LEADing End-of-Life Dementia Care Conversations

项目摘要/摘要 高级保健计划(ACP)是允许个人表达其未来保健价值的过程 和喜好，这样这些愿望就可以在他们丧失行为能力和无法实现的情况下实现 参与自己的医疗保健决策。在阿尔茨海默病和相关痴呆症的情况下 痴呆症(ADRD)患者(护理接受者)几乎不可避免地在临终时丧失决策能力 随着时间的推移，随着时间的推移，认知功能会逐渐下降，这是生命的一部分。关爱 痴呆症患者的伴侣，最常见的是家庭成员，如配偶/伴侣和成年子女 因此，负责代表患有ADRD的护理接受者做出生命终结决定。这些关怀 伴侣并不总是很好地了解护理接受者的临终价值观和偏好，因此 可能对自己在生命末期作出关于护理和治疗的决定的能力没有信心，结果 在不必要的、徒劳的和经常是不必要的医疗和干预中。通常情况下，家庭不会 想要参与这些具有挑战性的对话并等待太长时间，因此患有ADRD的护理接受者不会 Long具有参与高级护理计划过程的决策能力。我们开发了“主演” 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风险和有早期认知障碍的人以一个 关爱伙伴。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，将铅指南与有关拥有的重要性的教育材料相结合 与其他家庭成员讨论、记录(高级指令)和分享ACP愿望 和医疗保健提供者。该提案概述了一项混合方法研究，我们的目标是：1)评估 铅干预的可用性、可接受性、可行性和初步效果， 专注于痴呆症的基于网络的工具，可用于促进60个不同社区的ACP进程- 由处于ADRD临床前或早期阶段的人及其护理伙伴组成的居住对，2)评估 领导干预对决策自信、人际关系质量、主观幸福感的初步效应 在护理接受者和护理伙伴中的存在和焦虑，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)作为 与铅干预期间观察到的变化相关的主要因素。这项研究的结果是 有可能指导和加速实施社区和保健方面的牵头干预措施 实践，其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.