Concepts of self in dementia research: towards theoretical integration

Abstract

Research on understanding the self of persons with dementia (PWD) has increased significantly in the past decades across various fields of research. This has led to a profusion of novel conceptualizations of self. Meanwhile, the rise in dementia diagnoses worldwide presents us with complex global societal and individual challenges. Since the understanding of the self of PWD is vital for improving their well-being, autonomy and care needs, this article argues that there is a need to integrate and systematize these conceptualizations of self. The current state of conceptual unclarity undermines the wellbeing of PWD, since it impedes the exchange and development of (empirical) research results and ideas. With the aim of uniting and systematizing the conceptualizations of self in research on PWD, in order to develop a pragmatic, clustered approach based on the research of the field itself which can be applied in an empirical setting with PWD, this article departs from the literature reviews from the various fields involved in the research on the self of PWD. By focusing on the theoretical overlap between the conceptualizations of self employed in these reviews, four overarching clusters of self-aspects can be formulated: minimal, embodied-embedded, reflective and socially-embedded self-aspects. These clusters jointly provide the ground for self-continuity in PWD. This clustered approach provides a framework which unites the current field of research, within which new findings can be integrated and which can be applied in an empirical setting.