Palliative Care at Home for Patients with Dementia

项目摘要/摘要 晚期阿尔茨海默病和相关痴呆患者面临着独特的挑战 医疗保健系统；他们通常有复杂的慢性病轨迹，包括认知和 功能障碍。他们还受到症状控制不足的影响。在家中照顾病人 痴呆症给可能患有抑郁症的家庭照顾者带来了特别的挑战，增加了照顾者 负担，最终可能会对他们所爱的人所得到的照顾感到不满。姑息治疗，这不是 与临终关怀或临终关怀相同的东西，适合满足这些患者和他们的需求 照顾者。“痴呆症患者的居家姑息治疗”(PCAH)将是一个由四家医院、单盲、 老年人家庭姑息护理创新模式的随机对照临床试验 痴呆症和他们的照顾者。介入患者将得到以姑息治疗为重点的金字塔式的护理 提供者，其核心是受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)。这些提供者由姑息治疗高级实践护士提供支持 (APN)和医生(MD)。这种创新模式比传统的姑息治疗团队更具普遍性， 它们集中在受过专业培训的MD或APN稀缺而昂贵的资源上。我们的模型是 独特地结合了传统医疗(MD、APN、RN)和以心理社会/社区为重点的提供者(CHW、 Sw)在姑息治疗的背景下提供专门护理，加强与#年资源的联系 患者的当地环境，并对患者/照顾者双方所处的文化背景做出高度反应 做出关于医疗保健的决定。干预患者将得到定期和全面的 社区卫生工作者、护士和社会工作者的评估。总之，该团队将使用这些 评估以创建全面的、个性化的护理计划，以解决患者的身体、心理和社会问题 和功能需求；护理人员的需求；增进对疾病、药物和目标的了解 照顾；并帮助协调服务。PCAH团队将继续与患者/护理者合作 为期12个月的面对面访问(面对面或通过视频)和(至少)每周电话交谈。我们将招收和 随机选择150名晚期痴呆患者及其照顾者(共300名受试者)接受 要么是干预，要么是加强控制(在没有接受痴呆症培训的情况下，从CHW对照顾者进行访问 或姑息治疗)。晚期痴呆症患者(定义为全球恶化程度量表&gt；6) 或者就诊和功能状况不佳的人将有资格参加。我们将确定干预是否： 改善痴呆症患者的症状控制；减少住院人数和住院天数 医院；减少照顾者负担和抑郁，同时提高照顾者对护理的满意度。在……里面 探索性分析我们将确定干预是否降低了成本。我们的模型有可能 改善对数以千计的美国痴呆症患者及其照顾者的护理。

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.