Role shifts and transformations: theater-based participatory action research with women caring for spouses with dementia.

Abstract

Spouses caring for their partners with dementia face multifaceted challenges influenced by their marital life course. The current study employed theater-based participatory action research to explore and understand the lived experiences of women caring for spouses with dementia. Over 10 sessions, seven caregiver-women engaged in theatrical methods to explore the personal, familial, and social transformations they were facing. Individual guided recall interviews were conducted while reviewing segments from the videotaped sessions. The data which included video recordings of the sessions and post-interviews were analyzed using an inductive reflexive thematic approach integrated with the Six-Keys model for analyzing the dramatic scenes. Three main themes emerged from the analysis: (a) redefining roles within the couple's relationship, (b) redefining roles within the close environment, and (c) redefining roles in relation to state health care institutions and authority figures. The discussion centers on the three lived continua that captured the findings: (a) integration versus splitting; (b) loneliness versus shared experiences, and (c) suppression versus activism. It is shown how the theatrical methods enabled the caregiver-women to explore their life-course experiences and their changing roles and rehearse new strategies for coping and communicating.