Public and participant involvement as a pathway to inclusive dementia research

Abstract

The field of Alzheimer's disease and related dementias (ADRD) urgently requires inclusive research to ensure the priorities and outcomes of research apply to those most impacted. We postulate public and participant involvement (PPI) as a pathway to achieving the best science, both in research that informs health and social policy as well as in therapeutic studies to treat and prevent ADRD. This position paper aims to provide dementia researchers with evidence to understand how to apply PPI. We begin by highlighting the disparities experienced by people with dementia, including ageism, stigma of cognitive impairment, and health disparities for minoritized communities. We then provide examples of PPI in ADRD across the research lifecycle, from defining research topics of priority to those impacted by ADRD, through the design, analysis, dissemination, and translation to policy and practice. We also provide recommendations to create and maintain collaboration between researchers and communities through PPI. HIGHLIGHTS: A central premise of public and participant involvement (PPI) is collaborative relationships between researchers and community members. To build equitable partnerships, researchers must acknowledge and understand the context of research. This includes ageism, the stigma of dementia, and ongoing discrimination for many minoritized communities. Meaningful partnerships include choice, respect, shared decision making, access, inclusion, and representation. Notably, we recommend that researchers begin partnerships early in the research process and share the impact of PPI on research.