Palliative Care for People Living at Home with Advancing Dementia and Their Caregivers

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Project Summary/Abstract This is an application for a K01 award for Krista Lyn Harrison, PhD, whose research focuses on improving life for older adults with Alzheimer’s disease and related dementias (ADRD) and their informal caregivers. Dr. Harrison is a health services and policy researcher and Assistant Professor in the Division of Geriatrics at the University of California, San Francisco (UCSF). Dr. Harrison has 12-years of experience in qualitative methods and led the research enterprise of a large hospice prior to completing a UCSF aging research fellowship and implementation science certificate. Through the activities proposed in this application, Dr. Harrison will strengthen and address gaps in her experience through a training plan focused on: a) advanced statistical methods in linked datasets, b) ADRD clinical care and research, and c) translating mixed-methods data into ADRD interventions. Resources to foster her career development include UCSF’s nationally-recognized Division of Geriatrics, Memory and Aging Center, Institute for Health Policy Studies, and K Scholar’s program, Dr. Harrison has assembled an extraordinary multidisciplinary team with extensive expertise. Alzheimer’s disease and related dementias are progressive incurable illnesses causing significant public health burden. Palliative care focuses on reducing suffering and improving quality of life by attending to the multi-dimensional sources of distress for seriously ill individuals and families. Evidence for quality palliative care for advanced ADRD comes primarily from research in nursing homes. For the more than 700,000 older adults with advanced Alzheimer’s disease who die at home each year, clinicians lack population-level evidence to guide caregivers and patients in anticipating and planning for disease changes. The proposed K01 will address critical knowledge gaps and develop a toolkit of resources to support basic palliative care provided by neurologists. Dr. Harrison will first use a nationally-representative dataset to longitudinally examine factors associated with mortality and nursing home stay among people living at home with severe and advancing ADRD. Second, she will use semi-structured interviews with older adults living at home with ADRD, current and bereaved caregivers to understand palliative and end-of-life experiences and opportunities to improve palliative care for ADRD. Third, Dr. Harrison will work with multiple stakeholders to refine and assess the feasibility of a toolkit of basic palliative care resources for use in neurology clinical practice (such as an assessment checklist, evidence-based strategies for discussing serious illness prognosis and advance care planning adapted for ADRD, referral and billing guides, and summarized evidence from Aims 1 and 2 on living at home with ADRD to inform anticipatory guidance). The goal of this toolkit is to improve neurologists’ communication with older adults living at home with advancing ADRD and/or their informal caregivers. The proposed research will provide Dr. Harrison with the preliminary data, training, and experience to support future competitive independent R-series applications to test the efficacy and effectiveness of her intervention.