Mapping the Dynamics of Caregiver Burden in Alzheimer's Disease

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SUMMARY AND ABSTRACT In this Mentored Research Scientist Career Development Award (K01) Mapping the Dynamics of Caregiver Burden in Alzheimer's Disease, medical anthropologist and health policy researcher Dr. Alissa Bernstein, PhD, MPH, based at the University of California, San Francisco, requests research and salary support to provide protected time and dedicated mentored training in her transition to becoming an independent investigator. Dr. Bernstein's goal is to build the skills and knowledge required to become an independent investigator who can use mixed methods to understand and address challenges that occur at the intersection of clinical practice, the community, and policy in dementia. The research project proposed in this application focuses on the challenge of caregiver wellbeing as a first step towards her long-term career objective. Through the project, Dr. Bernstein aims to integrate knowledge about the social and environmental conditions of caregivers of individuals with Alzheimer's disease into understandings of caregiver burden, resilience, and resource use. To become an independent researcher, Dr. Bernstein will be supported by an outstanding mentorship team of clinicians and social scientist researchers at UCSF, a world-class research and training institution with a strong commitment to multidisciplinary research and clinical practice focused on dementia, aging, and caregiving. Dr. Bernstein will utilize these resources to develop knowledge and skills in the following areas through coursework, seminars, mentored tutorials, and practical experience: (1) Geographic Information Systems (GIS) technology; (2) Advanced mixed-methods research and data analysis; (3) The science of caregiving in dementia; (4) Professional advancement skills required for independence. Using these skills, the proposed research assesses the social and emotional experiences and spatial movement of caregivers of people with Alzheimer's disease (AD) in the home and community. Over 15 million family members or friends provide care for individuals with AD or other dementias in the U.S. Many caregivers experience caregiver burden, and are at a high risk for social isolation and loneliness, all of which can have negative impacts on health and wellbeing. Yet, only a quarter of caregivers access support resources. We do not fully understand how to intervene in caregivers' experiences in the home and community to reduce burden. The proposed research will be conducted amongst spousal caregivers of people with AD through the following research aims: (1) Map and analyze the objective spatial activity of family caregivers living with people with Alzheimer's disease; (2) Examine and characterize family caregivers' subjective social networks and emotional experiences; and (3) Create and analyze integrated visual representations of objective spatial data and subjective social experiences to identify potential interventions. This research will provide guidance in designing interventions integrating qualitative and spatial analyses to improve caregiver wellbeing.