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.

项目概要/摘要 患有晚期阿尔茨海默病和相关痴呆症的人给我们带来了独特的挑战 医疗保健系统；他们通常有复杂的慢性疾病轨迹，包括认知和 功能障碍。他们的症状也得不到充分控制。在家照顾病人 痴呆症给可能患有抑郁症的家庭照顾者带来了特殊的挑战，增加了照顾者 负担，并可能最终对其亲人所接受的护理不满意。姑息治疗，这不是 与临终关怀或临终关怀相同，适合满足这些患者及其患者的需求 照顾者。 “痴呆症患者在家姑息治疗”（PCAH）将由四家医院、单盲、 针对患有老年痴呆症的老年人的家庭姑息治疗创新模式的随机对照临床试验 痴呆症及其照顾者。干预患者将受到以金字塔为重点的姑息治疗的照顾 其核心包括经过专门培训的社区卫生工作者（CHW）、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执业护士的支持 （APN）和医师（MD）。这种创新模式比传统的姑息治疗团队更具有普遍性， 它们以经过专业培训的医学博士或 APN 的稀缺且昂贵的资源为中心。我们的模型是 独特地将传统医疗（MD、APN、RN）和心理社会/社区为中心的提供者（CHW、 SW）在姑息治疗背景下提供专门护理，加强与资源的联系 患者的当地环境，并且对患者/护理人员二人组所处的文化背景高度敏感 做出有关医疗保健的决定。干预患者将接受定期和全面的治疗 由社区卫生工作者、护士和社会工作者进行的评估。团队将共同使用这些 评估以制定全面的、个性化的护理计划，以解决患者的身体、心理社会问题 和功能需求；照顾者的需求；增进对疾病、药物和目标的了解 关心;并帮助协调服务。 PCAH 团队将继续与患者/护理人员合作 面对面拜访（亲自或通过视频）和（至少）每周一次电话，持续 12 个月。我们将报名并 将 150 名晚期痴呆症患者及其护理人员（总共 300 名受试者）随机分组接受治疗 干预或强化控制（未经痴呆症培训的社区卫生工作者拜访护理人员） 或姑息治疗）。近期患有 ED 的晚期痴呆症患者（定义为整体恶化量表 >6） 或去医院就诊且功能状态不佳将有资格参加。我们将确定干预是否： 改善痴呆症患者的症状控制；减少住院人数和患者天数 医院;减少护理人员的负担和抑郁，同时提高护理人员对护理的满意度。在 我们将通过探索性分析来确定干预措施是否会降低成本。我们的模型有潜力 改善对数千名患有痴呆症的美国人及其护理人员的护理。