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

识别准确预测路易体痴呆症临终的因素并提升临终体验质量：PACE-DLB 研究

• 批准号: 10404687
• 负责人: Melissa Jo Armstrong
• 金额: $ 63.05万
• 依托单位: UNIVERSITY OF FLORIDA
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-15 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10404687
• 关键词: Address; Affect; Age; Alzheimer' s Disease; Alzheimer' s disease related dementia; Area; Behavioral; Behavioral Symptoms; Bereavement; Caregiver Burden; Caregiver well-being; Caregivers; Caring; Centers of Research Excellence; Cessation of life; Characteristics; Child; Climacteric; Clinical; Cognitive; Cohort Studies; Collaborations; Counseling; Data; Data Set; Databases; Dementia; Dementia with Lewy Bodies; Demographic Impact; Discipline of Nursing; Enrollment; Face; Failure to Thrive; Family; Future; Grief reaction; Guidelines; Hallucinations; Health Personnel; Healthcare; Home; Individual; Intervention; Knowledge; Lewy Body Dementia; Life; Life Experience; Location; Longitudinal cohort study; Measures; Medical; Medicare; Mental Depression; Modeling; Motor; Movement Disorder Society Unified Parkinson' s Disease Rating Scale; National Institute on Aging; Outcome; Patients; Persons; Physicians; Pneumonia; Population; Predictive Factor; Provider; Publishing; Quality of Care; Quality of life; Recovery; Reporting; Rural; Self Efficacy; Series; Severities; Signal Transduction; Sleep; Social support; Specialist; Spouses; Symptoms; Telephone; United States; Visit; base; cohort; comorbidity; coping; decubitus ulcer; demographics; end of life; end of life care; evidence base; experience; hospice environment; improved; informal caregiver; medical specialties; neurodegenerative dementia; novel; recruit; residence; resilience; satisfaction; suburb; tool; virtual

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.

项目总结/文摘