Lessons learnt from delivering the public and patient involvement forums within a younger onset dementia project

Area of Science:

• Gerontology
• Public Health
• Health Services Research

Background:

• Meaningful inclusion of people living with dementia is vital for effective research.
• Younger onset dementia requires specific approaches to diagnosis and support.
• Public and Patient Involvement (PPI) is key to patient-centered research.

Purpose of the Study:

• To describe the methodology of integrating the perspectives of people with younger onset dementia into research.
• To share lessons learned from establishing and running PPI forums for dementia research.
• To demonstrate a model for active and meaningful patient involvement in dementia research.

Main Methods:

• Established two PPI forums (London and Bradford) for people with younger onset dementia.
• Integrated PPI members into all project phases: design, implementation, and dissemination.
• Documented the formation, meeting formats, and collaborative processes of the PPI groups.

Main Results:

• People with younger onset dementia provided valuable expertise throughout the Angela Project.
• PPI forums facilitated active participation and informed decision-making in research.
• The project successfully incorporated lived experiences into improving dementia care.

Conclusions:

• Active and meaningful involvement of people with dementia significantly enhances research quality and relevance.
• The Angela Project model offers practical guidance for researchers seeking to implement effective PPI.
• Prioritizing the voices of individuals with dementia leads to more impactful health and social care research.