Reflecting upon Session 8 of the 2023 dementia care summit: Diversity beyond outreach, recruitment, and retention

Abstract

Informal dementia caregivers play essential roles in their families, communities, and our society. Furthermore, their research participation is paramount to fully understanding dementia experiences and aging trajectories. In this Perspective, I reflect upon Session 8 of the National Institute on Aging (NIA) National Research Summit on Care, Services, and Supports for Persons Living with Dementia and Their Care Partners/Caregivers. I assert that the field prioritizes outreach, recruitment, and retention regarding the inclusion of informal dementia caregivers from diverse backgrounds in research. Fully characterizing heterogeneous caregiver experiences and examining the impacts of dementia caregiving requires centering informal caregivers in the complete context of study design, beginning with research questions. I offer three critical areas of research questions for consideration within aging and dementia research. These questions may serve as a foundation for future Summits and, ultimately, as a pathway to facilitate optimal health and aging for all informal dementia caregivers.

Highlights

• Research engagement and recruitment are critical components of dementia studies.
• These components must align with study design, especially research questions.
• Three critical areas of research questions will advance the field of dementia.
• Examining these research questions will provide evidence for policy and strategy.
• Questions focus on post-death caregiving, aging trajectories, and clinical trials.