Palliative Care at Home for Patients with Dementia

NIH RePORTER · NIH · R56 · $1,174,149 · view on reporter.nih.gov ↗

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
ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
Principal Investigator
Nathan E Goldstein
Activity code
R56
Funding institute
NIH
Fiscal year
2020
Award amount
$1,174,149
Award type
1
Project period
2020-05-15 → 2022-04-30