Impact of Precision Medicine on Patient and Caregiver Perceptions of Early Detection of Alzheimer’s Disease Risk

Precision medicine approaches to testing for risk of Alzheimer’s disease and related dementias (AD/ADRD) include neuroimaging (brain MRI and amyloid PET), genome sequencing, and standardized cognitive assessments. These interventions aim to identify individuals at risk of AD/ADRD prior to or early in disease onset to improve diagnosis and treatment. Although research has found no evidence of significant negative psychological outcomes as a result of learning genetic risks for AD, the psychological impact of precision medicine approaches including the disclosure of different types of study results together, incorporating neuropsychological and genetic testing together with neuroimaging biomarkers has been understudied. Additionally, validated measures assessing psychological consequences may overlook more subtle impacts such as increased level of worry or caregiver burden. Our study examines integration of precision medicine approaches into dementia diagnosis and care and their psychological impact, enrolling from a diverse population in the Houston community and neurology outpatient clinics. Participants complete pre-surveys before and post-surveys 6 weeks after results disclosure. Participants and their study partners (their potential or actual caregiver) answer questions about their dementia worry, caregiving burden, and attitudes toward testing. Study materials and surveys are available in Spanish. To date, 75% of the 44 participants enrolled in the project had no cognitive impairment, 20.5% had a clinical diagnosis of AD, and 4.5% had mild cognitive impairment. This is a flash presentation of our preliminary results on the impact of disclosure of genetic and neuroimaging biomarkers on patients and their study partners enrolled in a precision medicine study of AD.

Jill Robinson – Center for Medical Ethics and Health Policy – Baylor College of Medicine; Hadley Smith – Department of Population Medicine – Harvard Medical School; Janet Malek – Center for Medical Ethics and Health Policy – Baylor College of Medicine; Christian Ross – Center for Medical Ethics and Health Policy – Baylor College of Medicine; Jamie Fong – Molecular & Human Genetics - Clinic Program – Baylor College of Medicine; Nora Vanegas-Arroyave – Center for Alzheimer’s and Neurodegenerative Diseases – Baylor College of Medicine; Hiba Saade – Center for Alzheimer’s and Neurodegenerative Diseases – Baylor College of Medicine; Chi-Yin Ling – Department of Neurology – Baylor College of Medicine; Joshua Shulman – Department of Neurology – Baylor College of Medicine; Amy McGuire – Center for Medical Ethics and Health Policy – Baylor College of Medicine