Elucidating effects of Alzheimer’s Caregiving using the Brain Health Registry

The overall goal of this project is to elucidate the impact of Alzheimer’s disease (AD) caregiving on the caregiver using a novel, innovative tool called the Brain Health Registry (BHR). The BHR is an Internet-based registry currently with over 36,000 participants, which collects detailed, longitudinal health, lifestyle, and cognitive data using self-report questionnaires and online neuropsychological tests (NPTs). This project responds to the Caregiving topic in the RFA, specifically “understanding and alleviating the emotional and physical impact of caring for a loved one with AD”, and “Improving the delivery of social support for AD caregivers”. Because we are proposing to conduct our study in a diverse cohort and assess effects of race and ethnicity on caregiver health outcomes, this project also responds to the Health Disparities RFA topic, specifically “understanding racial differences and their impact on risk.” The specific goals are: (a) To create an infrastructure within the BHR to capture online self-reported data from AD caregivers about their demographics, cognitive function, caregiving burden, stress, health, and lifestyle; (b) To capture longitudinal data from a large, diverse cohort of caregivers; (c) To analyze the effects of AD caregiving on caregiver health, stress, and cognition; (d) To reduce AD health disparities by analyzing the contributions of race, ethnicity, and socioeconomic status on caregiver health outcomes; (e) To improve social support of AD caregivers by providing them with online resources. The long-term goal is to improve strategies for protecting and promoting AD caregiver health.