LEADing End-of-Life Dementia Care Conversations

项目总结/摘要 预先护理计划（ACP）是允许个人表达其未来医疗保健价值的过程 和偏好，以便在他们丧失能力和无法 参与自己的医疗保健决策。在阿尔茨海默氏症和相关痴呆症的情况下， （ADRD），即痴呆症患者（护理接受者），几乎不可避免地在最后失去决策能力。 随着时间的推移，随着疾病的发展，认知功能会逐渐下降。的关怀 痴呆症患者的伴侣，通常是家庭成员，如配偶/伴侣和成年子女， 因此，其任务是代表患有ADRD的护理接受者做出临终决定。这些护理 合作伙伴并不总是很好地了解照顾接受者的生命结束的价值观和偏好，因此， 可能对自己在生命结束时做出有关护理和治疗的决定的能力没有信心， 不必要的，徒劳的，往往是不必要的医疗和干预。通常情况下，家庭并不 我想参与这些具有挑战性的对话，等待太久，因此，ADRD的护理接受者没有 有较长的决策能力参与预先护理规划过程。我们开发了“The Lead 指南”（早期阿尔茨海默氏症和痴呆症的生活规划），作为帮助具有临床前意识的人的工具 ADRD风险和早期认知障碍患者开始这些重要的对话， 护理伙伴在国家阿尔茨海默氏症协会的资助下，我们已经创建了一个初步的互动 铅干预，结合铅指南与教育材料的重要性， 与其他家庭成员讨论、记录（预先指示）和分享ACP愿望 和卫生保健提供者。该提案概述了一项混合方法的研究，我们的目标是：1）评估 LEAD干预作为自我管理的可用性、可接受性、可行性和初始疗效， 以痴呆症为重点的网络工具，可用于促进60个不同社区的ACP进程， 由临床前或早期ADRD患者及其护理伙伴组成的居住对，2）评估 LEAD干预对决策信心、关系质量、主观幸福感、 被照顾者和照顾伙伴的存在和焦虑，以及3）检查ACP的过程 一致性（对护理接受者关于EOL护理的价值观和偏好的共同理解） 与LEAD干预期间观察到的变化相关的主要因素。这项研究的结果表明， 有可能指导和加速实施社区和卫生保健的铅干预措施 实践中，需要一个以痴呆症为重点的ACP过程。

PROJECT SUMMARY/ABSTRACT Advance care planning (ACP) is the process that allows individuals to express their future health care values and preferences, so that these wishes can be enacted in the event that they become incapacitated and unable to participate in their own health care decisions. In the case of Alzheimer’s disease and related dementias (ADRD), the person with dementia (care recipient), almost inevitably loses decisional capacity toward the end of life, given the progressive decline in cognitive functioning that accompanies the disease over time. The care partners to persons with dementia, most often family members such as spouse/partners and adult children, are therefore tasked with making end-of-life decisions on behalf of the care recipient with ADRD. These care partners are not always well-informed of the care recipient’s end-of-life values and preferences, and therefore may not feel confident in their ability to make decisions regarding care and treatment at the end of life, resulting in unnecessary, futile, and often unwanted medical treatments and interventions. Oftentimes, families do not want to engage in these challenging conversations and wait too long, whereby the care recipient with ADRD no longer has decisional ability to participate in the advance care planning process. We developed “The LEAD Guide” (Life-Planning in Early Alzheimer’s and Dementia), as a tool to help persons with preclinical awareness of ADRD risk and those with early-stage cognitive impairment to begin these important conversations with a care partner. With funding from the National Alzheimer’s Association, we have created a preliminary interactive LEAD Intervention that combines the LEAD Guide with educational materials about the importance of having conversations about, documenting (advance directive), and sharing ACP wishes with other family members and health care providers. This proposal outlines a mixed-method research study where we aim to: 1) evaluate the usability, accepability, feasability, and initial efficacy of the LEAD Intervention as a self-administered, dementia-focused web-based tool that can be used to facilitate the ACP process for 60 diverse community- dwelling pairs consisting of persons in the preclinical or early stage of ADRD and their care partner, 2) assess the initial efficacy of the LEAD Intervention on decision-making confidence, relationship quality, subjective well- being, and anxiety in both the care recipient and care partner, and 3) examine if the process of ACP congruence (shared understanding of the care recipients’ values and preferences regarding EOL care) as the primary factor related to changes observed during the LEAD intervention. Results from this study have the potential to guide and accelerate the implementation of the LEAD Intervention to community and health care practice, where a dementia-focused ACP process is needed.