LEADing End-of-Life Dementia Care Conversations

引领临终痴呆症护理对话

• 批准号: 10370764
• 负责人: KARA Bottiggi Dassel
• 金额: $ 73.25万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-06-01 至 2027-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10370764
• 关键词: Address; Adult; Adult Children; Advance Care Planning; Advance Directives; Alzheimer' s Disease; Alzheimer' s disease related dementia; Anxiety; Awareness; Behavior Therapy; Caring; Child; Cognitive; Communication; Communities; Community Healthcare; Consultations; Decision Making; Dementia; Deterioration; Discourse analysis; Disease; Documentation; Educational Materials; Event; Extended Family; Family; Family health status; Family member; Funding; Future; Geographic Locations; Goals; Health Personnel; Healthcare; Impaired cognition; Individual; Intervention; Knowledge; Learning Module; Left; Life; Long-Term Care; Medical; Methods; Online Systems; Outcome Assessment; Outcome Measure; Parents; Participant; Personal Satisfaction; Persons; Population; Process; Public Health; Quality of life; Recommendation; Research Methodology; Resources; Safety; Sampling; Self Administration; Self Efficacy; Spouses; Surveys; Time; United States National Institutes of Health; Value of Life; base; care preference; care recipients; cognitive function; dementia care; dementia risk; design; end of life; family support; health care availability; health care settings; hospital readmission; improved; longitudinal analysis; population based; pre-clinical; preference; primary outcome; process evaluation; research study; secondary outcome; surrogate decision maker; tool; usability; web-based intervention; web-based tool

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.

项目摘要/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，以便在这些愿望变得无能为力并且无法 参加自己的医疗保健决定。就阿尔茨海默氏病和相关痴呆症而言 （ADRD），患有痴呆症的人（护理接收者），几乎不可避免地失去了决策能力。 鉴于认知功能的逐步下降，随着时间的流逝，涉及该疾病的认知功能逐渐下降。护理 痴呆症患者的伴侣，通常是配偶/伴侣和成年子女等家庭成员 因此，任务是代表ADRD的护理接收者做出终身决策。这些关心 合作伙伴并不总是对护理接收者的临终值和偏好的了解，因此 可能对他们在生命结束时做出有关护理和治疗决策的能力没有信心，从而 在不必要的，徒劳的且经常不必要的医疗治疗和干预措施中。通常，家庭没有 想要进行这些挑战对话并等待太久，因此，ADRD NO的护理接收者 更长的时间具有决策能力参加预先护理计划过程。我们开发了“领先者 指南”（在阿尔茨海默氏症早期和痴呆症中生命计划），作为帮助临床前意识的人的工具 ADRD风险以及患有早期认知障碍的人，以这些重要的对话开始 护理伙伴。在国家阿尔茨海默氏症协会的资助下，我们创建了一个初步互动 将铅指南与教育材料相结合的主要干预措施 与其他家庭成员的对话，记录（预先指令）和分享ACP祝福 和医疗保健提供者。该建议概述了一项混合方法研究，我们的目的是：1）评估 铅干预的可用性，可用性，可行性和初始效率，作为自我管理的， 以痴呆为中心的基于痴呆的基于网络的工具，可用于促进60名潜水员社区的ACP流程 - 在ADRD的临床前或早期阶段及其护理合作伙伴的居住对，2）评估 铅干预对决策信心，关系质量，主观良好的初始效率 在护理接收者和护理伙伴中的存在和动画，以及3）检查ACP的过程是否是否 一致性（对护理接收者对EOL护理的价值观和偏好的共识） 与铅干预过程中观察到的变化有关的主要因素。这项研究的结果具有 潜力指导和加速对社区和卫生保健的领先干预的实施 练习，需要以痴呆症为重点的ACP过程。