Innovative Methods to Gather, Understand, And Incorporate Diverse Lived Experiences Into Dementia Research

Abstract

AbstractBackgroundAging and dementia researchers continue to face challenges in recruiting and retaining participants who represent demographically diverse communities. This continued and critical lack of representation threatens the generalizability and applicability of countless study findings and severely diminishes the field’s impact on clinical outcomes. Recruitment science evidence strongly recommends that to achieve equity researchers should design and conduct research hand‐in‐hand with the input of potential and current participants, as well as their loved ones. To do so, partnerships between researchers and demographically diverse communities must be built and maintained before, during, and after individual studies. Indeed, literature indicates that persons from demographically diverse communities want to contribute to research, even beyond traditional research participation, including serving on community advisory boards and sharing their lived experiences in public forums. This symposium will discuss innovative methods currently being used to gather, understand, and incorporate diverse lived experiences with the goal of improving aging and dementia research generalizability and applicability.MethodWe will discuss research methods that various stakeholders—including researchers, study sponsors, funders, and participant groups—can utilize throughout the research process, from conceptualization and conduct to dissemination.ResultThis presentation will highlight community‐based and participant‐centered recruitment and retention approaches that promote understanding and incorporating diverse older adults’ and carers’ lived experiences. Approaches that will be discussed include, lived experiences panels, community and/or participant advisory boards, research ambassadors, and inclusion in scientific conferences. Furthermore, this session will feature a lived experience panel comprised of demographically diverse persons along the dementia continuum, from at‐risk to living with dementia, and their care partners. This session can benefit researchers, clinical trialists, and the field of aging and dementia research, by expounding on the importance of and developing strategies to meaningfully engage with demographically diverse communities.ConclusionMeaningful understanding and incorporation of the lived experiences of persons representing demographically diverse backgrounds offers clear benefits to aging and dementia researchers to improve the applicability and translatability of research findings. The participant’s voice is essential in setting research priorities and addressing research‐related challenges to ultimately increase diverse research participation and facilitate equity in aging.