The Inclusion of Multiracial Participants in Alzheimer’s Disease Research

Alzheimer’s disease (AD) is a growing public health issue which disproportionately affects ethnoracially minoritized individuals and efforts have been made to increase the diversity of research samples. Neuropsychology plays an important role in Alzheimer’s disease and related dementias (ADRD) research as it is used to characterize symptom profiles and disease trajectories. In neuropsychological research, racial identity often acts as a proxy, representing common lived experiences such as school segregation, Native American boarding schools, and other differential treatment on the basis of race which may ultimately influence cognition or its measurement. Despite calls for more ethnoracially representative research that accounts for diverse lived experiences, data from multiracial participants (those identifying with two or more racial groups) seem absent from the literature, with current research focusing on monoracially identified participants. Methods for analyzing and reporting data in ADRD studies have not been established but are needed, as the use of multiracial data regularly requires its misrepresentation or exclusion. Given the confluence of disease, cognition, and race, further research is needed to ensure the ethical inclusion of neuropsychological data from multiracial participants. This dissertation sought to explore the inclusion of multiracial participants and their neuropsychological data in ADRD research through three unique research projects. Study One characterized the use of neuropsychological data from multiracial participants in ADRD research literature and made recommendations for improved inclusion. Study Two examined the impact of typical clinical trial inclusion and exclusion criteria on participant eligibility and retention, with a special focus on multiracial individuals. Through interviews with multiracial adults, Study Three explored common themes in reactions to current common classifications in the analysis of data from multiracial participants to better inform analytical practices. Findings from this dissertation have implications for the inclusion of multiracial participants and their neuropsychological data from study design through recruitment, participation, analysis and reporting.