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.

项目摘要/摘要 刘易体内痴呆（LBD）是退化性痴呆的第二大最常见形式，影响至少2.4 美国的百万人民和绝大多数LBD（PLBD）的人都受到照顾 家庭护理人员。 LBD护理人员菌株：1）超过非LBD痴呆症护理人员； 2）使护理人员恶化 身心健康； 3）独立增加了PLBD住院的风险和 制度化。 LBD的进展使运动，认知和认知的协同作用变得复杂 神经精神病学的下降，并因跌倒，感染，脱水和神经精神症状而刺激 导致急性医疗保健利用。尽管家庭护理人员在识别和管理方面是独特的 这些挑战可能避免急诊室就诊并减少发病率，许多看护人缺乏 知识，技能，信心，资源和支持。 NIA认识到增强的差距 痴呆症护理人员的知识和技能以及了解最佳干预结构的关键需求， 护理人员干预措施的内容，机制和交付方法。在我们团队的招聘基础上建立 拟议的研究解决了成功和先前影响护理人员压力和PLBD生活质量的工作 这些差距使用我们成功试用，同行精神促进的LBD护理人员的教育干预措施 （持久）。该研究的目的是1）量化毅力对照顾者知识，参加者的影响 精通和压力； 2）确定决定实施忠诚的干预和心理因素； 3） 测试持久性对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II期（功效）国家，随机，注意力控制，12周中完成 在502磅LBD护理人员中与Lewy身体痴呆协会合作的持久性审判 帕金森基金会，戴维斯·菲尼基金会和LBD护理人员顾问。我们将与照顾者相匹配 干预臂与受过训练的同行导师，他们将通过模块化，实用，基于理论的指导 涵盖LBD知识和社会支持主题的课程。注意力控制条件下的护理人员将 仅接收每周的策划链接，仅接收到教育材料的链接。我们将立即确定并延迟干预 效果，包括十二周的护理人员菌株的介体，以及九个时期的护理人员菌株和PLBD结果 月份。 PLBD医疗保健利用和实施保真度将每两周评估。焦点小组与 导师和对Menetes的访谈将进一步定义干预措施和特定于MENET的因素预测 忠诚，指导和保留。远程招聘，指导和评估包括 社区参与策略，以确保最大程度的可及性并包括代表性不足的护理人员 组。研究结果将阐明利用以前的LBD护理人员为专家干预主义者的程度 可以改善当前的护理人员结果，进而改善PLBD结果。这些结果将告知未来的适应 并将此模型传播给其他痴呆症护理人员。