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

项目总结 进行性认知衰退是痴呆症的标志，最终导致无法做出 医疗保健决策。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， 很少有阿尔茨海默病和相关痴呆症患者(ADRD；22-39%)进行提前护理 计划(ACP)或与其照顾者讨论EOL护理意愿。几乎没有什么干预措施旨在增加 在ADRD患者中参与ACP和完成预先指令已经被开发，甚至 较少包括在丧失决策能力之前的照顾者和ADRD患者。这个 拟议的研究旨在开发和试点基于沟通的干预措施来改善ADRD患者 和护理者为ACP做好准备和参与，完成先行指令，并了解 疾病轨迹。根据研究小组在ACP和患者-照顾者双方的EOL护理方面的先前工作提供信息 以及对轻度认知障碍和痴呆症患者及其照顾者的干预，目标是 本研究旨在：(1)为ADRD患者和照顾者开发基于沟通的干预措施 包括理论上有根据的沟通策略(例如，承认、确认恐惧)和 痛苦处理技术(如深呼吸、肌肉放松)；(2)评估可行性和 干预措施的可接受性；及(3)检验干预措施对ADRD患者的初步疗效 照顾者对ACP的准备和参与、预先指示的完成以及对 疾病轨迹(主要结果)以及与残障人士的医疗价值的一致性，感知 对ACP的需求、心理困扰、沟通质量和照顾者负担(次要结果)。至 为了达到这些目标，我们将收集患者和他们的照顾者(n=10个二元体)以及临床和 研究专家(n=10)调整和完善干预措施。接下来，我们将通过一种 N=30名患者-照顾者二元组的开放试验，并评估基线、干预后和三个月的结果 几个月后确定干预的可行性、可接受性和初步疗效 和次要结果。这些结果将为未来NIH R01应用程序进行大规模 干预效果的随机临床试验。基于已建立的抑制性学习理论和 社会认知加工，本研究采用了沟通与认知加工相结合的新方法 提高ADRD患者和照顾者讨论困难EOL能力的痛苦管理技术 主题，同时管理与这些主题相关的痛苦。预计这些结果将提供一个 为一项研究计划奠定了坚实的基础，该计划的重点是在决策失败之前纳入ADRD患者- 将能力转化为干预措施，作为改善非加太项目参与度的一种新颖和创新的方式，增加 与目标一致的护理比率，并减少无用的、积极的EOL护理的接受。

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.