A multi-person reflection on using public and patient involvement and engagement to develop dementia research

Involving people living with dementia in the development of research through PPIE is the gold standard for ethical research. Established PPIE groups have been set up throughout the UK to provide people with dementia opportunities to have their voice heard. However, accessing these groups as a doctoral researcher can be difficult, and little guidance is given on how to make the process successful. Additionally, many people living with dementia are unaware such groups exist, and thus don't benefit from getting involved. In response, this paper summarises the PPIE process taken to develop a piece of doctoral research. Uniquely, this project involved collaboration with an individual living with dementia who was previously unfamiliar with research practices, and their friend. In this paper we present our shared experiences of the PPIE process, the benefits we all received, and the challenges we encountered. We combined a practical PPIE framework with an appreciative research approach to reflect on concepts such as ethical dilemmas and how these impact on participation. We conclude by offering practical tips on how to create a meaningful PPIE process to encourage other doctoral researchers to collaborate with people living with dementia in their research.