their caregiving careers, the lack of focus on spousal caregivers, formal community services, and the stress process is striking (Perry & O'Connor, 2002; Sorensen, Pinquart, & Duberstein, 2002).

Previous research has also neglected to explore how different types of community services affect caregivers. Instead, research in this area tends to represent formal services by aggregating the total number of services or total amount of services used by caregivers and explore the associations between these sums and caregiver mental health. This "total score" approach may mask the unique effect of particular services on caregiver mental health. Given that emotional support has been found to be particularly beneficial for spouses, for example, one may expect that formal services offering emotional support (such as one-on-one professional support) would exert a unique effect on spousal caregivers (Wailing Li et al., 1997). Furthermore, because spouses have articulated a preference for in-home tangible support (homemaking services) over day program services, this type of service may provide specific relief for spousal caregivers (Cortell, 1996). …

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