Early and life course socioeconomic adversity and dementia risk in Hispanic/Latinos

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ABSTRACT The goals of this administrative supplement to Early and Life Course Adversities and Dementia Risk in Latinos (1RF1AG077639; contact PI: Isasi) are to (1) address Ethical, Legal, and Societal Implications (ELSI) of research examining social determinants of health and Alzheimer's Disease and Related Dementias (ADRD) risk, and (2) develop methods to assess health equity impact of the research. Social epidemiology has been at the forefront of the identification of health disparities and research to understand its root causes. However, this area of social epidemiology brings the risks of unintended individual, bystander and groups harms by contributing to perpetuating the stigma associated with poverty and experienced by minoritized populations, such as the Hispanic/Latino population. These unintended risks can emerge when: (1) findings regarding disproportionate ADRD risk are interpreted as failures of the individual rather than of society, (2) findings are misused or misinterpreted to exacerbate stigmatizing and discriminatory practices, (3) we fail to integrate community voices and recognize the social context, such as the experience of living with poverty. This administrative supplement aims to address this important research gap by implementing a model for the co- design of the study's dissemination strategies and for the interpretation of study results. In addition, this supplement brings a multidisciplinary perspective building on the ELSI framework. Furthermore, it also addresses the potential risk of stigma and discrimination based on identified cognitive decline, which may limit participation cognitive aging and ADRD research for minoritized populations. Another challenge of observational epidemiological research is that it may be perceived as distant from public health practice, without a direct action for improving health equity in ADRD or other outcomes. Furthermore, methods for assessing the health equity impact of observational studies are still lacking. This supplement will adapt a model for assessing the potential health equity impact of the parent study. In this supplement, we leverage our team ELSI expertise and the Bridging Research, Accurate Information and Dialogue (BRAID) approach, an innovative model for incorporating community member perspectives. BRAID will be used to bring community voices to address the potential for individual and group harms, including stigma, and to move from a deficits model to a community assets model that aligns epidemiological research with community needs, as we effectively communicate study findings to maximize impact on structural or policy changes.