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

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.