Contributions of Persons Living With Dementia to Scientific Research Meetings

Results From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers

Published in: The American Journal of Geriatric Psychiatry, Volume 28, Issue 4, pages 421–430 (April 2020). doi: 10.1016/j.jagp.2019.10.014

Posted on RAND.org on April 01, 2020

by Lori Frank, Emily Shubeck, Melanie Schicker, Teresa Webb, Katie Maslow, Laura Gitlin, Cynthia Huling Hummel, Edward Harris Kaplan, Brian LeBlanc, Myriam Marquez, Brenda P. Nicholson, Greg O'Brien, Louise Phillips, Brian Van Buren, Gary Epstein-Lubow

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Objective

Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group.

Methods

The PLWD Stakeholder Group was formed by Summit co-chairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations. Members were recruited through clinician/researchers with personal knowledge of potential members. Following the Summit, Group members convened to review Group contributions to the Summit agenda, list of speakers, and Summit research recommendations.

Results

The PLWD Group influenced the content of the Summit agenda and some Group members were invited to contribute through Summit presentations. The Group influenced Summit outcomes: of the 58 research recommendations that emerged, 30 express ideas contributed by the PLWD.

Conclusions

The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.

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