Using community engagement studios to involve persons living with dementia and their care partners in research design

Abstract

Background

Persons living with dementia (PLWD) and their care partners face unique challenges in participating in research studies. Community Engagement Studios (CES) provide a framework for researchers to work directly with community members, considered as Community Experts, who experience conditions under study to enhance research design, implementation, and dissemination.

Objective

We describe our experience conducting CES with PLWD and their care partners and lessons learned.

Methods

PLWD and their care partners participated in three CES between July and December 2022; one in New Hampshire in English and two in New York, one of which was in Spanish. We followed the CES Toolkit guidance, which involves 1) inviting experts/stakeholders (PLWD and their care partners) to a consultative meeting, 2) preparing a presentation (interview guide) and facilitating the meeting, and 3) receiving and analyzing feedback from participants.

Results

12 community members (6 PLWD and 6 care partners) participated in our three studios. Three study design factors were identified during the CES: recruitment process (trust and communication with the research team), participants’ autonomy, and trust and communication with clinicians. Spanish language community members raised similar issues to those in the English-speaking CES. However, Spanish language participants also noted the potential impact of interpreters during clinic visits.

Conclusions

CES were feasible, informative, and well-received by PLWD and led to changes in our study design. We describe strategies for engaging care partners and PLWD, Community Experts, to elicit valid and valuable recommendations for making research studies more relevant and impactful.