A communication-based intervention for early stage dementia patient-caregiver dyads to increase engagement in advance care planning and reduce caregiver burden

针对早期痴呆症患者-护理人员二人组的基于沟通的干预措施，以提高预先护理计划的参与度并减轻护理人员的负担

• 批准号: 10461153
• 负责人: SARA J CZAJA
• 金额: $ 25.64万
• 依托单位: WEILL MEDICAL COLL OF CORNELL UNIV
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-15 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10461153
• 关键词: Address; Advance Care Planning; Advance Directives; Alzheimer' s disease related dementia; Breathing; Caregiver Burden; Caregivers; Caring; Clinical Research; Cognitive; Communication; Decision Making; Dementia; Disease; Distress; Do Not Resuscitate Order; Early Intervention; Enrollment; Ensure; Feedback; Foundations; Fright; Future; Goals; Guidelines; Healthcare; Hospice Care; Impaired cognition; Individual; Intervention; Knowledge; Learning; Life Expectancy; Living Wills; Muscle relaxation phase; Outcome; Patient Care; Patients; Persons; Play; Population; Process; Proxy; Public Health; Quality of Care; Randomized Clinical Trials; Randomized Controlled Trials; Readiness; Relaxation Techniques; Reporting; Research; Role; Techniques; Testing; Time; Treatment Efficacy; United States Centers for Medicare and Medicaid Services; United States National Institutes of Health; Validation; Videoconferencing; acceptability and feasibility; base; caregiver interventions; clinical care; cognitive function; decision-making capacity; dementia care; distress tolerance; end of life; end of life care; health goals; hospitalization rates; improved; innovation; mild cognitive impairment; novel; novel strategies; patient engagement; patient oriented; pilot test; post intervention; preference; primary outcome; programs; psychological distress; secondary outcome; skills; social; standard care; theories; therapy design; work-study

PROJECT SUMMARY The progressive cognitive decline that is the hallmark of dementia results in the eventual inability to make healthcare decisions. As a result, caregivers play an inevitable and central role in end-of-life (EOL) care. Yet, few patients with Alzheimer’s Disease and Related Dementias (ADRD; 22-39%) engage in advance care planning (ACP) or discuss EOL care wishes with their caregivers. Few interventions designed to increase engagement in ACP and completion of advance directives in ADRD patients have been developed and even fewer include both the caregiver and the ADRD patient prior to the loss of decision-making capacity. The proposed study aims to develop, and pilot test a communication-based intervention to improve ADRD patient and caregiver preparedness for and engagement in ACP, completion of advance directives, and knowledge of disease trajectory. Informed by prior work of the study team in ACP and EOL care in patient-caregiver dyads and interventions for persons with mild cognitive impairment and dementia and their caregivers, the goals of this study are to: (1) develop a communication-based intervention for ADRD patients and caregivers that includes theoretically grounded communication strategies (e.g., acknowledgment, validation of fears) and distress management techniques (e.g., deep breathing, muscle relaxation); (2) evaluate the feasibility and acceptability of the intervention; and (3) test the preliminary efficacy of the intervention on ADRD patients’ and caregivers’ preparedness for and engagement in ACP, completion of advance directives, and understanding of disease trajectory (primary outcomes) as well as concordance on the PWD’s healthcare values, perceived need for ACP, psychological distress, communication quality, and caregiver burden (secondary outcomes). To meet these goals, we will collect feedback from patients and their caregivers (n=10 dyads) and clinical and research experts (n=10) to adapt and refine the intervention. Next, we will pilot test the intervention with an open trial of n=30 patient-caregiver dyads and assess outcomes at baseline, post-intervention, and three months later to determine the feasibility, acceptability, and preliminary efficacy of the intervention on primary and secondary outcomes. These results will inform a future NIH R01 application to conduct a large-scale randomized clinical trial of intervention efficacy. Grounded in established theories of inhibitory learning and social-cognitive processing, the present study takes the novel approach of integrating communication and distress management techniques to improve ADRD patients’ and caregivers’ ability to discuss difficult EOL topics while managing the distress associated with these topics. It is expected that these results will provide a strong foundation for a program of research focused on including ADRD patients prior to the loss of decision- making capacity into interventions as a novel and innovative way to improve engagement in ACP, increase rates of goal-concordant care, and reduce receipt of futile, aggressive EOL care.

项目摘要 痴呆症的标志的渐进认知下降导致事件无法实现 医疗保健决定。结果，护理人员在临终（EOL）护理中起着不可避免的核心作用。然而， 很少有阿尔茨海默氏病和相关痴呆症患者（ADRD； 22-39％）参与预先护理 计划（ACP）或与他们的护理人员讨论EOL护理愿望。旨在增加的干预措施很少 已经开发了ADRD患者的ACP并完成预先指令的工作，甚至 在决策能力损失之前，更少的包括护理人员和ADRD患者。这 拟议的研究旨在开发和试点测试基于传播的干预措施以改善ADRD患者 以及护理人员的准备和参与ACP，完成指令的完成以及了解 疾病轨迹。由ACP和EOL护理研究团队的先前工作告知患者保健节奏 以及对轻度认知障碍和痴呆症及其护理人员的干预措施，目标 这项研究是：（1）为ADRD患者和护理人员开发基于交流的干预措施 包括理论上扎根的沟通策略（例如，确认，恐惧验证）和 遇险管理技术（例如，深呼吸，肌肉放松）； （2）评估可行性和 干预的可接受性； （3）测试对ADRD患者的干预效率和 护理人员为ACP的准备和参与，提前指令的完成以及对 疾病轨迹（主要结果）以及对PWD的医疗保健价值观的一致性，感知到了 需要ACP，心理困扰，沟通质量和护理人员Burnen（次要结果）。到 实现这些目标，我们将收集患者及其护理人员（n = 10个二元组）和临床的反馈 研究专家（n = 10）适应和完善干预措施。接下来，我们将通过 基线，干预后和三个 几个月后，以确定干预措施的可行性，可接受性和初步效率 和次要结果。这些结果将为未来的NIH R01申请提供大规模进行的申请 干预效率的随机临床试验。基于确定的抑制性学习理论 社会认知处理，本研究采用了整合沟通和 遇险管理技术，以改善ADRD患者和护理人员讨论困难EOL的能力 主题在管理与这些主题相关的困扰的同时。预计这些结果将提供 在失去决策之前，专注于将ADRD患者包括在内的研究计划的强大基础 - 将干预措施作为一种新颖而创新的方式，以提高ACP参与度，增加 目标符合护理的速度，并减少徒劳的，积极的EOL护理的收到。