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 five 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 two-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 1) create a flexible schedule of communication and/or meetings to accommodate a wide range of ADRD symptoms, 2) generate team-specific communication strategies/guidelines, 3) incorporate lived experiences of people living with ADRD into research protocols, 4) involve people living with ADRD in all aspects of a project, beginning in the developmental stages, and 5) 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.

“When she goes out, she feels better:” co-designing a Green Activity Program with Hispanic/Latino people living with memory challenges and care partners

“…Our finding that co-design was a successful form of engagement for people living with memory challenges at the early stages builds on previous work calling for their inclusion in research (Tanner, 2012;Littlechild et al, 2014;Griffith et al, 2023). Our findings highlight the importance of flexibility in including people living with memory challenges in research and aligns with Griffith et al (2023).…”

“…While it is ideal to keep uniformity of interview methods, strict methodological rigor can result in the exclusion of people living with memory challenges. Griffith et al ( 2023 ) states, “Flexible attendance/participation also allows individuals with more advanced symptoms to continue participating and contribute insight from a rarely included perspective” (p. 4). Participants also requested flexible participation in the GAP which was built into the final design of the program with options for frequency and duration based on need.…”

“…An ambassador who identified as Hispanic/Latino, spoke Spanish, and had parents living with memory challenges greeted participants to help them feel comfortable. Individual co-design interviews were offered for participants who were unable to attend group co-design group sessions based on recommendations for flexible engagement options to support the inclusion of people living with memory challenges in research (Griffith et al, 2023 ).…”

Exploration of the Content and Structure of Preferences for Leisure Activities of People Receiving Adult Day Services Using Concept Mapping

“…However, the required abstractness of the research approach led us to adapt our procedure so that we did not identify additional higher areas of meaning in our conceptualization by the people involved. Therefore, in view of the increase in research involving the public ( Griffith et al, 2023 ; Rommerskirch-Manietta, Manietta, et al, 2023 ), it seems necessary to further develop research methods so that they are more feasible for the nonacademic population.…”

A service‐oriented approach to clinical trial recruitment for dementia and brain health: Methods and case examples of MyAlliance for Brain Health

“…18 However, views of research participation are evolving, 19 with research teams increasingly realizing the need to initiate a trustworthy research partnership that includes transparent communication and the bidirectional flow of health information and resources. 20,21 The goal of MyAlliance is to create a comprehensive, valuebased research recruitment infrastructure by emphasizing service and empowerment of all parties affected by ADRD, including primary care providers (PCPs), social workers, service organizations, and families.…”