Impacts of receiving Alzheimer's disease genetic risk information among Latinos in northern Manhattan

PROJECT SUMMARY This study will assess the psychosocial and behavioral impacts of receiving a risk assessment for late- onset Alzheimer's disease (LOAD) incorporating APOE genotypes among Latinos in northern Manhattan. We will conduct a longitudinal, community-based study with a mixed methods design and diverse, nuanced, and sensitive assessments of impact. Participants will be randomized to learn about their lifetime risk of LOAD based either on (a) ethnicity and family history alone (genotype nondisclosure group), or (b) the same factors plus APOE genotype (genotype disclosure group). Impacts will be evaluated at 6 weeks, 9 months, and 18 months after risk assessment. In the quantitative study component, we will assess psychosocial outcomes, memory test performance, and health-related behaviors. The primary endpoints are a significant difference between the genotype disclosure and nondisclosure groups' scores on: (1) the Impact of Genetic Testing in AD scale, (2) the Impact of Events Scale, (3) the Metamemory in Adulthood Questionnaire, and (4) the Brief Test of Adult Cognition by Telephone. The secondary endpoints are significant differences in symptoms of depression or anxiety, health- related behavior changes, perceived threat of AD, and recall and understanding of risk information. We will also investigate factors that underlie variability in response and explore the patterns of longitudinal response to the receipt of genetic information. In the qualitative study component, we will use a stress and coping theoretical framework to investigate the lived experience of receiving personal AD risk information. This will include examination, at each time point, of the ways in which participants understand and appraise AD risk information, how this is influenced by their lay belief systems about genetics and AD illness representations, and what coping strategies they enact to contend with their risk, its perceived implications, and the adaptive challenges it may pose. We will also assess how coping strategies change over time and the contextual factors and conditions associated with those changes, including Latino cultural values and norms; and how different coping strategies may enhance or impede adjustment to AD risk information. The results will help identify persons at high risk for adverse consequences of APOE testing and inform interventions to assist them to cope effectively. The information will be important for tailoring genetic education or counseling interventions to Latinos.