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.

项目总结/摘要 路易体痴呆症（Lewy Body Dementia，LBD）是第二种最常见的退行性痴呆症， 在美国，有100万人，绝大多数患有LBD（PLBD）的人都得到了照顾。 家庭照顾者。LBD照顾者压力：1）超过非LBD痴呆照顾者; 2）照顾者压力 身体和精神健康;和3）独立增加PLBD住院治疗的风险， 制度化。LBD的进展是复杂的运动，认知， 神经精神衰退，并不时出现福尔斯、感染、脱水和神经精神症状 导致急性医疗保健利用。虽然家庭照顾者的独特地位，以确定和管理 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 知识、技能、信心、资源和支持。NIA认识到在加强国际合作方面存在差距， 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， 内容、机制和提供方法。基于我们团队的招募 成功和以前的工作影响照顾者应变和PLBD生活质量，拟议的研究地址 这些差距使用我们成功试点，同侪导师提供的教育干预，为LBD照顾者 （PERSEVERE）。该研究旨在1）量化PERSEVERE对护理人员知识，态度， 掌握和应变; 2）确定决定实施保真度的干预和指导因素;以及3） 测试PERSEVERE对PLBD生活质量和医疗保健利用的影响。这些目标将是 在NIH行为模型阶段II（疗效）国家，随机，注意力控制，12周 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， 帕金森基金会，戴维斯菲尼基金会和LBD护理顾问。我们将匹配护理人员， 干预组配备了一名受过训练同伴指导员，他将通过一个模块化的、实用的、以理论为基础的 课程涵盖LBD知识和社会支持主题。处于注意力控制状态的护理人员将 每周只接收教育材料的精选链接。我们将确定立即和延迟干预 影响，包括12周时照顾者压力的介质，以及9周时照顾者压力和PLBD结果 个月将每两周评估一次PLBD医疗保健利用率和实施保真度。的焦点小组 导师和与学员的访谈将进一步确定预测的干预和导师特定因素 忠诚度、学员成果和保留率。远程招聘、指导和评估整合了 制定社区参与战略，确保最大限度地获得并纳入代表性不足的照顾者 组研究结果将阐明在何种程度上利用以前的LBD护理人员作为专家干预者 可以改善当前护理人员的结果，进而改善PLBD的结果。这些结果将为未来的适应提供信息 并将此模型传播给其他痴呆症护理人员。