Reducing racial disparities in AD/ADRD: Addressing structural discrimination and resilience

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African Americans are more than twice as likely to have Alzheimer’s disease/Alzheimer’s disease related dementias (AD/ADRD) as Whites. This is a preventable gap. The simple yet innovative long-term vision of this LEADR proposal is to erase racial disparities in AD/ADRD burden. In this project, we will 1) develop a measure of structural discrimination and resilience, 2) use it to predict outcomes in AD/ADRD and 3) develop interventions to decrease prevalence and increase resilience. Understanding how to equalize the Black and White AD/ADRD burden will reveal mechanisms that will optimize prevention and care for all. With historical data, innovative approaches, and a commitment to addressing this disparity, we can achieve this objective. The functional impact of AD/ADRD is never due solely to individual decline; it reflects interactions between a person’s decline, their ability to compensate, and the demands of the environment. The resilience to compensate is not just an individual matter, it has many domains including the ability to use remaining intact brain function, coping skills, family support, physical layout of the home, and multiple community and policy factors. Although structural discrimination and resilience are relevant to AD/ADRD and function, there are currently no measurement instruments. We will use the sequential exploratory mixed methods Instrument Design Model in which researchers incorporate key stakeholders into the instrument design process. This instrument will measure eight dimensions of structural discrimination and resilience plus family support, greenspace, and social connection. Zip codes across the lifespan will be used to merge historical data to measure multiple risk or protective factors such as school district funding, environmental toxins, and amount of accessible greenspace. We will construct the instrument with older adults and researchers, cognitively test, pilot test, refine and then field the instrument in national datasets supported by the NIH. The intervention development stage will include: 1) insights from the previous qualitative portions; 2) results of the data collection phase; 3) insights from a larger stakeholder groups of policy makers, researchers, advocates, people living with AD/ADRD and their families to review findings and identify potential intervention mechanisms. This program of work will move beyond individual and family interventions to address the structural determinants of AD/ADRD. Developing a reliable, valid measure of structural racial discrimination, being able to test its role in AD/ADRD, and then to use it as a framework for developing population-level interventions, is a high-risk, high-reward goal - worthy of the NIH investment in AD/ADRD. A significant side benefit is that because many other conditions related to structural discrimination are also on the causal pathway to AD/ADRD, this effort will also enhance our understanding of hypertension, stroke, heart disease, and other inflammatory diseases. The project uses the distinct strengths of the applicant, the outstanding research environment, and existing NIA resources to work towards solving crucial disparities that tax families and society.