A Fragile Sort of Balance: Careguardianship as a Phase of Caregiving for People with Dementia

Abstract

A little understood period in family caregiving is the time during which a relative with dementia is in long-term residential care. Family members are often caught in the ambiguous situation of being encouraged to 'let go' their caregiving, while remaining firmly committed to their caring relationship. My thesis introduces the term 'careguardianship' to describe the distinctive phase of family caregiving which commences once a relative enters residential care. I argue that this time is conceptually different from community caregiving as the power dynamics between informal and formal caregivers are critically altered. Family members assume a new caring role within a changed environment, one in which they are largely marginal. I draw on anthropological theory to analyse careguardianship as a time of liminality. It is a transitional phase of being betwixt-and-between. As careguardians, primary family caregivers continue providing protective assistance to their relative while paradoxically they also prepare to relinquish caregiving. The emotional and moral bonds of attachment which have built up over many years hold careguardians fast in their caring. At the same time, the vicissitudes of dementia and the way caregiving is represented in Western society position them on the fringes of care. Foucault's theoretical construct of discourse gives a means of understanding the power relations which move careguardians toward disengagement. Using a feminist research approach, I interviewed twenty-five careguardians individually over intervals for more than a year. These included twelve spouses (seven wives and five husbands) and twelve adult children (ten daughters and two sons). In addition, I facilitated three focus groups of careguardians in another New Zealand city. Interviews were audiotaped and analysed using Ethnograph software. My interest has been in determining the everyday lived experiences of careguardians, and their psychological and social adjustment once their relative leaves home. My findings indicate significant gender and kin relationship differences in nearly all aspects of adjustment. Careguardians generally are uncertain of their continuing role and are often unaware of their importance in supporting the person with dementia. They experience difficulties in visiting their relative in a residential setting, and their grief is largely unrecognised by outsiders. Little skilled guidance is available to help careguardians through this major life transition. In my thesis, I contend that careguardians are an undervalued asset. To redress this imbalance, I offer practical strategies for policymakers, health practitioners and residential care staff. The rhetoric of government is to promote a continuum of care for older dependent people. This cannot be achieved for people with dementia until the discourse on disengagement is reformulated and the contribution of family members is integrated into all phases of caregiving.