Palliative Care at Home for Patients with Dementia

痴呆症患者的居家姑息治疗

• 批准号: 10525038
• 负责人: Nathan E Goldstein
• 金额: $ 83.13万
• 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/10525038
• 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; Communities; Community Health Aides; Complex; Control Groups; Country; Dementia; Dementia caregivers; Elderly; Elements; 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; base; care costs; caregiver depression; caregiver interventions; 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; personalized care; 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 患有晚期阿尔茨海默氏病和相关痴呆症的人对 医疗保健系统；他们通常具有复杂的慢性疾病轨迹，包括认知和 功能障碍。它们还受到症状控制不足。照顾家里的病人 痴呆症对可能遭受抑郁症，护理人员增加的家庭护理人员面临特殊的挑战 负担，最终可能对亲人所接受的照顾不满意。姑息治疗，不是 与临终关怀或临终关怀相同的事情适合满足这些患者及其其需求 照顾者。 “痴呆症患者在家的姑息治疗”（PCAH）将是一个四医院，单盲， 针对老年人的家庭姑息治疗创新模型的随机控制，临床试验 痴呆症及其护理人员。干预患者将通过聚焦的姑息治疗金字塔来照顾 提供者，其中包括经过特殊培训的社区卫生工作者（CHW）的核心，社会工作者 （SW）和注册护士（RN）。这些提供者得到姑息治疗高级实践护士的支持 （APN）和物理学（MD）。这种创新模型比传统的姑息治疗团队更具普遍性， 这些以特殊训练的MD或APN的稀缺和昂贵资源为中心。我们的模型是 在结合传统医学（MD，APN，RN）和心理社会/以社区为中心的提供商（CHW，CHW， SW）要在姑息治疗环境中提供专业护理，请加强与资源的联系 患者的当地环境，对患者/护理人员二元组的文化背景有很高的反应 做出有关医疗保健的决定。干预患者将获得常规而全面的 社区卫生工作者，护士和社会工作者的评估。团队一起使用这些 评估以制定全面，个性化的护理计划，以解决患者的身体，社会心理 和功能需求；看护人的需求；提高疾病，药物和目标的理解 关心;并帮助协调服务。 PCAH团队将继续与患者 /护理人员合作 面对面的访问（亲自或通过视频）和（至少）每周电话12个月。我们将注册 将150个晚期痴呆症患者及其护理人员（总共300名受试者）随机分配 干预措施或增强控制（从CHW访问护理人员而无需训练痴呆症 或姑息治疗）。患有晚期痴呆的患者（定义为全球定义量表> 6），最近 或医院就诊和功能差的状态将有资格参加。我们将确定干预是否： 改善痴呆症患者的症状控制；减少住院和患者日期 医院;并减少护理人员的燃烧和抑郁症，同时提高护理人员对护理人员的满意度。在 探索性分析我们将确定干预措施是否下降。我们的模型有潜力 改善成千上万患有痴呆症及其护理人员的美国人的护理。