Making sense of younger onset dementia : re-authoring life stories disrupted by loss

Abstract

Despite the recent dramatic growth in research into the subjective experiences of people with dementia, there has been less attention given to the ways that people with dementia find meaning in their illness experiences and the impact of that on their coping. In particular, there is still much to be said and understood about the meaning making of people with younger onset dementia. The purpose of this thesis is to explore the unique ways that younger people with dementia find meaning in their illness journey and how that impacts on the way that they understand and cope with dementia. A constructivist narrative inquiry approach has informed the design and implementation of this study. Semi-structured interviews have been used to elicit narratives about the experiences of seven people with younger onset dementia in their daily quest to make sense of, and cope with, their illness. Neimeyer’s model of meaning making (Gillies & Neimeyer, 2006) is used as a heuristic guide in the exploration of participants’ narratives. Within this framework, meaning making comprises three aspects: making sense of losses experienced; identifying and understanding changes to sense of self; and finding benefit in experiences of loss (Gillies & Neimeyer, 2006). Analysis of data comprises three phases: an initial thematic analysis, focusing on key events and experiences, and the use of metaphorical language and other narrative devices; structural analysis employing narrative concepts which reveal more nuanced aspects of participants’ meaning making; concluding with the identification of key meta-themes in participants’ narratives. These meta-themes draw on discourses that are familiar and meaningful for participants and include significant family narratives, narratives embedded in life long stories, stories of competence, and narratives of disconnection, trauma and struggle. A full chapter focuses on key aspects of listening to the meaning making narratives of younger people with dementia. This includes following the movement from conventional narrative structures to more poetic expressions of meaning that occurred over time as an individual’s capacities changed. This discussion points to the potential for listening for deeper meaning, which can reveal rich expressions of the storyteller’s transitioning sense of self and important exceptions to more privileged self-narratives. This thesis not only identifies important aspects of meaning making for participants, but points the way for counsellors and other helping professionals to create opportunities for exploration of meaning making with younger onset clients and their families. In this way, counsellors can provide powerful support as clients seek to understand the impact of their illness and potentially find the energy and motivation to live with a sense of hope and possibilities (Bryden, 2015, p. 229).

Date of Award	2019
Original language	English
Supervisor	Ione Lewis (Supervisor), Frances Mackay (Supervisor), Barbara PAMPHILON (Supervisor) & Steve Shann (Supervisor)