Exploring the experience of Dementia from a participatory perspective. From experience to theory and back again: realist explanatory theory building method
Background: The way dementia is understood shapes public attitudes towards those living with the condition and professional approaches to treatment. This has implications for the experiences of those living with dementia. Theoretical models currently guiding care and informing public perceptions are limited and incomplete, reflecting professional rather than personal experience. They fail to capture the complexity of this experience, potential for adaptation and role of participation relative to health and wellbeing. Research presented in this thesis contributes towards bridging this gap through developing a conceptualisation grounded in the first-hand accounts, reflecting the complexity of living with dementia and exploring factors and processes impacting upon adaptation and participation. Methods: A modified realist explanatory theory building method was used. This included triangulation of subjective perspectives of people living with dementia with complexity- consistent theories, identification of factors contributing to the overall experience, as well as causal mechanisms and processes involved. The first phase used qualitative meta- synthesis of 34 studies on first-hand experience and informed the development of a tentative model of dementia experience. During the next phase, this initial model was examined against concepts and ideas from 11 complexity-consistent theoretical frameworks. In the final phase, a model was scrutinised against narrative data of 12 people living with dementia and 19 family members. Results: The experience of living with dementia is conceptualised as “adaptation through participation”, emerging from ongoing, dynamic and non-linear interactions between multiple contributory factors and causal mechanisms, both personal and environmental. The model identifies and explains causal dynamics and adaptive processes shaping outcomes in dementia. Possible trajectories of these outcomes are explored, with the model indicating that these should be considered in terms of a spectrum rather than distinct stages of dementia progression. “A tree and a forest” metaphor is used to depict the proposed model and further explain findings. Diverse understandings of the model’s key conceptual domains are captured and explored relative to implications for the “adaptation through participation” process in dementia. Finally, findings are discussed in the context of the relevant theory and research evidence. Conclusions: By emphasising and explaining the potential for adaptation and enduring participation in dementia, the conceptualisation proposed in this thesis can contribute towards a shift in current policy and practice from the management of deficits to proactive support for continuity of participation throughout the dementia spectrum. However, before this is realised, additional work aiming at validation of the proposed model, further clarification of conceptual domains and causal relationships between them, and exploration of the role of multiple accounts of dementia experience, representing perspectives of people living with dementia and the important others; is required to establish the practical utility of the proposed model.