Palliative Care at Home for Patients with Dementia

痴呆症患者的居家姑息治疗

• 批准号: 10688048
• 负责人: Nathan E Goldstein
• 金额: $ 79.36万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-01 至 2027-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10688048
• 关键词: Academy; Activities of Daily Living; Address; Advanced Practice Nurse; Affect; Algorithms; Alzheimer' s disease related dementia; American; Caregiver Burden; Caregiver support; Caregivers; Caring; Case Management; Chronic Disease; Communication; Communities; Community Health Aides; Complex; Control Groups; Country; Dementia; Dementia caregivers; Elderly; Elements; Eligibility Determination; Enrollment; Environment; Equipment and supply inventories; Family; Family Caregiver; Goals; Health system; Healthcare; Healthcare Systems; Home; Hospitalization; Hospitals; Impaired cognition; Improve Access; Individual; Inpatients; Intervention; Long-Term Care; Measures; Medical; Medicine; Mental Depression; Modeling; New York City; Nurses; Outpatients; Palliative Care; Patient Care; Patient Self-Report; Patients; Persons; Pharmaceutical Preparations; Physicians; Positioning Attribute; Prognosis; Provider; Quality of life; Randomized; Randomized Controlled Clinical Trials; Randomized, Controlled Trials; Registered nurse; Resources; Self Care; Services; Single-Blind Study; Site; Social Workers; Stress; Structure; Symptoms; Telephone; Time; Training; Underserved Population; United States National Institutes of Health; Visit; Work; acute care; advanced dementia; care costs; caregiver interventions; comparison control; cost; dementia care; depressive symptoms; effectiveness evaluation; end of life; end of life care; experience; functional disability; functional status; global deterioration scale; group intervention; health care service utilization; hospice environment; improved; innovation; loved ones; medical specialties; novel; preference; prevent; programs; psychosocial; satisfaction; symptom management; symptomatic improvement

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 depression while improving caregiver satisfaction with care. In exploratory analyses we will determine if the intervention decreases costs. Our model has the potential to improve care for thousands of Americans with dementia and their caregivers.

项目摘要/摘要