Palliative Care for People Living at Home with Advancing Dementia and Their Caregivers

项目摘要/摘要 这是为克里斯塔·林·哈里森博士申请的K01奖，她的研究重点是改进 阿尔茨海默病和相关痴呆症老年人及其非正式照顾者的生活。Dr。 哈里森是华盛顿大学老年医学部的卫生服务和政策研究员兼助理教授。 加州大学旧金山分校(UCSF)。哈里森博士在定性方法方面有12年的经验。 在完成加州大学旧金山分校的衰老研究奖学金之前，领导了一家大型临终关怀机构的研究企业，并 实施科学证书。通过本申请表中提出的活动，哈里森博士将 通过一项侧重于以下方面的培训计划加强和解决她在经验方面的差距：a)高级统计 链接数据集中的方法，b)ADRD临床护理和研究，以及c)将混合方法数据转化为 ADRD干预。促进她职业发展的资源包括加州大学旧金山分校全国公认的 老年医学、记忆和老龄化中心、卫生政策研究所和K学者项目， 哈里森博士组建了一支拥有广泛专业知识的非凡的多学科团队。 阿尔茨海默病和相关的痴呆症是进行性的无法治愈的疾病，导致大量公众 健康负担。姑息治疗的重点是通过关注 严重疾病的个人和家庭的多维痛苦来源。有证据证明质量是姑息药 对晚期ADRD的护理主要来自疗养院的研究。对于70多万老年人来说 每年在家中死亡的晚期阿尔茨海默病患者，临床医生缺乏人群水平的证据 指导护理人员和患者预测和规划疾病变化。拟建的K01将会 解决关键知识差距并开发资源工具包，以支持由 神经学家。哈里森博士将首先使用具有全国代表性的数据集来纵向检查各种因素 居住在家中的重症和进展期患者与死亡率和疗养院住宿相关 阿德勒。其次，她将对与ADRD住在一起的老年人进行半结构化采访，目前 以及失去照顾者以了解临终和临终的经历和改善的机会 ADRD的姑息治疗。第三，哈里森博士将与多个利益相关者合作，完善和评估 用于神经病学临床实践的基本姑息护理资源工具包的可行性(例如 评估核对表，讨论严重疾病预后和高级护理的循证战略 适应ADRD的规划、推荐和计费指南，并总结了目标1和目标2中关于生活的证据 在国内与ADRD进行沟通，以提供前瞻性指导)。这个工具包的目标是提高神经学家的 与住在家里的老年人和老年残疾人和/或他们的非正式照顾者进行沟通。这个 拟议的研究将为哈里森博士提供支持的初步数据、培训和经验 未来有竞争力的独立R系列应用程序，以测试她的干预效果和效果。

Project Summary/Abstract This is an application for a K01 award for Krista Lyn Harrison, PhD, whose research focuses on improving life for older adults with Alzheimer’s disease and related dementias (ADRD) and their informal caregivers. Dr. Harrison is a health services and policy researcher and Assistant Professor in the Division of Geriatrics at the University of California, San Francisco (UCSF). Dr. Harrison has 12-years of experience in qualitative methods and led the research enterprise of a large hospice prior to completing a UCSF aging research fellowship and implementation science certificate. Through the activities proposed in this application, Dr. Harrison will strengthen and address gaps in her experience through a training plan focused on: a) advanced statistical methods in linked datasets, b) ADRD clinical care and research, and c) translating mixed-methods data into ADRD interventions. Resources to foster her career development include UCSF’s nationally-recognized Division of Geriatrics, Memory and Aging Center, Institute for Health Policy Studies, and K Scholar’s program, Dr. Harrison has assembled an extraordinary multidisciplinary team with extensive expertise. Alzheimer’s disease and related dementias are progressive incurable illnesses causing significant public health burden. Palliative care focuses on reducing suffering and improving quality of life by attending to the multi-dimensional sources of distress for seriously ill individuals and families. Evidence for quality palliative care for advanced ADRD comes primarily from research in nursing homes. For the more than 700,000 older adults with advanced Alzheimer’s disease who die at home each year, clinicians lack population-level evidence to guide caregivers and patients in anticipating and planning for disease changes. The proposed K01 will address critical knowledge gaps and develop a toolkit of resources to support basic palliative care provided by neurologists. Dr. Harrison will first use a nationally-representative dataset to longitudinally examine factors associated with mortality and nursing home stay among people living at home with severe and advancing ADRD. Second, she will use semi-structured interviews with older adults living at home with ADRD, current and bereaved caregivers to understand palliative and end-of-life experiences and opportunities to improve palliative care for ADRD. Third, Dr. Harrison will work with multiple stakeholders to refine and assess the feasibility of a toolkit of basic palliative care resources for use in neurology clinical practice (such as an assessment checklist, evidence-based strategies for discussing serious illness prognosis and advance care planning adapted for ADRD, referral and billing guides, and summarized evidence from Aims 1 and 2 on living at home with ADRD to inform anticipatory guidance). The goal of this toolkit is to improve neurologists’ communication with older adults living at home with advancing ADRD and/or their informal caregivers. The proposed research will provide Dr. Harrison with the preliminary data, training, and experience to support future competitive independent R-series applications to test the efficacy and effectiveness of her intervention.