# Palliative Care at Home for Patients with Dementia

> **NIH NIH R01** · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · 2024 · $793,640

## Abstract

PROJECT SUMMARY / ABSTRACT
Persons with advanced Alzheimer’s disease and related dementias present unique challenges for the
healthcare system; they typically have complex chronic illness trajectories that encompass both cognitive and
functional impairments. They are also subject to inadequate symptom control. Caring for a patient at home with
dementia poses particular challenges for family caregivers who may suffer depression, increased caregiver
burden, and may ultimately be dissatisfied with the care their loved ones receive. Palliative care, which is not
the same thing as hospice or end-of-life care, is suited to meet the needs of these patients and their
caregivers. “Palliative Care at Home for Patients with Dementia” (PCAH) will be a four-hospital, single-blinded,
randomized-controlled, clinical trial of an innovative model of home-based palliative care for older adults with
dementia and their caregivers. Intervention patients will be cared for by a pyramid of palliative care focused
providers, the core of which comprises specially trained community health workers (CHW), social workers
(SW), and registered nurses (RN). These providers are supported by a palliative care advanced practice nurse
(APN) and physician (MD). This innovative model is more generalizable than traditional palliative care teams,
which are centered on the scarce and expensive resources of specialty-trained MDs or APNs. Our model is
unique in combining traditional medical (MD, APN, RN) and psychosocial/community-focused providers (CHW,
SW) to provide specialized care within a palliative care context, strengthen connections to resources in
patients’ local environment, and is highly responsive to the cultural context in which the patient/caregiver dyad
make their decisions about healthcare. Intervention patients will receive regular and comprehensive
assessments by the community health worker, nurse, and social worker. Together, the team will use these
assessments to create comprehensive, individualized, care plans to address patients’ physical, psychosocial
and functional needs; caregivers’ needs; improve understanding around illness, medications, and goals of
care; and help coordinate services. The PCAH team will continue to work with the patient / caregiver though
face-to-face visits (in person or via video) and (at least) weekly phone calls for 12 months. We will enroll and
randomize 150 dyads of patients with advanced dementia and their caregivers (total 300 subjects) to receive
either the intervention or an augmented control (visits to the caregiver from a CHW without training in dementia
or palliative care). Patients with advanced dementia (defined as a global deterioration scale >6) with recent ED
or hospital visits and poor functional status will be eligible for enrollment. We will determine if the intervention:
improves symptom control in persons with dementia; decreases hospital admissions and patient days in the
hospital; and decreases caregiver burden and depr...

## Key facts

- **NIH application ID:** 10895555
- **Project number:** 5R01AG067045-03
- **Recipient organization:** ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
- **Principal Investigator:** Nathan E Goldstein
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $793,640
- **Award type:** 5
- **Project period:** 2022-09-01 → 2025-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10895555

## Citation

> US National Institutes of Health, RePORTER application 10895555, Palliative Care at Home for Patients with Dementia (5R01AG067045-03). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10895555. Licensed CC0.

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