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

项目摘要 进行性认知能力下降是痴呆症的标志，最终导致无法做出 医疗决策。因此，照顾者在临终关怀中发挥着不可避免的核心作用。然而， 少数阿尔茨海默病和相关痴呆症（ADRD; 22-39%）患者参与预先护理 计划（ACP）或与其护理人员讨论EOL护理愿望。很少有干预措施旨在增加 参与ACP和完成ADRD患者的预先指令已经开发，甚至 更少的包括护理者和ADRD患者在丧失决策能力之前。的 拟议的研究旨在开发和试点测试一种基于沟通的干预措施，以改善ADRD患者 和护理人员对ACP的准备和参与，完成预先指示，以及了解 疾病轨迹根据研究团队在患者-护理者配对中ACP和EOL护理方面的既往工作获得信息 以及对轻度认知障碍和痴呆症患者及其照顾者的干预措施， 本研究的目的是：（1）为ADRD患者和照顾者制定一种基于沟通的干预措施， 包括理论上的沟通策略（例如，承认，验证恐惧）和 遇险管理技术（例如，深呼吸，肌肉放松）;（2）评估可行性， 干预的可接受性;（3）测试干预对ADRD患者的初步疗效， 护理人员对ACP的准备和参与，完成预先指示，以及了解 疾病轨迹（主要结局）以及PWD医疗保健价值观的一致性， ACP需求、心理困扰、沟通质量和护理者负担（次要结局）。到 为了实现这些目标，我们将收集患者及其护理人员（n=10对）的反馈，以及临床和 研究专家（n=10）调整和完善干预措施。接下来，我们将对干预措施进行试点测试， 开放性试验，n=30名患者-护理人员配对，并评估基线、干预后和3个月时的结局 个月后，以确定干预的可行性，可接受性和初步疗效， 和次要结果。这些结果将为未来的NIH R 01应用提供信息，以进行大规模的 干预效果的随机临床试验。基于已建立的抑制性学习理论， 社会认知加工，本研究采取了新的方法整合沟通， 痛苦管理技术，以提高ADRD患者和护理人员讨论困难EOL的能力 主题，同时管理与这些主题相关的困扰。预计这些结果将提供一个 一项研究计划的坚实基础，重点是在失去决定之前纳入ADRD患者- 将能力纳入干预措施，作为改进非加太国家参与的新颖和创新方式， 目标一致的护理率，并减少无效的，积极的EOL护理的接收。

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.