Improving Information Sharing Between Family Caregivers and Home Care Aides Caring for Persons Living with ADRD

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PROJECT SUMMARY Dr. Chanee Fabius is an Assistant Professor in the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health. Her career goal is to become an independent investigator conducting high-impact embedded pragmatic clinical trials (ePCTs) directed at testing interventions, policies and programs in real world settings to better support the home care workforce and improve care quality and quality of life among those receiving services, including persons living with Alzheimer’s Disease and related dementias (ADRD) and their family caregivers. This award will provide her with the protected time and learning experiences to obtain the knowledge, skills, and capability to develop ePCTs and translate findings into routine home care delivery. Dr. Fabius’s career development award proposes five years of training in mixed methods, human factors approaches in home care research, and applied experiences developing and conducting ePCTs. Dr. Fabius has assembled a stellar mentorship team and advisory panel with expertise in the areas of her proposed training goals. As a result of disease progression, high care needs, and limited financial resources, persons living with ADRD often receive Medicaid Home and Community-Based Services, delivered by home care aides proving hands on assistance with daily activities. Family caregivers and home care aides interact to provide care for older adults, but their relationship is often fraught due to gaps in information, misalignment of role expectations, and lack of shared understanding of each other’s roles in home care. The proposed K01 will: (1) leverage nationally representative data to determine how role sharing between family caregivers and home care aides differs among Medicare-Medicaid enrolled home care recipients with and without ADRD, and is associated with older adults’ participation restrictions; (2) conduct a qualitative study to develop and refine a home care role and preference guide to improve information sharing and clarify role expectations between family caregivers and home care aides caring for older Medicaid HCBS recipients living with ADRD; (3) assess the feasibility and acceptability of delivering a home care role and preference guide to family caregivers of older adults living with ADRD and home care aides. The intervention will be piloted in up to five agencies within 10 triads of older adults living with ADRD, family caregivers, and home care aides. The proposed work is aligned with recent policy and research recommendations calling for interventions that support quality of life for older adults living with ADRD, family caregivers, and home care aides. Findings will support the development and submission of an R01 grant proposal to implement and test an ePCT in Medicaid HCBS to assess the effects of the role and preference guide and quality of life outcomes for older adults, family caregivers, and home care aides.