Caregiving as a Process of Changing Identity: Implications for Caregiver Support

How to assess caregivers' various and individual sources of distress in order to fully support them in their journey. Informal caregivers serve as the primary instrument of long-term care for people with dementia and other chronic conditions in American society. Not surprisingly, then, providing support to caregivers has become an important practice and policy issue. The great variability among caregivers in the experience of caregiving suggests that caregiving is an idiosyncratic process, a conclusion that has several important implications. First, any caregiving situation is, always and necessarily, a unique situation. Thus, there is no such thing as an "average" caregiver. Second, there are great differences among caregivers in the pressure they feel to take on the caregiving role in the first place, in their expectations concerning the duties they are obligated to perform, and in the circumstances that allow them ultimately to relinquish the role. These differences simply reflect the unique histories and circumstances that accrue to individuals situated in a specific family, in a specific culture, at a particular historical time. Thus, knowing how one caregiver experiences the role will tell us very little about how another caregiver, even one performing objectively similar care tasks, experiences the role. Third, and most important, the caregiving role emerges from an existing role relationship. The caregiving role should not be seen as a new role that is added to one's repertoire of social roles but, rather, is most usefully viewed as the transformation of an existing role relationship. Indeed, for spouses, children, and even friends, this role relationship will almost certainly be one of the most meaningful social relationships in their lives. Overall, the extensive body of work on caregiver outcomes shows wide variations, not only in the tasks that caregivers undertake, but also in the costs they incur and the benefits they experience as a consequence of their caregiving role (Dilworth-Anderson, Williams, and Gibson, 2002; Haley et al, 1995) (see Fox and Max, this issue). Effective Interventions to Support Caregivers The effort to support informal caregivers has not been a straightforward matter, primarily because most efforts to intervene have not addressed the variability in the caregiving experience. The types of services that have been most frequently examined include educational programs, counseling, support groups, and respite services delivered in various formats (Schulz et al., 2002; Sorensen, Pinquart, Duberstein, 2002). The most promising findings regarding the positive impact of support services have emerged from intervention studies that have included a relatively comprehensive set of support services such as the randomized, controlled trial of multicomponent interventions (e.g., Bourgeois, Schulz, and Burgio, 1996; Burgio et al, 2003). While much has been accomplished to support caregivers, it should also be noted that many caregivers decline to use services that, ostensibly, would be helpful to them (Kosloski, Montgomery and Youngbauer, 1999). Indeed, a common complaint among service providers is that informal caregivers use services in a manner that can only be described as "too little, too late. " Moreover, among those who begin to use a service such as respite, fully one-third discontinue it within the first ninety days. For these individuals, it is hard to escape the inference that the service was simply not what the caregivers needed at that time (Montgomery et al., 2002). A major problem is that most programs designed to intervene and support caregivers have overlooked the importance of the longitudinal and dynamic nature of caregiving. Effective interventions must recognize (a) the diversity among caregivers, (b) the significant changes in the caregiving context that occur over the caregiving career, and (c) the corresponding changes that define the need for assistance. …