The Unencumbered Child: Family Reputations and Responsibilities in the Care of Relatives with Alzheimer's Disease

Abstract

Using a grounded theory methodology in exploratory interviews with noncaregiving and caregiving adult children, differences were found in their experience of burden, their focus, their suffering, and their sense of responsibility. Childhood reputations appeared to follow siblings into adulthood, and they describe finding their adult positions in the family clearly circumscribed and entrenched because of family legacy. Children who were in some way different and excused from family responsibilities in childhood because they were, for example, "spoiled," a "problem child," the "intellectual," or "flaky," appeared to be unencumbered as adults when faced with caregiving responsibilities for a relative with Alzheimer's disease. Although these uninvolved and unencumbered children seemed to take less caregiving responsibility, they describe their loss and suffering in relation to a loss of identity and selfhood, whereas other children describe their burden and the overwhelming pulls and demands made on them. These preliminary findings suggest the need for systematic scientific inquiry about families, including multiple relatives, family history, impact of family-of-origin legacy, family reputations, and family negotiation patterns.