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

年轻型（< 65岁）痴呆，特别是额颞叶痴呆和老年痴呆 阿尔茨海默氏病是一组AD相关痴呆（ADRD），其通常迅速地 进步。这些痴呆症也有很高的发病率和死亡率（平均存活率为100%）。 7年），并提出了极高的生存要求。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治疗的时间较短， 在患者失去决策能力之前，它们发生在典型的 年轻，通常没有与他们的照顾者进行临终交谈。照顾者 这些病人常常在试图发展综合护理时遭受巨大的痛苦 老年痴呆症晚期的治疗计划患者的医疗决策需求， 照顾者与老年痴呆症是复杂的，因为许多人生活在这些 疾病尚未参与关于临终关怀的讨论，许多患者可能不会 在他们失去决策能力之前表达了他们的偏好，照顾者 他们通常不熟悉痴呆症的各个阶段以及每个阶段所需的不同医疗决定， 阶段此外，临床医生和护理人员之间关于医疗护理的讨论通常是不必要的。 不充分;传统的讨论依赖于对假设健康状况的临时口头描述 状态（晚期痴呆）和治疗（心肺复苏术，插管，喂食管）。这种方法 有限，因为这些场景对于护理人员来说很难想象，信息不一致， 语言解释也受到读写障碍的阻碍。为了解决这些问题，我们 为这一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 决策辅助健康成年人做出假设性决策，但不适用于人的照顾者 患上了老年痴呆症本提案的总体目标是收集更多数据 关于护理人员对信息需求的看法，以完善这些工具， 照顾不同阶段的痴呆症患者（轻度，中度，重度），以创建一个 用户手册，以培训基于社区的临床医生开展这方面工作所需的技能， 护理，并进行一项随机对照试验的决策援助（与加强常规护理） 在150名护理人员中。本研究符合RFA-AG-18-030的具体要求：1.炼油一种 现有的干预措施和对该工具的试点测试; 2.阐明了 干预; 3。创建一个用户友好，易于交付的干预，以培训临床护理 社区中的供应商。该建议旨在改善决策， ADRD患者的护理人员，并为一项实用的试验奠定了基础。 通过支持早期（第1阶段）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.