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.

项目总结/摘要 患有晚期阿尔茨海默氏病和相关痴呆症的人对老年痴呆症患者提出了独特的挑战。 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。在家里照顾病人， 痴呆症对可能患有抑郁症的家庭照顾者提出了特别的挑战， 负担，并可能最终不满意他们所爱的人得到的照顾。姑息治疗，这不是 与临终关怀或临终关怀一样，适合满足这些患者及其家属的需求。 照顾者"痴呆症患者的家庭姑息治疗"（PCAH）将是一个四家医院，单盲， 随机对照，临床试验的一个创新的模式，以家庭为基础的姑息治疗的老年人与 痴呆症及其护理人员。干预患者将得到以姑息治疗为重点的金字塔式护理 提供者，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)注册护士（RN）这些提供者由姑息治疗高级实践护士支持 (APN)医生（MD）这种创新的模式比传统的姑息治疗团队更具有普遍性， 其集中在经过专业训练的MD或APN的稀缺且昂贵的资源上。我们的模式是 独特的结合传统的医疗（MD，APN，RN）和心理社会/社区为重点的供应商（CHW， SW）在姑息治疗背景下提供专业护理，加强与资源的联系， 患者的当地环境，并高度响应的文化背景，其中患者/照顾者二人组 做出关于医疗保健的决定。干预患者将接受定期和全面的 由社区卫生工作者、护士和社会工作者进行评估。团队将利用这些 评估，以创建全面的，个性化的护理计划，以解决患者的身体，心理和社会 和功能需求;照顾者的需求;提高对疾病，药物和目标的理解 服务;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，持续12个月。我们将注册， 随机选取150对晚期痴呆患者及其照顾者（共300例受试者）， 无论是干预还是增强控制（来自未接受痴呆症培训的CHW的护理人员访问）， 或姑息治疗）。晚期痴呆（定义为总体恶化量表> 6）伴近期艾德的患者 或医院就诊和功能状态差的患者将有资格入组。我们将确定干预是否： 改善痴呆症患者的症状控制; 医院;并减少照顾者的负担和抑郁，同时提高照顾者对护理的满意度。在 探索性分析，我们将确定干预是否降低了成本。我们的模型有潜力 改善对数千名美国痴呆症患者及其护理人员的护理。