Co-research and involvement of people living with dementia in health services research: Lessons and reflections for primary care

Problem

There are increasing calls for dementia related research in primary care. Inclusion of people living with dementia in dementia research continues to be advocated. Yet, seldom has the shift from research on, to research with, people living with dementia transpired. The CO-research INvolvement and Engagement in Dementia or COINED model forms part of the work of the Neighbourhoods and Dementia Study and is a unique and positive feature of the our study. The term ‘co-researcher’ reflects collaborative, co-operative and community-based partnership between groups of people living with dementia, academic researchers and service providers.We capitalised on opportunities to facilitate the unique involvement of people living with dementia within a multi-level, mixed method study conducted in the complex environment of NHS acute hospitals. We will present our insights and reflections learned for health services research as a whole, including aspects critical to co-research in primary care.

Approach

We utilised a mixed methods research design, that included a cohort study, Hospital Episode Statistics and health economics analysis, as well as primary data collection. These data included survey data at organisational and staff levels, and qualitative data gathered through a multi-hospital case study approach. A systematic review of literature identified contextual factors, mechanisms, interactions, facilitators and barriers to dementia training in the hospital setting. Across each of the study phases, we have facilitated the involvement of people living with dementia as co-researchers, guided by the COINED model of co-research. In this presentation, we focus on our co-research approach and facilitation.

Findings

Our co-researchers were involved in study design, survey development (organisational and staff level), participation in case study site visits, and qualitative data analysis. We worked with local memory cafes in the community to hold group discussions and one to one consultations. In this presentation, we outline these areas of involvement and focus on the inclusion and participation of people living with dementia in our study in the following ways:• Consultation and feedback on the choice of participants, question domains for study surveys, and the focus of qualitative interview tools;• Conducting hospital case study visits with people living with dementia from the community in each site, for ‘real-time collaborative co-research analysis’;• Co-research data analysis workshop, and development of an initial logic model through the systematic review.

Consequences

These areas of involvement enhanced the inclusion of the perspectives of people living with dementia and ensured a fuller exploration and understanding of data, and interpretation of these data within our theoretical and thematic analysis frameworks. Importantly these opportunities of involvement facilitated the unique representation of people living with dementia in a multi-level, mixed method study conducted in the complex environment of NHS Trusts, and relate to the different levels of health and social care.