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

为患有晚期痴呆症的居家患者及其护理人员提供姑息治疗

• 批准号: 9976417
• 负责人: Krista Lyn Harrison
• 金额: $ 14.39万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-07-15 至 2024-02-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9976417
• 关键词: Address; Advance Care Planning; Advance Directives; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; Applications Grants; California; Caregiver support; Caregivers; Caring; Certification; Cessation of life; Characteristics; Clinical Research; Communication; Data; Data Set; Dementia; Dementia caregivers; Development; Disease; Distress; Doctor of Philosophy; Effectiveness of Interventions; Elderly; Family; Fellowship; Focus Groups; Fostering; Future; Geriatrics; Goals; Health; Health Policy; Health Services; Home environment; Hospitalization; Individual; Institutes; Intervention; Interview; Knowledge; Leadership; Level of Evidence; Life; Life Experience; Link; Medical; Medicare; Medicare claim; Memory; Mentored Research Scientist Development Award; Mentors; Methods; NCI Scholars Program; Neurologist; Neurology; Nursing Homes; Pain; Palliative Care; Palliative Medicine; Participant; Patients; Policies; Population; Prospective cohort; Public Health; Qualitative Methods; Quality of Care; Quality of life; Research; Research Personnel; Resources; Risk Factors; San Francisco; Series; Source; Specialist; Statistical Methods; Structure; Symptoms; System; Testing; Time; Training; Translating; United States National Institutes of Health; Universities; Work; advanced dementia; beneficiary; career development; caregiving; clinical care; clinical practice; dementia care; design; efficacy testing; end of life; end of life care; evidence base; experience; hospice environment; implementation science; improved; informal caregiver; medical specialties; memory care; modifiable risk; mortality; multidisciplinary; multiple data types; nursing home length of stay; outcome forecast; palliative; professor; social; tool; trend; usability

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.

项目总结/摘要 这是Krista林恩哈里森博士的K 01奖申请，她的研究重点是改善 老年痴呆症和相关痴呆症（ADRD）患者及其非正式照顾者的生活。博士 哈里森是一名卫生服务和政策研究员，也是纽约大学老年医学系的助理教授。 加州大学弗朗西斯科分校（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老龄化研究奖学金之前， 实施科学证书。通过本申请中提出的活动，哈里森博士将 通过培训计划加强和弥补她的经验差距，重点是： 链接数据集中的方法，B）ADRD临床护理和研究，以及c）将混合方法数据转换为 ADRD干预措施。资源，以促进她的职业发展，包括加州大学旧金山分校的国家认可的 老年医学部，记忆和衰老中心，卫生政策研究所，K学者计划， 博士哈里森组建了一支拥有广泛专业知识的非凡多学科团队。 阿尔茨海默氏症和相关痴呆症是一种进行性不治之症，对公众造成重大影响 健康负担。姑息治疗的重点是减少痛苦和改善生活质量， 严重疾病个人和家庭的多方面痛苦来源。质量缓解的证据 对晚期ADRD的治疗主要来自于疗养院的研究。对于70多万老年人来说， 虽然每年都有患有晚期阿尔茨海默病的成年人在家中死亡，但临床医生缺乏人口水平的证据， 指导护理人员和患者预测和规划疾病变化。K 01将 解决关键的知识差距，开发一个资源工具包，以支持基本的姑息治疗， 神经科医生哈里森博士将首先使用一个具有全国代表性的数据集， 与严重和进展性高血压患者的死亡率和疗养院入住率相关 ADRD。其次，她将使用半结构化的采访与老年人住在家里与ADRD，目前 和失去亲人的照顾者，以了解姑息和临终的经验和机会，以改善 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 神经病学临床实践中使用的基本姑息治疗资源工具包的可行性（如 评估清单，讨论严重疾病预后和提前护理的循证策略 适应ADRD的计划，转诊和计费指南，以及关于生活的目标1和2的总结证据 在家里与ADRD告知预期的指导）。这个工具包的目标是提高神经科医生的 与生活在家中的老年人进行交流，并与ADRD进展和/或他们的非正式照顾者进行交流。的 拟议的研究将为哈里森博士提供初步的数据，培训和经验，以支持 未来的竞争性独立R系列应用程序，以测试她的干预的功效和有效性。