52 Involvement of People with Dementia and Caregivers in Irish Dementia Research: Experiences, Challenges and Opportunities

Abstract

Abstract Background People with dementia and caregivers of people with dementia have the right to inclusion and involvement in research that pertains to them. They can bring unique insights that add significant value to research. Person/Patient Public Involvement (PPI) occurs when the public/patients work in partnership with researchers in setting priorities, planning and managing research studies, as well as in disseminating findings and putting results into practice. In line with Alzheimer Europe’s position, a dementia charity is working hard to support and build capacity for PPI in Irish dementia research. Methods The Dementia Research Advisory Team was established in April 2019 and is supported by the charity. It is a group of Experts by Experience (5 caregivers and 5 people living with dementia) who influence, advise and work with researchers across Ireland in a PPI capacity. Team members collectively developed terms of reference detailing their expectations of researchers, the charity, and their role in all PPI activities. Team members will focus on becoming active stakeholders in Irish dementia research, and the charity will support them to build their capacity to be involved through capacity-building workshops and continuous evaluation. Results This joint presentation will discuss the development, capacity building, and experiences of the Dementia Research Advisory Team. A person with dementia, will discuss the progress of the team and report on members’ experiences of being involved in Irish dementia research. They will also discuss the impact of involvement on team members, and on the research they have been involved in. Practical ‘lessons learned’ on what did and did not work well will be presented, in addition to how the Dementia Research Advisory Team has navigated challenges and opportunities for involvement of people living with dementia and caregivers in research. Conclusion Members of the Dementia Research Advisory Team represent key stakeholders in Irish dementia research.