Rochester Reporter

A new research initiative aims to transform care for patients with Parkinson's disease, Lewy Body Dementia, and related neurodegenerative disorders among Black and Hispanic communities. This project targets disparities in care and outcomes for these underserved populations.

Parkinson’s disease, recognized as the fastest growing brain disease worldwide, traditionally focuses on motor symptoms. However, non-motor symptoms like pain, depression, and cognitive decline pose significant challenges, impacting the quality of life and increasing caregiver strain.

The study introduces palliative care, a strategy often linked with cancer treatment, as a model for addressing the full spectrum of needs in neurodegenerative conditions. This approach promises improved outcomes for patients and caregivers, but research on its impact in Black and Hispanic communities is limited. These groups often experience more severe symptoms and face challenges in accessing comprehensive care.

The study will be conducted in Rochester, NY, employing Community-Based Participatory Action Research (CBPAR) principles to address health disparities and foster social change. According to Phyllis Jackson, RN, founder and executive director of the Interdenominational Health Ministry Coalition (IHMC), "There is a critical gap in palliative care for brown and black communities."

Community partners integrating into the research include IHMC, Jordan Health, and the Ibero-American Action League, with collaborations from national leaders at the University of Southern California, Mayo Clinic, and Columbia University. This initiative aims to pave the way for clinical trials that will render palliative care more equitable and accessible.

Rochester's demographic and socio-economic challenges highlight the urgency of this research. It stands as one of the most segregated and economically challenged cities in the U.S., with significant portions of the population identifying as Black, Hispanic, or other minority groups and living in poverty. Historic underinvestment and environmental challenges compound these inequalities, making palliative care a community priority.

Supported by the University of Rochester Medical Center (URMC), a leader in clinical Parkinson’s research, the project benefits from URMC’s status as a Parkinson Foundation Center of Excellence and a Morris K. Udall Center for Parkinson Disease.