Decision-making in dementia care from the viewpoint of affected relatives: a qualitative study

Abstract

Background: This study investigates how the relatives of dementia patients experience the process of making decisions on behalf of cognitively impaired family members, the extent to which they involve patients in that decision-making process and how they justify their approaches to the role. Methods: We conducted three focus group sessions with in total 20 Germany-based family members recruited using purposive sampling strategies. Each focus group was audiotaped, transcribed and analysed using structured qualitative content analysis. Findings: Relatives described the transition in their decision-making roles when required to supersede patients’ decisions as difficult to reconcile with their self-image and thus unsettling and stressful. The findings reveal that during this adjustment process relatives reinterpret their relationship to patients as similar to that between parents and children. This change tends to be accompanied by (a) the negation of any decision-making ability on the patient’s part, (b) the comprehensive assumption of all decision-making responsibility by relatives, (c) the reduction of patient involvement to little more than pseudo self-determination and (d) the perception of a moral justification for restricting patient self-determination as a necessary condition for the provision of care. Discussion: The shift from the adult to the ‘child’ paradigm appears to reduce dissonance experienced by relatives in connection with the restriction of patient self-determination and to facilitate the stabilization of self-integrity. This psychological mechanism is inimical to a nuanced understanding of patient decision-making ability and the prospect of a shared decision-making process.