Planning and enabling meaningful patient and public involvement in dementia research

To summarize the latest evidence on patient and public involvement (PPI) in dementia research. To identify methodologies used to deliver and evaluate co-production, potential barriers to involvement, and effective strategies to enable meaningful involvement of PPI representatives in dementia research.

PPI expertise in dementia research has been utilized to increase the acceptability of new interventions to end users and to interpret research findings from a PPI perspective. Practical adaptations to materials and meetings, and building relationships and trust were important facilitators for engagement. PPI has included caregivers, people living with dementia (PLWD) or both, with few studies involving the public or professionals. Engaging PLWD and hard-to-reach groups in PPI is challenging, with most current PPI representatives recruited from dementia organisations. Few studies have assessed the impact of PPI on study outcomes.

In this relatively new field, methods that allow meaningful engagement are being iteratively developed. Greater community and patient engagement will be a prerequisite for increasing diversity of PPI, to ensure voices of a broader range of stakeholders are heard. Documenting and publicizing the impact of this work and engaging existing PPI representatives to support PPI recruitment could help with this.