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

项目总结/摘要 路易体痴呆（DLB）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症（ADRD）之一。循证 ADRD的临终关怀模式不足;家庭面临困难的医疗决定， 信息指导。这与DLB特别相关，其中>70%的个体死于痴呆症 自己或失败的繁荣。照顾者描述缺乏知识的期望在生命的最后， 消极的临终体验的重要驱动因素。拟议的研究解决了这一未满足的需求。它还 解决了国家老龄问题研究所的优先事项，以提高护理质量和生活质量的人， ADRD患者及其护理人员。本研究的目的是（1）确定6岁以内死亡的预测因素 （2）确定照顾者措施的变化是否可以预测接近 DLB个体的生命结束，以及（3）确定影响人的生命结束体验质量的因素 与DLB和他们的护理人员。这些目标将通过一项纵向队列研究来实现， 患有至少中度痴呆严重程度的DLB的个体及其照顾者的二人组。戴雅兹将出席 每6个月进行一次研究访视，直至生命结束或3年。根据已发表的临床系列，超过一半的 预期登记的DLB个体在研究过程中死亡。为实现多元化招聘， 这项研究包括一个面对面的队列，其中从路易体痴呆协会招募了二人组 卓越的研究中心和一个新的虚拟队列，其中通过路易体招募二人组 痴呆症协会和研究访问通过电话进行。拥有一个虚拟队列将捕获 DLB患者和未在专科中心接受护理的护理人员的经验。因为 大多数研究措施是双向报告的，面对面和虚拟组的研究相同 测量，除了统一帕金森病评定量表，仅亲自完成。收集 测量将包括人口统计学、DLB特征（如认知、运动、行为、睡眠和 自主症状），健康护理提供者和环境，护理者考虑因素（例如弹性，支持， 悲伤、负担）、生活质量（对于患者和护理者）以及对生命结束体验的满意度。的 护理者将在患有DLB的人死亡后3个月完成最终研究访视以评估悲伤， 恢复和生命结束体验的质量。通过跟踪二人组的生命和死亡的结束 DLB患者和护理人员的初始丧亲期，研究将确定DLB特异性 生命最后6个月的预测因素、识别生命最后6个月的护理人员指标的变化，以及 影响生命体验质量的因素。这些结果将告知结束的内容和时间- 在DLB的生命咨询，帮助建立生命终了护理的质量指标，并确定领域， 干预措施可能会改善DLB患者及其护理人员的临终体验。

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.