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

> **NIH NIH K02** · UNIVERSITY OF ROCHESTER · 2020 · $142,193

## Abstract

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
healt...

## Key facts

- **NIH application ID:** 10055394
- **Project number:** 1K02AG062745-01A1
- **Recipient organization:** UNIVERSITY OF ROCHESTER
- **Principal Investigator:** BENZI M KLUGER
- **Activity code:** K02 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $142,193
- **Award type:** 1
- **Project period:** 2020-09-15 → 2025-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10055394

## Citation

> US National Institutes of Health, RePORTER application 10055394, Advancing Palliative Care for Older Adults Affected by Neurodegenerative Disease: Parkinsons disease, Alzheimers disease and Related Dementias (1K02AG062745-01A1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10055394. Licensed CC0.

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