Better palliative care for Black and Hispanic people with Parkinson's and Lewy body dementia
Official title: 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
Funded at University of Rochester · NIH-11290717 · Data updated 2026-11-12
Designing culturally-tailored palliative care programs to better meet the needs of Black and Hispanic adults living with Parkinson's disease and Lewy body dementia.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Rochester NIH-funded |
| Lab location | 1 site (Rochester, United States) |
| Project start | March 1, 2025 |
| Project end | January 31, 2028 |
| Funding year | 2026 |
| Award (this year) | $231,000 |
| NIH project number | 5R34NS139965-02 |
| Project ID | NIH-11290717 on NIH RePORTER |
Who could benefit from this research
✓Could help
Black and Hispanic adults living with Parkinson's disease or Lewy body dementia, especially older adults and their caregivers, who are willing to share their experiences and work with community partners.
✕Less likely to help
People without Parkinson's disease or Lewy body dementia, or those not in the Black or Hispanic communities targeted by this project, are unlikely to benefit directly from this grant.
What this research studies
You and your family would be invited to help shape palliative care that fits your culture and community. Researchers will work with Black and Hispanic patients, caregivers, and community groups to learn about common needs and barriers through interviews and focus groups. The team will co-design training for clinicians and materials for families, and pilot processes to make sure they work in real-world community settings. This planning work is meant to prepare a larger effort to bring more equitable palliative care to people with PD and LBD.
Why it matters
Potential benefit: If successful, this work could lead to palliative care programs that reduce symptoms, improve quality of life, and increase access for Black and Hispanic people with Parkinson's and Lewy body dementia.
How similar studies have gone: Previous palliative care work in Parkinson's disease has shown benefits for symptoms and caregiver support, but culturally-tailored programs for Black and Hispanic communities remain largely untested.
Where this research is happening
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University of Rochester
Rochester, United States Active
Researchers
- Principal investigator: Kluger, Benzi M — University of Rochester
- Study coordinator: Kluger, Benzi M
Related research
Other NIH-funded projects on the same topics.
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Improving palliative care for people with Parkinson's disease and related disorders in Black and Hispanic communities
This study is all about improving care for people with Parkinson's disease and Lewy Body Dementia, especially in Black and Hispanic communities, by understanding their specific needs and finding better ways to support them and their families.
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Integrated palliative care for Parkinson’s disease and PD dementia: reducing low-value care and disparities
A study in people with Parkinson’s disease or Parkinson disease dementia tests how integrating palliative care can cut unnecessary hospitalizations and disparities.
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Examining how integrated palliative care affects health outcomes in Parkinson's disease and Lewy body dementia.
This study is looking at how adding palliative care can help people with Parkinson's disease and Parkinson's disease dementia feel better by managing their symptoms and planning their care, so they can avoid unnecessary hospital visits and get the support they need.
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Palmitoyltransferase and GBA1 function restoration in Parkinson’s and Lewy body dementia
A fast-moving study looks at whether tweaking a fat-attachment process on proteins can restore healthy enzyme function and slow the progression of Parkinson’s disease and Lewy body dementia.
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Palliative care at home for people with dementia
A team-based home palliative care program using community health workers, nurses, and social workers to support older adults with advanced dementia and their family caregivers.
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Improving palliative care for older adults with dementia who speak limited English
This study is looking at the difficulties older adults with Alzheimer's and similar conditions who don't speak much English face when trying to get palliative care, and it aims to find ways to make communication better and improve their quality of life.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.