Advancing Palliative Care for Older Adults Affected by Neurodegenerative Disease: Parkinsons disease, Alzheimers disease and Related Dementias

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Project Summary/Abstract: Neurodegenerative illnesses such as Parkinson’s (PD), Lewy Body Dementia (LBD) and Alzheimer’s disease (AD) affect nearly 15% of adults over age 65 and are leading causes of death in the US. While these illnesses are traditionally defined by their neurologic symptoms, more recent research describes the high impact of other medical symptoms on patients and the immense psychosocial consequences of these illnesses on both patients and families. Unfortunately, multiple lines of evidence demonstrate that many of the needs most important to patients and caregivers (e.g. pain management, advance care planning, end-of-life care) are poorly addressed under current care models. Palliative care is an approach to caring for individuals with life-limiting illness that addresses potential causes of suffering including physical symptoms, psychosocial issues and spiritual needs. To date there have been limited attempts to apply these principles to neurodegenerative illnesses despite evidence that patients’ and caregivers’ unmet needs may be amenable to this approach. Notably, the candidate has played a central role among a growing cadre of academic centers that now offer palliative care services for neurodegenerative illnesses and presents results from a randomized trial of academic-based outpatient palliative care that convincingly demonstrate this approach improves patient and caregiver outcomes over current standards of care. While efficacy trials are critical to forwarding this field, barriers to their dissemination include a limited workforce of palliative care specialists, lack of palliative education amongst neurologists, lack of team-based resources in community settings, and patient mobility/transportation issues. The long-term goal of the candidate is to improve outcomes and raise standards of care for older adults affected by neurodegenerative illnesses through novel, efficient and effective models of delivering palliative care. The Research Aims of this award will be met through: Study 1: Determine the effectiveness and feasibility of individual palliative care training for community neurologists and team-based virtual house calls for PD/LBD patients and caregivers (funded R01); Study 2: Develop a community-based model of palliative care for AD patients and caregivers (funded NIA AD Administrative Supplement; R01 trial to stem from results); Study 3: Determine the effectiveness and feasibility of a novel online community model to support community-based palliative care for PD/LBD (R01 Under Review); and Study 4: Integrate geriatric principles and care into our neuropalliative care model to improve outcomes for patients and caregivers affected by neurodegenerative illness (future P01 grant). As this is an emerging research direction for the candidate, the Career Development Objectives will provide formal training in academic leadership, geriatric palliative care, implementation science, caregiver support, telehealth and healthcare policy. This proposal is significant because it will create a foundation for palliative care dissemination efforts relevant to neurodegenerative illness and the broader field of geriatric palliative care.