UCSF Older Americans Independence Center

摘要/摘要 阿尔茨海默病和相关痴呆综合征的临床病程以进行性认知为标志 衰弱和功能残疾。临终关怀是一种旨在通过以下方式改善残疾的护理模式 优化临终病人及其家人的生活质量。几乎所有关于临终关怀的研究 痴呆症患者，特别是在临终关怀院生活的人，一直将痴呆症作为主要诊断和治疗重点。 直接死因。然而，老年人在生命末期往往有许多并存的疾病。 许多临终关怀登记的人，其临终关怀的指征是痴呆症以外的其他诊断，他们仍然有共同的- 现有的痴呆症。痴呆症与癌症或充血心脏等临终关怀指征并存 失败可能会对护理和结果产生深远的影响。解决国家计划的目标 解决阿尔茨海默氏症问题，以提高护理质量，扩大对照顾者和有老年痴呆症患者的支持 对于痴呆症，我们需要确保为痴呆症患者优化临终生活质量，无论是 痴呆症是死亡的主要原因，或与另一种生命终结状况共存。 加州大学旧金山分校老年美国人独立中心(OAIC)的首要目标是防止晚年 在可能的情况下改善残疾老年人的生活质量，在没有预防的情况下提高老年人的生活质量 可能(改进)。拟议的行政补充文件专门将这一目标扩展到弱势群体。 患有阿尔茨海默病和相关痴呆症的老年人。这项建议符合概念上的 指导加州大学旧金山分校OAIC的框架，该框架认为照顾残疾和痴呆症老年人必须 考虑更广泛的医学和社会背景。我们将利用OAIC数据分析核心的专业知识 以及具有全国代表性的国民健康老龄化和趋势研究(NHATS)，以揭示 未完成研究的人群：临终关怀登记患有共病痴呆症的患者。 我们的建议旨在量化和比较死于合并症的老年人的特征和结果 与两组相比，在接受临终关怀的另一种情况下患有痴呆症：a) 最初被诊断为痴呆症的临终关怀接受者和B)既没有原发痴呆症的临终关怀死者 诊断为痴呆症或共病痴呆症(如无痴呆症)。来自ADRD补编的数据将 为引人注目的NIA ADRD R01应用程序提供关键的初步数据，该应用程序使用NHATS检查终端 在临终关怀中死亡的痴呆症患者的生活经历和费用。我们的发现将对我们有所帮助 确定改善临终关怀的机会，并为因痴呆症死亡或死于痴呆症的临终关怀死者制定政策。 此类研究与NIA 2020年的战略方向保持一致，以支持改善我们 了解ADRD(目标D)，并为干预措施的制定和政策决定(目标E)提供信息。

ABSTRACT/SUMMARY The clinical course of Alzheimer's disease and related dementia syndromes is marked by progressive cognitive decline and functional disability. At end-of-life, hospice is a model of care that aims to ameliorate disability by optimizing quality of life for people who are dying and their families. Virtually all research on end of life care of persons living with dementia, especially in hospice, has focused on the dementia as a principal diagnosis and proximate cause of death. Yet older persons at the end of life frequently have many co-existing conditions. Many hospice enrollees whose indication for hospice care is a diagnosis other than dementia still have co- existing dementia. The co-existence of dementia with hospice indications such as cancer or congestive heart failure is likely to have profound implications for care and outcomes. To address the goals of the National Plan to Address Alzheimer's Disease to enhance care quality and expand supports for caregivers and those with dementia, we need to ensure that end-of-life quality of life is optimized for people with dementia, whether dementia is the primary cause of death, or co-exists with another end of life condition. The overarching goal of the UCSF Older Americans Independence Center (OAIC) is to prevent late-life disability when possible, and to improve the quality of life of older people with disability when prevention is not possible (amelioration). The proposed administrative supplement extends this goal specifically to vulnerable older adults who have Alzheimer's disease and related dementias. This proposal fits within the conceptual framework that guides the UCSF OAIC, which holds that care for elders with disability and dementia must consider the wider medical and social context. We will leverage the expertise of the OAIC Data Analysis Core and the nationally representative National Health Aging and Trends Study (NHATS) to shed light on an understudied population: hospice enrollees with comorbid dementia. Our proposal aims to quantify and compare characteristics and outcomes of older adults dying with comorbid dementia while receiving hospice care for another condition contextualized in comparison to two groups: A) hospice recipients with a primary diagnosis of dementia and B) hospice decedents with neither a primary diagnosis of dementia nor comorbid dementia (e.g. without dementia). Data from the ADRD supplement would provide critical preliminary data for a compelling NIA ADRD R01 application that uses NHATS to examine end- of-life experiences and costs for persons dying in hospice with comorbid dementia. Our findings will help identify opportunities to improve hospice care and policy for hospice decedents dying with or from dementia. Such research aligns with NIA strategic directions for 2020 to support research that improves our understanding of ADRD (goal D) and to inform intervention development and policy decisions (goal E).