Capturing the experiences of younger people with dementia and those close to them: co-constructing the ‘Sharing Model’

This thesis presents a constructivist grounded theory study of the experiences of younger people with dementia (YPWD) and those close to them. Semi-structured interviews were conducted over a two and a half year period. Younger people with dementia of age < 65 (n = 16), partners of YPWD (n = 11), adult children of YPWD (n = 3), a professional carer (n = 1) and a specialist nurse (n = 1), were recruited through their contact with a specialist NHS service in the north of England. Draft study proposals were initially reviewed by a group of YPWD and their partners and also a health and social care YPWD team. The literature relating to the experience of YPWD that existed at the outset of the study was considered and informed the initial foreshadowed questions that provided direction for the study. Following a purposive sampling strategy, theoretical sampling was later employed throughout the process of data collection. Transcribed interview data were qualitatively analysed for codes and themes to produce a grounded theory. The methodological underpinnings of this constructivist study, including the processes employed for ‘co-construction’ of the findings are presented. A four stage temporal model was identified: 1) Noticing something unusual, 2) What’s happening? Seeking a diagnosis, 3) Receiving & sharing a diagnosis, & 4) Where do we go from here? Getting on with it. Sharing is presented as a core social process that was present across all four of these temporal stages and was central to how participants engaged in either; Maintaining, Modifying or Abandoning aspects of their lives across the temporal journey of being (or being close to) a YPWD. The usefulness and applicability of the Sharing theory and of how this may contribute to the broader literature related to the experience of dementia is discussed. The study findings and the Sharing theory are then considered in light of recent UK literature on the prevalence and experience of dementia at a younger age and current related health and social care policy in England