Community-Engaged Recommendations for Empowering People Living With Dementia to be Research Collaborators

Abstract

As cases of Alzheimer's disease and related dementias (ADRD) increase worldwide, research design has placed additional emphasis on social and behavioral factors that affect ADRD symptomatology and quality of life. Despite this, few studies have incorporated people living with ADRD as research partners. We propose 5 community-engaged recommendations for incorporating people living with ADRD into future research as full collaborators. The proposed recommendations center the experiences of people living with ADRD as crucial contributions to scientific inquiry. The guidelines are based on experiences at a 2-day "Empowering Partnerships" workshop in 2019; post workshop activity continued through 2021 with ongoing collaborations, analysis, and reflective practice. The workshop and subsequent conversations engaged a network of people living with ADRD, informal carepartners, and researchers to collectively build their capacities to partner in all aspects of person-centered research. To empower people living with ADRD as research partners, we recommend that research teams (a) create a flexible schedule of communication and/or meetings to accommodate a wide range of ADRD symptoms, (b) generate team-specific communication strategies/guidelines, (c) incorporate lived experiences of people living with ADRD into research protocols, (d) involve people living with ADRD in all aspects of a project, beginning in the developmental stages, and (e) incorporate skilled facilitators to facilitate communication between stakeholder groups. This multi-vocal approach to research will diversify ADRD research and ensure that projects align with the priorities and capacities of principal stakeholders by incorporating individuals with a wide range of cognitive capabilities that more fully represent the diversity of ADRD experiences.

Keywords: Alzheimer’s disease and related dementias; Community-based participatory research; Recruitment and retention; Social stigma.