The Experiences of Persons Living with Dementia Planning for a Dementia Research Meeting

Lessons Learned 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 434–442 (April 2020). doi: 10.1016/j.jagp.2019.10.015

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

A stakeholder group for persons living with dementia (PLWD) was convened to support the work of a major US dementia research meeting. The objectives of this examination are to present the steps used to implement the Group and guidance for both PLWD and researchers for partnering on research conference planning and participation.

Methods

PLWD met monthly to provide input into the agenda for the 2017 Research Summit on Dementia Care and some Group members also presented at the Summit. Following the Summit, the Group reviewed their contributions and completed an evaluation of the Group process, identifying best practices to support future efforts.

Results

Group members were initially unsure about participating due to concerns about ability to contribute and concerns about disease progression. Members reported that participation was a positive experience, however, identifying Group-led governance and attention to Group work process as important contributors. In addition to giving input to the Summit and having the opportunity to interact with researchers, sharing personal experiences with each other was part of the value of the Group to members. Careful Group selection and attention to governance were among the Best Practices members.

Conclusion

Despite initial uncertainty among members about participating as a Stakeholder Group to inform a national research meeting, members developed a successful process for governance, convening, and providing input to a major national research meeting. Group's self-evaluation yielded specific strategies likely to be useful in formation and implementation of future partnerships between researchers and persons living with dementia.

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