Investigating Informal Caregivers' Involvement in End-of-Life Care among Assisted Living Residents with Advanced Dementia and its Influence on Resident and Caregiver Outcomes

调查非正式护理人员参与患有晚期痴呆症的辅助生活居民的临终护理及其对居民和护理人员结果的影响

• 批准号: 10213932
• 负责人: MOLLY M PERKINS
• 金额: $ 222.49万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-06-01 至 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10213932
• 关键词: Activities of Daily Living; Address; Affect; Age; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Assisted Living Facilities; Awareness; Care given by nurses; Caregiver Burden; Caregivers; Caring; Characteristics; Communities; Complex; County; Dementia; Diagnosis; Distress; Elderly; Emotional; Face; Family; Family member; Frequencies; Friends; Future; Goals; Health; Healthcare; Hour; Individual; Intervention Trial; Investigation; Knowledge; Long-Term Care; Longitudinal Studies; Mediating; Medical; Mental Health; Mission; Monitor; Nature; Outcome; Perception; Persons; Play; Policies; Population; Privatization; Provider; Public Health; Quality of life; Recommendation; Research; Research Personnel; Resources; Role; Rural; Sampling; Science; Socioeconomic Status; Stress; Taxes; Time; Training; Training and Education; Visit; advanced dementia; adverse outcome; base; care burden; care providers; care recipients; caregiving; community living; dementia care; depressive symptoms; end of life; end of life care; experience; hospice environment; improved; informal care; informal caregiver; insight; physical conditioning; prospective; response; rural area; social; social model; trial design; urban area

PROJECT SUMMARY/ABSTRACT The public health burden of Alzheimer's disease and related dementias (AD/ADRD) continues to increase as the American population ages. We are becoming increasingly aware of myriad physical and emotional needs confronted by people with dementia and their informal caregivers (unpaid family and friends) particularly at end of life (EOL). Most persons with AD/ADRD in the U.S. die in long-term care (LTC) communities, and assisted living (AL), as the fastest growing LTC option in the U.S., is a primary provider of this care. AL is a social model of care and in most states does not provide 24-hour skilled nursing care; most care is provided by unlicensed direct care workers with little or no healthcare training. Therefore, residents' informal caregivers play a critical role in supplementing this care. Their involvement ranges from social visits to more intensive types of informal care provision, including hands-on-care and monitoring and managing care that AL staff and other formal care providers (e.g., hospice) provide. What effect such involvement has on the health of informal caregivers and their care recipients over time is unknown. Limited empirical evidence from cross-sectional and retrospective research shows that greater informal caregiver involvement, particularly involvement that is more labor intensive and emotionally taxing, is associated with higher caregiver burden and suggests that this burden may be greater for informal caregivers in AL compared with other LTC settings, particularly in the context of caring for residents with advanced dementia at EOL. Some studies show that lower informal caregiver involvement is associated with lower resident quality of life of residents but these relationships have not been investigated in AL in depth or over time and the direction of these effects is unclear. To address these critical knowledge gaps, we propose a prospective longitudinal multilevel study that will follow 280 residents diagnosed with advanced AD/ADRD (6 or higher on the 7-stage dementia scale) for 12 months and assess the caregiving experiences of residents' primary informal caregivers (n=280). We will select residents and their informal caregivers from a stratified random sample of 45 assisted living communities in Georgia. The overall goal of this 5-year study is to improve understanding of the relationships between and among informal caregiver involvement, informal caregiver health (e.g., perceived physical and mental health, caregiver burden, and distress), and quality of life of assisted living residents with advanced dementia at EOL and to identify potentially modifiable factors at multiple socioecological levels (individual, AL, and wider community-level) associated with adverse outcomes. The proposed study supports the National Alzheimer's plan and its mission to improve care and support of persons with AD/ADRD and their caregivers. It will address significant knowledge gaps that will advance science and provide information vital to guide policy and practice, including recommendations for training and education for staff and families, and inform future intervention trials designed to improve EOL dementia care.

项目总结/摘要 阿尔茨海默病和相关痴呆症（AD/ADRD）的公共卫生负担继续增加， 美国人口老龄化。我们越来越意识到无数的身体和情感需求 面对痴呆症患者和他们的非正式照顾者（无报酬的家人和朋友）， 生命（Life）在美国，大多数AD/ADRD患者死于长期护理（LTC）社区， 生活（AL），作为美国增长最快的LTC选择，是这项服务的主要提供者。AL是一种社会模式 护理和在大多数州不提供24小时熟练护理;大多数护理是由无执照的 直接护理人员很少或没有医疗保健培训。因此，居民的非正式照顾者发挥了关键作用， 补充这种照顾。他们的参与范围从社会访问到更密集的非正式活动， 护理提供，包括动手护理和监测和管理护理，AL员工和其他正式护理 提供者（例如，临终关怀）提供。这种参与对非正式照顾者的健康有什么影响， 他们的照顾对象随着时间的推移是未知的。来自横截面和回顾性的经验证据有限 研究表明，更多的非正式照顾者参与，特别是参与， 密集和情感负担，与较高的照顾者负担有关，并表明这种负担可能 与其他LTC环境相比，AL中的非正式照顾者更大，特别是在照顾方面 老年痴呆症晚期患者的治疗方案一些研究表明，较低的非正式照顾者参与是 与居民生活质量较低有关，但这些关系尚未在 AL在深度或随着时间的推移，这些影响的方向尚不清楚。为了弥补这些关键的知识差距， 我们提出了一项前瞻性纵向多水平研究，将跟踪280名被诊断为晚期乳腺癌的居民， AD/ADRD（7级痴呆量表6或更高）12个月，并评估 居民的主要非正式照顾者（n=280）。我们将选择居民和他们的非正式照顾者从一个 格鲁吉亚45个辅助生活社区的分层随机样本。这项为期5年的研究的总体目标是 为了更好地理解非正式照顾者参与之间的关系， 护理者健康（例如，感知的身体和精神健康，照顾者负担和痛苦），以及生活质量 晚期痴呆的辅助生活居民在EOL，并确定潜在的可改变的因素， 与不良结局相关的多个社会生态水平（个体、AL和更广泛的社区水平）。 这项拟议的研究支持国家阿尔茨海默氏症计划及其使命，以改善护理和支持， AD/ADRD患者及其护理人员。它将解决重大的知识差距， 科学和提供对指导政策和实践至关重要的信息，包括培训和 教育工作人员和家庭，并为未来的干预试验提供信息，旨在改善EOL痴呆症护理。

项目成果

Understanding Capacity and Optimizing Meaningful Engagement among Persons Living with Dementia.

了解痴呆症患者的能力并优化有意义的参与。

• DOI: 10.1177/14713012231162713
• 发表时间: 2023
• 期刊: Dementia (London, England)
• 作者: Kemp,CandaceL;Bender,AlexisA;Morgan,JenniferCraft;Burgess,ElisabethO;Epps,FayronR;Hill,AndreaMichelle;Perkins,MollyM
• 通讯作者: Perkins,MollyM