Participation of persons with dementia and their caregivers in research

July 10, 2021

This article summarizes each of the topics presented at the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers. This review article addresses research participation by persons living with dementia (PLWD) and their care partners in two different ways: as research participants with input on outcomes studied and as engaged research partners followed by reflection from the session panelists. Lee Jennings examined collection of outcomes directly from PLWD and the potential for individualized outcomes to enhance measurement in intervention trials. Jason Karlawish, MD, Leader of the IMPACT Ethics & Regulation Core, co-authored the review.