Experiences of shame for people with dementia: An Interpretative Phenomenological Analysis

Abstract

Studies highlight that shame can be problematic for people with early-stage dementia. However, no published research has specifically explored experiences of shame in dementia from the perspective of the individual. This study uses Interpretative Phenomenological Analysis to gain an understanding of how shame is experienced and made sense of by six people with early-stage dementia. Individual, semi-structured interviews took place in participants’ homes. An in-depth analysis of the data revealed four superordinate themes implicated in shame experiences: Avoidance explains the participants’ efforts to distance themselves from shaming experiences; participants reported Negative self-perceptions including a weakening self, loss of value and meaninglessness; Relationship matters involved issues around trust, burden and past relationships and Uncertainty and loss of control highlights participants’ anxiety about losing clarity and control. Ideas are contributed for promoting non-shaming experiences for people with dementia, particularly through communication during assessment and diagnosis, and psychological therapies.