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

项目摘要/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(无偿的家人和朋友)，特别是在 生命(EOL)。在美国，大多数AD/ADRD患者死于长期护理(LTC)社区，并得到援助 Living(AL)作为美国增长最快的LTC选择，是这种护理的主要提供者。艾尔是一位社会模范 在大多数州，不提供24小时熟练护理；大多数护理是由无证提供的 接受过很少或根本没有医疗培训的直接护理人员。因此，居民的非正式照顾者起着至关重要的作用 在补充这种护理方面的作用。他们的参与范围从社交访问到更密集的非正式类型 提供护理，包括亲自护理以及监测和管理AL工作人员的护理和其他正式护理 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 他们的护理对象随着时间的推移是未知的。来自横断面和回溯性的有限经验证据 研究表明，更多的非正式照顾者参与，特别是参与更多的劳动 紧张和情感上的负担，与较高的照顾者负担相关，并表明这种负担可能 与其他长期护理环境相比，AL中的非正式照顾者的作用更大，尤其是在护理的背景下 适用于EOL的晚期痴呆症患者。一些研究表明，较低的非正式照顾者参与度 与较低的居民生活质量有关，但这些关系尚未在#年进行调查 这些影响的方向尚不清楚。为了解决这些关键的知识差距， 我们提出了一项前瞻性的多水平纵向研究，将跟踪280名被诊断为晚期癌症的居民。 AD/ADRD(7级痴呆量表中6级或以上)为期12个月，并评估 居民主要非正式照顾者(n=280)。我们将从一个 佐治亚州45个辅助生活社区的分层随机抽样。这项为期5年的研究的总体目标是 为了提高对非正式照顾者参与之间关系的理解，非正式 照顾者健康(例如，感知的身心健康、照顾者负担和痛苦)和生活质量 在EOL对患有晚期痴呆的辅助生活居民进行评估，并确定潜在的可修改因素 多个社会生态水平(个人、急性白血病和更广泛的社区水平)与不良后果相关。 拟议的研究支持国家阿尔茨海默氏症计划及其改善护理和支持的使命 AD/ADRD患者及其照顾者。它将解决重大的知识差距，这将推动 科学，并提供对指导政策和实践至关重要的信息，包括培训和培训建议 对工作人员和家庭进行教育，并为未来旨在改善EOL痴呆症护理的干预试验提供信息。

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.