# Palliative Care at Home for Patients with Dementia

> **NIH NIH R56** · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · 2020 · $1,174,149

## Abstract

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 and poor quality of life. 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 and (at least) weekly phone calls for 12 months. We will enroll and
randomize 400 subjects - a combination of patients and their caregivers – 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 and quality of life in persons with dementia; decreases caregiver burden, depression, and
improves caregiver satisfaction with care; and decreases patient days in the ho...

## Key facts

- **NIH application ID:** 10136132
- **Project number:** 1R56AG067045-01
- **Recipient organization:** ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
- **Principal Investigator:** Nathan E Goldstein
- **Activity code:** R56 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $1,174,149
- **Award type:** 1
- **Project period:** 2020-05-15 → 2022-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10136132

## Citation

> US National Institutes of Health, RePORTER application 10136132, Palliative Care at Home for Patients with Dementia (1R56AG067045-01). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10136132. Licensed CC0.

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