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

工程摘要 阿尔茨海默氏症在西班牙裔和非洲裔美国人中日益受到关注，发病率增加， 与非西班牙裔白色人群相比，发病年龄更早。非正规护理人员提供 大多数护理阿尔茨海默病（AD）患者，西班牙裔和非裔美国人护理人员 与非西班牙裔白色家庭相比，获得正式护理系统的频率较低，并且在后期阶段。 在密尔沃基县为老年痴呆症患者服务的社区组织长期以来认识到， 非正式护理系统将初级护理管理过渡到正式的有偿护理，直到出现危机， 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早期预警信号， 提供者，包括医生、社会工作者、护理人员、家庭工作者和痴呆症护理专家， 这些家庭中的警示信号和危机多方利益攸关方社区联盟的数据和讨论 这表明正式和非正式护理系统对预警信号解释可能不同， 危机点和围绕护理过渡的文化考虑。因此，评估护理人员和 医疗保健专业人员了解早期预警信号，以及两组人员如何解释这些信息， 为制定适应文化的危机前干预措施提供信息。这项研究旨在确定两个家庭 和正式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 他们对这些情况的看法既有趋同，也有分歧。这项研究将收集家庭和 来自多达240名非洲裔美国人和西班牙裔家庭护理人员（包括成年人和 青年主要信息提供者）和通过社区联盟招募的50名服务提供者， 威斯康星大学密尔沃基分校，威斯康星州医学院，联合社区中心，阿尔茨海默氏症 协会和密尔沃基县老龄部。这项研究将是第一个从文化上确定 相关警示标志，以指导发展适应文化的非正规和正规教育 与非裔美国人和西班牙裔社区的干预措施，旨在避免护理危机。它还将 通过纳入青年照顾者来细微地改变照顾模式， 青年人对不断变化的过渡的看法以及他们认为是警告信号和危机点的看法， 非正式培训知识和编程。这项研究涉及几个社区， 服务提供商，重点是需要通过以下透镜了解文化问题 目标人群访问和信任的组织。结果将有助于NIA的使命 通过更好地了解AD患者和护理人员的健康状况， 从非正式护理管理向正式护理管理过渡过程中固有的需求和差距。

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.