Highlights from Alzheimer’s Association International Conference 2022 & underrepresentation in dementia research
While attending the Alzheimer’s Association conference, I was a guest speaker on the Dementia Researcher podcast. Among the two other guests, we all had one major highlight, a fantastic session on “Navigating the crisis of underrepresentation in ADRD research: New directions and best practices”. An eye-opening session focussed on the unique challenges facing memorised groups living with dementia, failures in research of including minority groups in research and fresh ideas to address underrepresentation.
Links to the podcast, information on Dementia Researcher, session descriptions and speakers are included below.
Dementia Researcher
Session Description:
Across a host of Western countries, persons from minority groups are increasingly recognized to be severely and persistently underrepresented in clinical research on Alzheimer’s disease and related disorders (ADRD). Early investigations into this problem consisted mainly of small, descriptive studies and bespoke interventions focused on participant-related barriers to research enrolment (like mistrust), often among persons of colour. This Featured Research Session will highlight recent conceptual and methodological advances in the field of recruitment, engagement, and retention (RER) science, present new findings from research being conducted in various regions of the United States, and call on ADRD investigators to action in identifying concrete ways to intervene amidst the current crisis of underrepresentation in clinical research. The first two presentations will discuss ongoing, transdisciplinary efforts to rigorously characterize historical and current issues impacting research participation across a range of marginalized and minority communities. The following three presentations will feature innovative approaches to increasing ADRD research participation within specific underrepresented populations. The final presentation will provide a rationale for expanding the concept of research inequities beyond biological disparities and systemic inequities, incorporating researcher-related barriers to research enrolment.
Session Presenters:
- Kylie M Smith (Emory University, GA, USA) – Incorporating history into disparities research: A model for interdisciplinary collaboration and trust building
- Nicole Taikeff (CARE Research Center Massachusetts General Hospital, MA, USA) – Early norming data for engagement and recruitment of diverse populations into ADRD research
- Jennifer H Lingler (University of Pittsburgh Alzheimer’s Disease Research Center (ADRC), PA, USA) – Mechanisms by which culturally-informed narratives may promote ADRD research enrollment among African American adults
- Jason D. Flatt (University of Nevada Las Vegas, NV, USA) – Promoting Inclusion of Sexual and Gender Minority Individuals in Aging and Alzheimer’s Disease and Related Dementias Research
- Krystal R. Kittle (University of Nevada Las Vegas, NV, USA) – Caregiving Experiences and Health of LGBTQ+ Caregivers: Results from the Equality in Caregiving Study
- Jonathan D. Jackson (Massachusetts General Hospital, Harvard Medical School, MA, USA) – A Methodological Framework for Investigating Diversity in Clinical Research