Development of Culturally-Sensitive and Patient-Centered Feedback for Alzheimer's Dementia Risk Disclosure

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Project Summary: Development of Culturally-Sensitive and Patient-Centered Feedback for Alzheimer's Dementia Risk Disclosure With improvement in neuroimaging and biomarker measurement, earlier detection of Alzheimer's disease (AD) has been made possible. Similarly, these methods have informed risk for Dementia – Alzheimer's Type (DAT), the advanced phenotypic presentation of AD. Accordingly, patient interest in understanding their personal risk for DAT has grown exponentially, with up to 90% of the population requesting DAT feedback. While studies have produced general suggestions for providing feedback about individual risk factors, no study has systematically compared patient and family member preferences for the amount and type of risk disclosure information received (standard clinical information, genotype, neuroimaging, biomarkers). Without understanding the expectations of diverse patient populations for DAT risk disclosure, we cannot effectively communicate the information gained through recent scientific advances, creating a translational problem. Furthermore, a critical oversight of existing DAT risk disclosure literature is an inattention to the patient-specific factors that dictate preferences for and ability to adapt to DAT risk feedback. In particular, psychological and sociocultural differences experienced by African-American patients and families are critical factors dictating feedback preferences and utility, but have not previously been evaluated in risk disclosure literature. The lack of culturally-informed feedback protocols represents an ethical and practical challenge facing all AD researchers, and an opportunity to directly address a potential source of healthcare disparities in a vulnerable population. The proposed project will respond to these identified empirical gaps by developing semi-structured feedback protocols for DAT risk disclosure that are informed by patient-specific characteristics, preferences and rationale. In Year 1, we will utilize the Michigan Alzheimer's Disease Core Center's longitudinal cohort to conduct a systematic assessment of the needs and desires of a racially diverse sample of cognitively intact or MCI-diagnosed patients and their caregivers (Specific Aim 1). Specifically, we will investigate the desired level of risk information (none, based on readily clinically available information, genetic information, quantitative neuroimaging, and/or amyloid and tau biomarker burden), as well as personal motivations for requesting this information, in a sample of African-American and White older adults. The needs assessment will also analyze patient-specific factors that influence risk disclosure preferences in these samples, through the lens of the Health Belief Model. In Year 2 we will develop and pilot patient-centered feedback protocols informed by the results of Year 1, with immediate and follow-up measurement of patient and informant satisfaction, comprehension, and psychological reactions (Specific Aim 2). These protocols will represent a foundational first step towards culturally-sensitive, flexible DAT risk disclosure, appropriate across demographic groups.