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. 2025 May;73(5):1344-1352.
doi: 10.1111/jgs.19269. Epub 2024 Nov 22.

Moving beyond tokenism: Sustaining engagement of persons living with dementia in identifying emergency research priorities

Jacqueline Sandoval  1 , Andrea Gilmore-Bykovskyi  2 , Christopher R Carpenter  3 , Manish N Shah  2 , Jeffrey Dussetschleger  1 , Scott Dresden  4 , Michael Ellenbogen  5 , Heidi Gil  6 , Naveena Jaspal  7 , Deborah Jobe  8 , Allan Vann  9 , Teresa Webb  10 , Ula Hwang  11   12
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Moving beyond tokenism: Sustaining engagement of persons living with dementia in identifying emergency research priorities

Jacqueline Sandoval et al. J Am Geriatr Soc. 2025 May.

Abstract

Introduction: The Geriatric Emergency Care Applied Research Network 2.0-Advancing Dementia Care (GEAR 2.0-ADC) aims to advance research efforts to improve the emergency care of persons living with dementia (PLWDs).

Objective: To support this objective, GEAR 2.0-ADC convened a virtual consensus conference to prioritize emergency care research opportunities for PLWDs inclusive of perspectives of PLWDs to ensure identification of research gaps in response to their experiences and priorities. Inclusion of PLWDs as research partners is increasingly recognized as a best practice, however, approaches to facilitating consensus participation are lacking.

Methods: Best practices for supporting the engagement of PLWDs in a consensus conference, applied across its three phases (pre-conference, during the conference, and post-conference), include: establishing a learning environment focused on research priorities before the event, presenting information in ways that align with participants' learning preferences while accommodating cognitive impairments, and providing multiple opportunities and methods for gathering post-conference feedback from PLWDs.

Results: These strategies were identified by PLWDs and care partners (CPs) through semi-structured interviews, who were involved in the convening process, aimed at exploring ways to enhance facilitation techniques for participants.

Conclusion: Additionally, these summarized insights aim to encourage the use of community-engaged approaches in discussions and consensus-building around research priorities in emergency care, particularly for PLWDs and their CPs.

Keywords: care partners; community‐engaged participatory research (CBPR); consensus conference; dementia; emergency medicine; lived experiences; research priorities.

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Conflict of interest statement

CONFLICT OF INTEREST STATEMENT

Dr. Carpenter is Associate Editor of the Journal of the American Geriatrics Society and the Deputy Editor-in-Chief Academic Emergency Medicine. Dr. Carpenter serves on the American College of Emergency Physicians Clinical Policy Committee and the American Board of Emergency Medicine as an MyEMCert Editor. All other authors have no relevant conflicts of interest to report.

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