Bedlam or bliss? Recognising the emotional self-experience of people with moderate to advanced dementia in residential and nursing care

Abstract

Purpose – The purpose of this paper is to examine the self-experience of people with moderate to advanced dementia. While people with dementia are widely assumed to lose their sense of self, emotions are preserved long into dementia and some can still discuss their lives, enabling exploration of respondents’ own self-conceptualisation of experience. Design/methodology/approach – Ten people, purposively sampled, living in long-term residential or nursing care. A mixed methods design with Interpretative Phenomenological Analysis approach used semi-structured empathetic interviews to explore their experience and continuing goals, using supplementary information from family and others to contextualise core data. Data analysis identified emerging themes and superordinate concepts. Findings – Sustained well-being and resistant ill-being emerged as major themes. Findings demonstrated continuity in sense of self, moral awareness and diversity of emotional reactions to living with dementia, associated with their emotional capital. Research limitations/implications – The sample was small and limited to well- and moderately funded care homes. How to provide such support in less-well-funded homes needs further research as do reasons for resistant ill-being in advanced dementia. Practical implications – Findings suggest care provision for people with advanced dementia which acknowledges individual feelings may support their sustained well-being. Psychological assessments should take closer account of multiple factors in individuals’ situations, including their emotional capital. Social implications – Findings suggest everyday care of people with advanced dementia, may sustain their sense of self, well-being and emotional capital. Originality/value – By empathically facilitating in-depth expression of individuals’ feelings and views, this research illuminates the personal self-experience of advanced dementia, hitherto little explored.