UCSF Older Americans Independence Center

加州大学旧金山分校美国老年人独立中心

• 批准号: 10119175
• 负责人: KENNETH E. COVINSKY
• 金额: $ 40.32万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-07-15 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10119175
• 关键词: Address; Administrative Supplement; Administrator; Affect; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Behavior; Caregiver support; Caregivers; Caring; Cause of Death; Cessation of life; Characteristics; Clinical; Communities; Congestive Heart Failure; Data; Data Analyses; Dementia; Diagnosis; Disabled Persons; Disease; Education; Elderly; Eligibility Determination; Enrollment; Ensure; Epidemiology; Ethics; Ethnic Origin; Exhibits; Family; Funding; Goals; Health; Health Policy; Health Services Research; Heart failure; Hospice Care; Illness impact; Impaired cognition; Investigation; Knowledge; Lead; Length of Stay; Life; Life Experience; Light; Link; Literature; Long-Term Care for Elderly; Malignant Neoplasms; Medical; Medicare claim; Modeling; National Institute on Aging; Outcome; Palliative Medicine; Persons; Physicians; Policies; Population; Population Characteristics; Prevalence; Prevention; Quality of Care; Quality of life; Race; Research; Research Support; Social Environment; Syndrome; Terminal Disease; United States; Work; advanced dementia; burnout; care outcomes; cohort; combat; comorbidity; cost; dementia care; development policy; disability; end of life; end of life care; exhaustion; falls; functional disability; hospice environment; improved; multidisciplinary; palliation; person centered; prevent; therapy design; therapy development; trend; virtual

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).

摘要/总结 阿尔茨海默病和相关痴呆综合征的临床过程以进行性认知障碍为标志， 衰退和功能性残疾。临终关怀是一种护理模式，旨在通过以下方式改善残疾： 优化垂死者及其家人的生活质量。几乎所有关于临终关怀的研究 患有痴呆症的人，特别是在临终关怀中，将痴呆症作为主要诊断， 死亡的近因然而，老年人在生命的尽头往往有许多共存的条件。 许多临终关怀登记者，其临终关怀的适应症是痴呆症以外的诊断，仍然有共同的， 现有痴呆症。痴呆症与临终关怀适应症（如癌症或充血性心脏病）并存 失败可能会对护理和结果产生深远的影响。实现国家计划的目标 解决阿尔茨海默病，以提高护理质量，并扩大对护理人员和那些 我们需要确保老年痴呆症患者的临终生活质量得到优化， 痴呆症是死亡的主要原因，或与另一种生命终结状况并存。 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生活 在可能的情况下，提高残疾老年人的生活质量， 可能（改善）。拟议的行政补充规定将这一目标具体扩大到弱势群体， 老年人患有阿尔茨海默病和相关痴呆症。这一建议符合概念 指导UCSF OAIC的框架，该框架认为，对残疾和痴呆老年人的护理必须 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家健康老龄化和趋势研究（NHATS）， 未充分研究的人群：患有共病痴呆症的临终关怀登记者。 我们的建议旨在量化和比较老年人死亡的特征和结果， 痴呆症，同时接受另一种情况的临终关怀，与两组进行比较：A） 初步诊断为痴呆的临终关怀接受者和B）既没有初步诊断也没有初步诊断的临终关怀死亡者 诊断为痴呆或共病痴呆（例如，无痴呆）。来自ADRD补充的数据将 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来检查最终 生活经验和费用的人死于临终关怀与共病痴呆症。我们的研究结果将有助于 确定改善临终关怀的机会，并为死于痴呆症或死于痴呆症的临终关怀死者制定政策。 这些研究符合NIA 2020年的战略方向，以支持改善我们的研究。 （c）提高对ADRD的认识（目标D），并为制定干预措施和政策决定提供信息（目标E）。