Diversifying and Strengthening Dementia Palliative Care Clinical Trials

项目摘要/摘要 阿尔茨海默病(AD)和AD相关痴呆(AD/ADRD)是进行性的、使人衰弱的和 给个人和家庭带来巨大痛苦的绝症。痴呆症是第六种 美国头号死因；三分之一的老年人死于痴呆症候群。 令人痛苦的症状--呼吸急促、疼痛、神经精神症状和进食问题， 是常见的，并随着疾病的发展而恶化。随着护理环境之间的过渡增加 AD/ADRD的进展，往往导致协调不力和零散的护理。家庭照顾者 在疾病的所有阶段提供非凡的情感和实际支持，导致高 照顾者压力、抑郁、身体疾病和失业的比率。姑息治疗寻求 通过解决患者和照顾者的痛苦，管理 症状，明确护理目标，使目标与偏好一致。虽然在许多情况下， 姑息治疗与一系列有益的结果相关，包括质量的提高 患者和照顾者满意度的提高，以及成本的节省，这些结果都是未曾见过的 始终如一地在ADRD。事实上，缺乏证据来指导临床医生提供高质量的 ADRD中的姑息治疗。这个应用程序的总体目标是改进证据基础 通过识别和提高痴呆症和姑息治疗的痴呆症姑息治疗干预 研究人员进行了严格的临床试验，重点是改善人们的生活质量 痴呆症患者和他们的护理伙伴。利用我们对研究人员进行姑息治疗培训的经验 护理临床试验，并利用我们强大的痴呆症姑息护理研究人员网络，我们将 寻求a)确定在姑息治疗、老年病学和临床神经科学方面有前途的不同研究人员 并为进一步培训设计、资金、行为、监测/监督提供机会， 道德表现，以及ADRD姑息治疗临床试验的报告；b)加强 严谨、精心设计的ADRD-PC临床试验，使研究人员在 根据NIH阶段模型进行ADRD-PC临床试验，包括干预开发， 社区参与的研究和实施科学；c)促进持续的职业生涯 通过支持参与者在为期一周的面对面培训计划之前、期间和之后的发展； 和d)为#年的临床试验人员创建协作和共享教育资源的网络 痴呆症姑息治疗。

Project Summary/Abstract Alzheimer’s disease (AD) and AD-related dementias (AD/ADRD) are progressive, debilitating, and terminal illnesses1 that cause significant suffering to individuals and families. Dementia is the sixth leading cause of death in the United States; 1 in 3 older adults die with a dementia syndrome. Distressing symptoms -- shortness of breath, pain, neuropsychiatric symptoms, and feeding problems, are common, and worsen over the disease trajectory. Transitions between care settings increase as AD/ADRD progresses, often resulting in poorly coordinated and fragmented care. Family caregivers provide extraordinary emotional and practical support through all stages of illness, resulting in high rates of caregiver strain, depression, physical illness, and loss of employment. Palliative care seeks to improve quality of life and reduce suffering by addressing patient and caregiver distress, managing symptoms, clarifying goals of care and aligning goals with preferences. While in many conditions, palliative care has been associated with a wide array of beneficial outcomes including improved quality of life, increased patient and caregiver satisfaction, and cost saving, these outcomes have not been seen consistently in ADRD. In fact, there is a dearth of evidence to guide clinicians in providing high-quality palliative care in ADRD. The overall objective of this application is to improve the evidence base for dementia palliative care interventions by identifying and upskilling dementia and palliative care investigators in the conduct of rigorous clinical trials focused on improving quality of life for persons living with dementia and their care partners. Using our experience of training researchers in palliative care clinical trials and leveraging our strong network of dementia palliative care investigators, we will seek to a) Identify promising diverse investigators in palliative care, geriatrics and clinical neurosciences and provide the opportunity for further training in the design, funding, conduct, monitoring/oversight, ethical performance, and reporting of ADRD palliative care clinical trials; b) Enhance the pipeline of rigorous, well designed ADRD-PC clinical trials by equipping investigators with a strong foundation in the conduct of ADRD-PC clinical trials based on the NIH Stage Model, including intervention development, community-engaged research and implementation science; c) Promote ongoing professional career development by supporting participants before, during an after a week-long in-person training program; and d) Create a network for collaboration and sharing of educational resources for clinical trialists in dementia palliative care.