Behavioral Change Following Culturally-Informed Biomarker Disclosure in Alzheimer’s Disease

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Project Summary Alzheimer’s Disease (AD) and Dementia-Alzheimer’s Type (DAT) prevalence is growing among older adults, and disproportionately so in Black seniors. Scientific advances have allowed for detection of protein biomarkers associated with AD and increased risk for DAT. Both cognitively healthy and symptomatic older adults are interested in their personalized PET amyloid and tau information. However, biomarker disclosure rarely occurs in either clinical or research settings, in part due to concerns about how patients will react to and use this information in the absence of validated treatments for DAT. While several studies have supported the safety of positron emission tomography (PET) amyloid disclosure in regards to psychological reactions, very few have examined actual behavior following risk feedback, and no studies have examined a prolonged timeline of behavior change. The therapeutic effect of health behavior and lifestyle change on cognition and functioning is well-established; however, whether disclosure may precipitate health-related change is unknown. Furthermore, no study to date has investigated tau disclosure. These questions are most pertinent to two populations: patients with amnestic Mild Cognitive Impairment (aMCI), for whom this feedback may be most motivating, and Black individuals, who may face biopsychosocial barriers to executing adaptive health related changes, even if motivated to do so. To date, no study has systematically addressed racial differences in reactions to risk disclosure or the mechanisms underlying these differences. This empirical gap highlights a timely opportunity to understand and address a potential source of disparity in AD diagnosis and treatment. The proposed project and closely aligned training plan will respond to this call by comparing behavior change in individuals who receive either ‘standard of care’ diagnostic disclosure, or diagnostic feedback enhanced by disclosure of combined PET amyloid and tau imaging. We will build from the robust framework of the Michigan Alzheimer’s Disease Research Center’s (MADRC) longitudinal cohort and two associated NIA-funded studies to recruit a biomarker-characterized and rigorously diagnosed sample of 50% Black and 50% White patients with aMCI. This sample will be randomly assigned to treatment condition, and then followed for bi-annual visits over two years. Specifically, we will use a mixed-methods approach to assess health behavior change (Aim 1a), advanced planning (Aim 1b), and research participation (Aim 1c), as well as how a known social determinant of health (healthcare access) influences change in these outcomes by racial group (Aim 2). The training in AD biomarker measurement and validation, ethical and public health implications of biomarker disclosure, racial-ethnic disparities in aging, and mixed methods approaches, in addition to the critical concepts explored in this study, will create the ideal foundation for the principal investigator to excel as an independent early career researcher in the field of minority cognitive aging.