Well-being and expression of self in dementia: interactions in long-term wards and creative sessions.

Abstract

This is a multi-method ethnographic study, grounded in symbolic interactionism and social constructionism, which seeks to explore the social worlds of people with dementia in institutional long-term care. Carried out over six months, it uses non-participant observation, Dementia Care Mapping, video-recording, focused conversations and extensive fieldnotes to document types of interactions that fourteen people with dementia received in everyday ward life and during weekly creative sessions facilitated by occupational therapy (OT) staff. Using Kitwood’s (1997) work on person-centred care and Sabat’s (2001) work on selfhood (Selfs 1-3) it identifies their responses to such interactions in terms of their well or ill-being and expressions of Self.

The study shows that everyday staff interactions with participants, while sometimes positive, were more often limited in their potential for maintaining or increasing well-being. Sometimes staff interactions were abusive; causing participant ill-being. Participants expressed Selfs 1-3 verbally and visually, although some of these expressions were subtle, fleeting and fragile.

During creative sessions, OT staff engaged in sustained positive interactions, raising participant well-being and facilitating Self-expression; a fragile expression of Self could become a robust expression of Self, a past Self could be reclaimed and a desired Self co-constructed.

My findings suggest that, in their interactions during creative sessions, OT staff generally recognised and supported Self of participants, raising well-being. However, ward staff did not fully recognise and therefore could not support Self in their interactions with participants, resulting in participant ill-being. This is a crucial finding, which could partially explain the differences in interaction types I observed, and the corresponding differences in participant well-being and Self-expression.

This thesis argues for integrating the selfhood and person-centred approaches into an innovative staff-training programme, in order to bring about transformational change in practice. This might encourage care staff to reach out, recognise and respond to aspects of Self as they carry out care; promoting more positive ways of interacting with their patients, increasing patient well-being and fostering staff satisfaction.