Dassel Kara B, Iacob Eli, Utz Rebecca L, Supiano Katherine P, Fuhrmann Hollie
University of Utah, College of Nursing, 10 S. 2000 E., Salt Lake City, UT, USA.
University of Utah, College of Social and Behavioral Sciences, 260 South Central Campus Drive, Salt Lake City, UT, USA.
OBM Integr Compliment Med. 2023;8(1). doi: 10.21926/obm.icm.2301004. Epub 2023 Jan 6.
Due to the insidious progression of Alzheimer's disease and related dementias (ADRD), surrogate decision-makers typically make medical and long-term-care decisions for a care recipient, most often a family care partner. Unfortunately, many care recipient/care partner dyads have failed to engage in advance care planning or have lost the opportunity to do so due to the cognitive decline of the care recipient. To address this need, our team created a validated dementia-focused advance care planning tool known as the LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias). With funding from the National Alzheimer's Association and in consultation with our community advisory board, we developed a preliminary web-based intervention. This intervention integrates the LEAD Guide with self-paced educational modules that lead dyads through conversations and dementia-focused advance care planning processes. In this concept paper, we describe the aims of our funded R01 clinical trial (National Institute on Aging), where we aim to refine our preliminary web-based platform for use in a 5-month mixed-method NIH Stage-1 behavioral intervention. Using a sample of diverse community-based ADRD dyads (n = 60), we aim to: 1) describe the acceptability, usability, and feasibility of the intervention, 2) assess the initial efficacy of the intervention on the primary outcome (decision-making self-efficacy), and secondary outcomes (relationship quality, subjective well-being, anxiety) as perceived by both the care recipient and the care partner, and 3) examine advance care planning congruence as a mechanism of action. The LEAD clinical trial addresses public health challenges by guiding and supporting families through challenging advance care planning conversations, facilitating the transfer of knowledge regarding care preferences and values from the care recipient to the care partner, with the ultimate goal of improving the quality of life for both individuals with ADRD and their care partners.
由于阿尔茨海默病及相关痴呆症（ADRD）的进展隐匿，替代决策者通常会为受照护者做出医疗和长期护理决策，受照护者大多是家庭护理伙伴。不幸的是，许多受照护者/护理伙伴二元组未能参与预先护理计划，或者由于受照护者的认知衰退而失去了这样做的机会。为满足这一需求，我们的团队创建了一种经过验证的、以痴呆症为重点的预先护理计划工具，称为LEAD指南（早期阿尔茨海默病及其他痴呆症的生活规划）。在国家阿尔茨海默病协会的资助下，并与我们的社区咨询委员会协商，我们开发了一种初步的基于网络的干预措施。这种干预措施将LEAD指南与自主学习的教育模块相结合，引导二元组进行对话和以痴呆症为重点的预先护理计划流程。在这篇概念文件中，我们描述了我们获得资助的R01临床试验（美国国立衰老研究所）的目标，我们旨在完善我们初步的基于网络的平台，以用于为期5个月的混合方法国立卫生研究院第一阶段行为干预。我们以多样化的社区ADRD二元组样本（n = 60）为对象，旨在：1）描述该干预措施的可接受性、可用性和可行性；2）评估该干预措施对主要结局（决策自我效能感）以及受照护者和护理伙伴所感知的次要结局（关系质量、主观幸福感、焦虑）的初始疗效；3）将预先护理计划的一致性作为一种作用机制进行研究。LEAD临床试验通过指导和支持家庭进行具有挑战性的预先护理计划对话，促进关于护理偏好和价值观的知识从受照护者向护理伙伴的传递，以应对公共卫生挑战，最终目标是提高ADRD患者及其护理伙伴的生活质量。
