Identifying Factors Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences: the PACE-DLB Study

项目摘要/摘要 路易体痴呆是路易体痴呆的一部分，路易体痴呆是第二常见的退行性痴呆 它也是阿尔茨海默病相关痴呆(ADRD)之一。循证的 ADRD的临终关怀模式不足；家庭面临困难的医疗决定，几乎没有 用于指导的信息。这一点对于DLB来说尤其重要，70%的人死于痴呆症 或自身或未能蓬勃发展。照顾者将缺乏对生命末期所期待的知识描述为 是负面临终体验的重要驱动力。拟议的研究解决了这一未得到满足的需求。它还 向国家老龄研究所发表讲话，提高老年患者的护理质量和生活质量 生命末期的ADRDS及其照顾者。这项研究的目的是(1)确定6个以内的死亡预测因素 (2)确定照顾者措施的变化是否可以预测即将到来 以及(3)确定影响个人生命终结体验的因素 以及他们的照顾者。这些目标将通过一项纵向队列研究来实现 至少患有中度痴呆症的DLB患者及其照顾者的二元组。二人组将出席 每6个月进行一次学习访问，直到生命结束或3年。根据已发表的临床系列，超过一半的 在研究过程中，患有DLB的登记个人预计会死亡。为了实现多样化的招聘， 这项研究包括一个面对面的队列，其中从路易体痴呆症协会招募二元体 卓越研究中心和一个新的虚拟队列，其中通过路易体招募二联体 痴呆症协会和研究访问通过电话进行。拥有虚拟队列将捕获 患有DLB的个人和未在专科中心接受护理的照顾者的经历。因为 大多数研究措施是由照顾者报告的，面对面的和虚拟的小组有相同的研究 除了统一的帕金森病评定量表外，其他测量只需亲自完成。收纳 衡量标准将包括人口统计数据、DLB特征(例如认知、运动、行为、睡眠和 自主神经症状)、医疗服务提供者和环境、照顾者考虑因素(例如复原力、支持、 悲伤、负担)、生活质量(对病人和照顾者而言)以及对生命末期经历的满意度。这个 照顾者将在DLB患者死亡3个月后完成最后一次研究访问，以评估悲痛， 康复，以及高质量的临终体验。通过跟随二元体直到生命的尽头和死亡 患有DLB的人和照顾者的最初丧亲时间，这项研究将确定DLB特定的 生命最后6个月的预测指标，确定生命最后6个月的照顾者衡量标准的变化，以及 影响临终体验质量的因素。这些结果将为结束的内容和时间提供信息。 DLB的临终咨询，帮助建立临终关怀的质量指标，并确定以下领域 干预措施可能会改善患有DLB的患者及其照顾者的临终体验。

PROJECT SUMMARY/ABSTRACT Dementia with Lewy bodies (DLB) is part of Lewy body dementia, the 2nd-most-common degenerative dementia in the U.S. It is also one of the Alzheimer’s disease-related dementias (ADRDs). Evidence-based models of end-of-life care for ADRDs are insufficient; families face difficult medical decisions with little information for guidance. This is particularly relevant for DLB, where >70% of individuals die of the dementia itself or failure to thrive. Caregivers describe lack of knowledge of what to expect at the end of life as an important driver of negative end-of-life experiences. The proposed study addresses this unmet need. It also addresses the National Institute on Aging’s priority to improve quality of care and quality of life for persons with ADRDs at the end of life and their caregivers. This study aims to (1) determine the predictors of death within 6 months in individuals with DLB, (2) identify whether a change in caregiver measures can predict approaching end of life of individuals with DLB, and (3) identify factors that affect quality end of life experiences for persons with DLB and their caregivers. These aims will be accomplished through a longitudinal cohort study enrolling dyads of individuals with DLB of at least moderate dementia severity and their caregivers. Dyads will attend study visits every 6 months through the end of life or 3 years. Based on published clinical series, over half of enrolled individuals with DLB are expected to die over the course of the study. To achieve diverse recruitment, the study includes an in-person cohort where dyads are recruited from Lewy Body Dementia Association Research Centers of Excellence and a novel virtual cohort where dyads are recruited through the Lewy Body Dementia Association and study visits are conducted by telephone. Having a virtual cohort will capture the experiences of individuals with DLB and caregivers not receiving care at specialty centers. Because the majority of study measures are caregiver-reported, the in-person and virtual groups have identical study measures, except for the Unified Parkinson Disease Rating Scale, completed only in person. Collected measures will include demographics, DLB characteristics (e.g. cognitive, motor, behavioral, sleep, and autonomic symptoms), health care providers and settings, caregiver considerations (e.g. resilience, support, grief, burden), quality of life (for the patient and caregiver), and satisfaction with end of life experiences. The caregiver will complete a final study visit 3 months after the death of the person with DLB to assess grief, recovery, and quality of the end of life experience. By following dyads through the end of life and death of the person with DLB and the initial bereavement period for the caregiver, the study will identify DLB-specific predictors of the last 6 months of life, changes in caregiver measures that identify the last 6 months of life, and factors which influence quality end of life experiences. These results will inform the content and timing of end- of-life counseling in DLB, help establish quality metrics for end of life care, and identify areas where interventions could potentially improve end of life experiences for individuals with DLB and their caregivers.