Building Capacity to Meet the Palliative Care Needs of People with Parkinson Disease, Lewy Body Dementia and Related Disorders living in Black and Hispanic Communities

Parkinson’s disease (PD), Lewy Body Dementia (LBD) and related disorders are the second most common neurodegenerative illness affecting over 1.5 million Americans and are the 14th leading cause of death in the United States. Notably, while PD is traditionally described by motor symptoms (e.g. tremor), more recent research demonstrates that nonmotor symptoms such as pain, depression, and dementia are leading causes of mortality, diminished quality of life, nursing home placement and caregiver distress. There is significant evidence that many of the needs most important to patients and family are poorly addressed under traditional care models and that palliative care—an approach to caring for individuals with serious illness that addresses multiple causes of suffering including medical symptoms, psychosocial issues and spiritual needs—may improve relevant patient and caregiver-centered outcomes. Unfortunately, progress in this field threatens to increase rather than diminish disparities in care. While mounting research shows palliative care improves outcomes in PD, these studies have largely failed to reach or include underserved populations. Studies to date have not dedicated sufficient resources to counter known disparities in neurologic and palliative care, nor have they utilized appropriate community engagement methods to overcome key barriers. This R34 planning grant represents the first step of community-based and engaged research to develop and assess culturally-tailored approaches to improve the reach of palliative care research for neurodegenerative illnesses and will lay the groundwork for future community-engaged clinical trials. The current proposal reflects ongoing work from a multidisciplinary team composed of academic and community members to explore how to modify current models of palliative care in PD to be culturally sensitive, accessible, scalable, and integrated into current healthcare institutions and systems serving the Black/African American and Hispanic communities. Notably, interest in this research topic was generated by our community advisory board and reflects their perception of pressing gaps in neurologic and palliative care services. Our Specific Aims are to: 1) Strengthen existing academic-community collaborations centered on palliative care for PD and LBD in Black/African American and Hispanic through principles of Community-Based Participatory Action Research (CBPAR); 2) Conduct qualitative assessments within the CBPAR model to identify the most important palliative care needs of Black/African American and Hispanic communities, information gaps, and preferences for receiving supportive care; and 3) Work with other national leaders in community engagement around PD and LBD to develop plans, processes and infrastructure to be ready to engage in multisite clinical trials of palliative care for people with PD in Black/African American and Hispanic populations. This research is Innovative as it represents the first applications of CBPAR to move towards improving the reach of neurology research. This research is Significant as it stands to improve person and family-centered care for a leading neurodegenerative illness, will lead to more scalable interventions, and will advance methods applicable to other neurologic illness. Project Number: 5R34NS139965-02 | Fiscal Year: 2026 | NIH Institute/Center: National Institute of Neurological Disorders and Stroke (NINDS) | Principal Investigator: BENZI KLUGER (+1 co-PI) | Institution: UNIVERSITY OF ROCHESTER, ROCHESTER, NY | Award Amount: $231,000 | Activity Code: R34 | Study Section: ZNS1-SRB-E(11) View on NIH RePORTER: https://reporter.nih.gov/project-details/11290717