A video intervention to improve decision making in early-onset dementia caregivers

青年起病(65岁)痴呆，特别是额颞部痴呆和青年起病 阿尔茨海默病是一组与AD相关的痴呆(ADRD)，通常迅速 进步的。这些痴呆症的发病率和死亡率也很高(平均存活率为 7年)和异常高的照看要求。这些疾病患者的照顾者 有独特的需求，因为这些痴呆症从诊断到 在患者失去决策能力之前，这种情况发生在典型的 年龄较小，通常没有与照顾者进行临终谈话。照顾者 这些患者经常遭受巨大的痛苦，试图发展一种全面的护理 为痴呆症的晚期制定计划。患者和患者的医疗决策需求 患有青少年痴呆症的照顾者是复杂的，因为许多患有这些疾病的人 疾病还没有参与到关于临终关怀的讨论中，许多患者可能没有 在失去决策能力之前表达了自己的偏好，照顾者是 经常不熟悉痴呆症的不同阶段以及每个阶段所需的不同医疗决定 舞台。此外，临床医生和护理人员之间关于医疗保健的讨论经常 不充分；传统的讨论依赖于对假设健康的临时口头描述 状态(晚期痴呆)和治疗(心肺复苏、插管、喂养管)。这种方法是 有限，因为这些场景对照顾者来说很难想象，信息不一致， 而口头解释也受到识字障碍的阻碍。为了解决这些缺点，我们 已经为这些人群开发了视频决策辅助工具。我们已经证明了这些方法的有效性。 帮助健康的成年人做出假设性决定，但不适用于照顾者 患有老年痴呆症。这项提案的总体目标是收集更多的数据 关于护理人员关于信息需求的观点，以改进这些工具以满足 护理痴呆症患者的不同阶段(轻度、中度、重度)，以创造一个 培训以社区为基础的临床医生的用户手册，了解开展这方面工作所需的技能 护理，并进行一项关于辅助决策的随机对照试验(与增强的普通护理相比) 在150名照顾者中。本研究通过以下几个方面满足RFA-AG-18-030的具体要求：1.提炼出 现有的干预措施和试点测试该工具；2.阐明 干预措施；以及，3.创建用户友好、易于提供的干预措施，以培训临床护理人员 社区中的供应商。这项建议旨在改善对 ADRD患者的护理人员，并为务实的护理试验奠定了基础 通过支持早期(阶段1)行为干预进行干预。

Young-onset (age < 65) dementias, especially the Frontotemporal Dementia and young-onset Alzheimer's disease, are a group of AD related dementias (ADRD) that are often rapidly progressive. These dementias also have a high morbidity and mortality rate (average survival is 7 years) and exceptionally high caregiving demands. Caregivers of patients with these diseases have unique needs since these dementias have a shorter period of time from diagnosis to before patients lose decision-making capacity, and they occur in patients who are typically younger and have usually not had end-of-life conversations with their caregivers. Caregivers of these patients often suffer a great deal of distress attempting to develop a comprehensive care plan for the advanced stages of dementia. Medical decision-making needs for patients and caregivers with young-onset dementia are complex, since many people living with these illnesses have not yet engaged in discussions about end-of-life care, many patients may not have expressed their preferences before they lose decision-making capacity, and caregivers are often unfamiliar with the stages of dementia and the different medical decisions required in each stage. Furthermore, discussions between clinicians and caregivers about medical care is often inadequate; traditional discussions rely on ad hoc verbal descriptions of hypothetical health states (advanced dementia) and treatments (CPR, intubation, feeding tubes). This approach is limited because these scenarios are hard for caregivers to envision, information is inconsistent, and verbal explanations are hindered by literacy barriers. To address these shortcomings, we have developed video decision aids for this population. We have shown the efficacy of these decision aids in healthy adults making hypothetical decisions, but not in caregivers of people with young-onset dementia. The overall objectives of this proposal is to collect additional data on caregiver views regarding informational needs, to refine these tools for the needs of caregivers of patients in the different stages of dementia (mild, moderate, severe), to create a user-manual to train community-based clinicians on the skills required to carry out this facet of care, and to conduct a randomized controlled trial of the decision aid (vs. enhanced usual care) in 150 caregivers. This study meets the specific requests of RFA-AG-18-030 by: 1. refining an existing intervention and pilot-testing the tool; 2. elucidating the underlying principle of the intervention; and, 3. creating a user-friendly, easily delivered intervention to train clinical care providers in the community. This proposal is designed to improve decision making for caregivers of patients with ADRD and lays the groundwork for a pragmatic trial of a caregiving intervention by supporting an early-Stage (Stage 1) behavioral intervention.