The dementia research involvement study : exploring and explaining the involvement of people living with dementia and family carers through patient and public involvement activities

Abstract

Background. The last two decades have seen increased recognition of the centrality of patient and public involvement (PPI) in the conduct of relevant and impactful research. In the dementia field, evidence suggests that the lack of PPI opportunities is associated with methodological challenges for people living with dementia (PLWD) and family carers. As part of a broader programme designing a new model of care post-dementia diagnosis, this study aims to identify contexts and mechanisms promoting the involvement of PLWD and family carers in research through PPI activities. The ultimate purpose is to provide guidance on how best to involve PLWD and family carers, ensuring they contribute to shaping future research and care. Methods. Drawing on realist methodological principles, the study consisted of an iterative research process characterised by three phases. Phase I entailed a case study including the collection of documents, observations, and fieldwork notes to formulate programme theories. Phase II focused on consulting relevant stakeholders to question the contextmechanism-outcome configurations underpinning those theories and refine them if appropriate. Phase III included the collection of fifteen interviews to test and further refine the programme theories. Findings. Eleven programme theories resulted from the three-phase realist evaluation. These theories informed the development of a conceptual framework that explains how PPI operates theoretically and details core processes leading to good practice. Conclusions. The involvement of PLWD and family carers in PPI activities is fundamental to advance dementia care research and practice. To that end, findings from this study provide theoretical and practical guidance for the design, implementation, and evaluation of PPI in dementia studies. While future research could build upon these findings through further testing and refinement processes, recommendations included in this thesis have potential application in other research fields where inclusive and sustainable involvement is a goal.