Narrative Inquiry in Bioethics

Abstract:

These stories convey the diversity of AD caregivers but also the similarities of the difficulties they experience over years of adjusting to the increasing challenges of the tasks. The authors vividly express both the toll caregiving takes; many also derive positive feelings from the experience. Among the bioethical issues raised in the stories are the failure of professionals to utilize caregivers' intimate knowledge of the person, the tension between lying to and comforting the person, choices at the end of life, and the still-emerging impact of genetic and biomarker information about the caregiver's own susceptibility to the disease. It is common for caregivers and professionals to characterize the relationship of caregiver and parent as "role reversal." This commentary calls for a new look at that framework, which fails to recognize the many differences between caregiving for a child and for a person with AD.