Illness Representations and Lived Experience in Early-Stage Dementia

Abstract

The self-regulation model of illness behavior provides a framework for understanding how threats to self from chronic illness can be managed and proposes a significant role for illness representations. This framework can assist in illuminating the experience of developing dementia but has not previously been considered in this context. The authors conducted semistructured interviews with 9 people who had a diagnosis of early-stage dementia to explore illness representations and how these related to daily lived experience, using interpretative phenomenological analysis (IPA). Two over arching themes emerged: It will get worse, reflecting an understanding of dementia; and I want to be me, reflecting a desire to maintain sense of identity. Participants faced a number of personal and interpersonal dilemmas. The authors present a preliminary model of the way in which illness representations contribute to the lived experience of early-stage dementia.