Alzheimer's care management in minority groups: Identifying warning signs and crisis points in transitions from informal to formal care management in African American and Latino populations

项目摘要 阿尔茨海默氏症在西班牙裔和非裔美国人人口中日益受到关注，发病率和 与非西班牙裔白人人口相比，发病年龄更早。非正式的照顾者提供 主要护理阿尔茨海默病(AD)患者，由西班牙裔和非裔美国人照顾者 与非西班牙裔白人家庭相比，使用正式护理系统的频率较低，而且在较晚的阶段。 在密尔沃基县为阿尔茨海默氏症患者服务的社区组织很早就认识到了 非正式保健系统将初级保健管理过渡到正式的有偿保健，直到#年发生危机 无法提供护理，和/或无法在非正式护理中维护患者的健康和安全 系统发生。然而，目前还不清楚危机之前有哪些预警信号，以及哪些正式护理 提供者，包括医生、社会工作人员、护理人员、家庭工作者和痴呆症护理专家，知道 这些家庭出现了警示信号和危机。来自多方利益相关者社区联盟的数据和讨论 表明正式和非正式的护理系统在对早期预警信号的解释上可能存在分歧， 围绕护理过渡的危机点和文化考虑。从而评估照顾者和 医疗保健专业人员了解早期预警信号，以及两组人员将如何解读这些信息 为制定适应文化的危机前干预措施提供信息。这项研究的目的是确定这两个家庭 和正规护理提供者对护理过渡、警告信号和护理危机点的看法，以及在哪里 他们对这些情况的看法既有趋同，也有分歧。拟议的研究将收集家庭和 来自多达240名非裔美国人和西班牙裔家庭照顾者的服务提供商级别数据(包括成人和 青年关键线人)，以及通过社区联盟招募的50个服务提供者，包括 威斯康星大学密尔沃基分校，威斯康星医学院，联合社区中心，阿尔茨海默氏症 协会和密尔沃基县老龄问题部门。这项研究将是第一次在文化上确定 引导适应文化的非正规和正规教育发展的相关警示标志 与非裔美国人和西班牙裔社区进行干预，旨在避免护理危机。它还将 通过纳入青年照顾者来细微差别照看范式，提供了对 年轻人对照看过渡的看法以及他们认为的警示信号和危机点，增加了 非正式的护理知识和编程。拟议的研究涉及几个以社区为基础的 服务提供者，重点关注通过以下视角理解护理中的文化问题的必要性 目标人群访问和信任的组织。结果将有助于NIA的任务 通过加深对照顾者的理解，改善AD患者和照顾者的福祉 从非正规护理管理向正规护理管理过渡过程中的需求和固有差异。

Project Abstract Alzheimer's is a growing concern in Hispanic and African American populations, with increased incidence and earlier age of onset as compared to the non-Hispanic White population. Informal caregivers provide the majority of care for patients with Alzheimer's disease (AD),with Hispanic and African American caregivers accessing formal care systems less frequently and at later stages compared to non-Hispanic White families. Community organizations serving persons with Alzheimer's in Milwaukee county long recognize the lag in informal care systems transitioning primary care management to formal paid care, waiting until a crisis in inability to provide care, and/or inability to maintain the health and safety for the patient within the informal care system occurs. However, it is unclear what early warning signs preceded the crisis and what formal care providers, including physicians, social work, nursing, family workers and dementia care specialists, know about warning signs and crisis in these families. Data and discussions from a multi-stakeholder community coalition suggest that formal and informal systems of care may diverge in their interpretation of early warning signs, crisis points and cultural considerations around care transitions. Thus assessing what both the caregiver and healthcare professional know about early warning signs and how both groups interpret this information will inform the development of culturally adapted, pre-crisis interventions. This study aims to identify both family and formal care providers' views of care transitions, warning signs and care crisis points, and where their views of these situations both converge and diverge. The proposed study will collect family and service provider level data from up to 240 African American and Hispanic family caregivers (including adult and youth key informants), and 50 service providers recruited through a community coalition, including the University of Wisconsin-Milwaukee, Medical College of Wisconsin, The United Community Center, Alzheimer's Association and Milwaukee County Department on Aging. This study will be the first to identify culturally relevant warning signs to guide the development of culturally adapted informal and formal educational interventions with African American and Hispanic communities, designed to avert care crises. It will also nuance the caregiving paradigm through the inclusion of youth caregivers, providing the first insight into the youth view of caregiving transitions and what they see as warning signs and crisis points, adding dimension to informal caregiving knowledge and programming. The proposed study engages several community-based service providers, focusing on the need to understanding cultural issues in caregiving through the lens of organizations that are accessed and trusted by the target population. Results will contribute to the NIA mission to improve the well-being of AD patients and caregivers by developing a better understanding of caregiving needs and the disparities inherent in the transition from informal to formal care management.