PERSEVERE in Lewy Body Dementia: A Randomized, Controlled Trial of Peer Mentor Support and Caregiver Education

坚持治疗路易体痴呆症：同伴导师支持和看护者教育的随机对照试验

• 批准号: 10740652
• 负责人: Jori Erin Fleisher
• 金额: $ 71.57万
• 依托单位: RUSH UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-08-15 至 2028-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10740652
• 关键词: Accident and Emergency department; Acute; Address; Adoption; Affect; Alzheimer' s Disease; Attention; Attitude; Behavioral Model; Caregiver research; Caregivers; Characteristics; Cognitive; Data; Dehydration; Dementia; Dementia caregivers; Disease; Education; Educational Curriculum; Educational Intervention; Educational Materials; Electronic Mail; Emergency department visit; Ensure; Family Caregiver; Focus Groups; Foundations; Funding; Future; Goals; Health; Hospitalization; Hospitals; Infection; Institutionalization; Institutionalized Persons; Intervention; Intervention Studies; Interview; Knowledge; Lewy Body Dementia; Link; Maintenance; Malignant Neoplasms; Mediator; Mental Health; Mentors; Methods; Modeling; Morbidity - disease rate; Motor; Neurobehavioral Manifestations; Outcome; Parkinson Disease; Patient-Focused Outcomes; Patients; Personal Satisfaction; Persons; Pilot Projects; Positioning Attribute; Predictive Factor; Quality of life; Randomized; Randomized, Controlled Trials; Reach, Effectiveness, Adoption, Implementation, and Maintenance; Reporting; Resources; Risk; Sample Size; Social support; Structure; Symptoms; Testing; Time; Training; United States National Institutes of Health; Visit; Work; attentional control; care recipients; caregiver education; caregiver interventions; caregiver strain; community engagement; dementia care; design; experience; falls; family support; health care service utilization; implementation fidelity; improved; intervention effect; mortality; motor symptom; neuropsychiatric symptom; neuropsychiatry; novel; peer coaching; peer support; physical conditioning; programs; psychosocial; recruit; satisfaction; skills; success; theories; treatment arm; treatment as usual; week trial

PROJECT SUMMARY/ABSTRACT Lewy Body Dementia (LBD) is the second most common form of degenerative dementia, affecting at least 2.4 million people in the US, and the overwhelming majority of persons living with LBD (PLBD) are cared for by family caregivers. LBD caregiver strain: 1) exceeds that of non-LBD dementia caregivers; 2) worsens caregiver physical and mental health; and 3) independently increases the risk of PLBD hospitalization and institutionalization. LBD progression is complicated by the synergistic effects of motor, cognitive, and neuropsychiatric decline, and is punctuated by falls, infections, dehydration, and neuropsychiatric symptoms leading to acute healthcare utilization. Although family caregivers are uniquely positioned to identify and manage these challenges, which may avert emergency department visits and reduce morbidity, many caregivers lack the knowledge, skills, confidence, resources, and support to do so. NIA recognizes the gap in enhancing the knowledge and skills of dementia caregivers and the critical need to understand optimal intervention structure, content, mechanisms, and delivery methods for caregiver interventions. Building on our team’s recruitment successes and prior work impacting caregiver strain and PLBD quality of life, the proposed study addresses these gaps using our successfully piloted, peer mentor-delivered educational intervention for LBD caregivers (PERSEVERE). The study aims to 1) quantify the impact of PERSEVERE on caregiver knowledge, attitudes, mastery, and strain; 2) identify the intervention and mentor factors determining implementation fidelity; and 3) test the effects of PERSEVERE on PLBD quality of life and healthcare utilization. These aims will be accomplished in an NIH Behavioral Model Stage II (efficacy) national, randomized, attention-controlled, 12-week trial of PERSEVERE in 502 LBD caregivers in partnership with the Lewy Body Dementia Association, Parkinson’s Foundation, Davis Phinney Foundation, and LBD Caregiver Advisors. We will match caregivers in the intervention arm with a trained peer mentor who will coach them through a modular, practical, theory-based curriculum covering LBD knowledge and social support topics. Caregivers in the attention control condition will receive weekly, curated links to educational materials only. We will identify immediate and delayed intervention effects, including mediators of caregiver strain at twelve weeks, and caregiver strain and PLBD outcomes at nine months. PLBD healthcare utilization and implementation fidelity will be assessed biweekly. Focus groups with mentors and interviews with mentees will further define the intervention- and mentor-specific factors predicting fidelity, mentee outcomes, and retention. Remote recruitment, mentoring, and assessments incorporate community engagement strategies to ensure maximum accessibility and inclusion of underrepresented caregiver groups. Study results will illuminate the extent to which leveraging prior LBD caregivers as expert interventionists can improve current caregiver outcomes, and in turn, PLBD outcomes. These results will inform future adaptation and dissemination of this model for other dementia caregivers.

项目概要/摘要 路易体痴呆 (LBD) 是退行性痴呆的第二常见形式，影响至少 2.4 美国有 100 万人，绝大多数患有 LBD (PLBD) 的人都由 家庭护理人员的 LBD 护理人员压力：1) 超过非 LBD 痴呆护理人员的压力；2) 使护理人员的情况恶化； 身体和心理健康；3) 单独增加 PLBD 住院的风险 由于运动、认知和认知的协同作用，LBD 的进展变得复杂。 神经精神衰退，并伴有跌倒、感染、脱水和神经精神症状 尽管家庭护理人员在识别和管理方面具有独特的地位。 这些挑战可能会避免急诊室就诊并降低发病率，但许多护理人员缺乏 NIA 认识到在增强能力方面存在的差距。 痴呆症护理人员的知识和技能以及了解最佳干预结构的迫切需要， 以我们团队的招募为基础，制定护理人员干预的内容、机制和实施方法。 拟议的研究解决了影响护理人员压力和 PLBD 生活质量的成功和先前的工作 通过我们成功试点的、同伴导师为小黑裙护理人员提供的教育干预措施来弥补这些差距 (PERSEVERE)。该研究旨在 1) 量化 PERSEVERE 对护理人员知识、态度、 掌握程度和压力；2) 确定决定实施保真度的干预因素和指导因素；3) 测试 PERSEVERE 对 PLBD 生活质量和医疗保健利用的影响。 在 NIH 行为模型第二阶段（功效）国家、随机、注意力控制、为期 12 周的研究中取得了成就 与路易体痴呆协会合作，在 502 名 LBD 护理人员中进行了 PERSEVERE 试验， 帕金森氏症基金会、Davis Phinney 基金会和 LBD Caregiver Advisors 我们将在以下地区匹配护理人员。 干预部门配有训练有素的同伴导师，他们将通过模块化、实用、基于理论的方式指导他们 课程涵盖注意力控制状况下的 LBD 知识和社会支持主题。 仅接收每周精选的教育材料链接。我们将确定立即和延迟的干预措施。 影响，包括十二周时照顾者紧张的中介因素，以及九周时照顾者紧张和 PLBD 结果 PLBD 医疗保健利用和实施保真度将每两周进行一次焦点小组评估。 导师和与受训者的访谈将进一步确定干预措施和导师的具体预测因素 忠诚度、学员成果和保留率包括远程招聘、指导和评估。 社区参与战略，以确保最大限度地接触和包容代表性不足的护理人员 研究结果将阐明在多大程度上利用先前的 LBD 护理人员作为专家干预专家。 可以改善当前的护理人员结果，反过来，这些结果将为未来的适应提供信息。 并向其他痴呆症护理人员传播该模型。