Collaborative research in dementia care and support

Over the past two decades, the involvement of people with dementia in applied health and care research has increasingly shifted towards more equitable, inclusive, and collaborative approaches. This work reflects on an innovative collaborative research initiative conducted in dementia care in a local health and care system in England (2015-2021). Blending Participatory Action Research and co-creation, it involved local stakeholders, including people living with dementia, their family carers, and health and care professionals, as active research partners while simultaneously driving improvements in the local dementia care system. The initiative, which was overseen by the English research ethics policy framework, was organised in three phases and employed multiple research methods. In the diagnostic phase the information need was identified as prevalent, pervasive, and often unmet among people with dementia and their families and became the focus of the improvement phase. In the improvement phase local stakeholders designed an intervention to support the information behaviour of people with dementia and their carers. The evaluation phase that followed was conducted as a process evaluation focused on one implementation arm of the designed intervention. Drawing on empirical data collected during the initiative, this work makes three contributions. First, it advances the theoretical understanding of information behaviour (a set of complex activities that are relational, emotionally charged, contextually embedded) and shows its affordance to inform health and care information policy and practice. Second, it critically examines the experience of conducting collaborative research in the complex policy landscape of dementia care, identifying the factors that shaped the initiative’s trajectory. Lastly, it reflects on the tension between the methodological framework of collaborative research and the requirements of the research ethics system that was observed throughout the co-creation initiative, offering recommendations to better align the research ethics system with the principles and practices of collaborative research.