Indigenous Cultural Understandings of Alzheimer's Disease and Related Dementias - Research and Engagement (I-CARE)

项目摘要/摘要 这项名为《本土文化--阿尔茨海默氏症的理解--研究与参与》的项目 (ICARE)侧重于解决阿尔茨海默病和相关疾病日益加重的负担的迫切需要 美国印第安人(AI)和第一民族(FN)人群中的痴呆症(ADRD)。我们的中心假设是 文化和社区特定背景塑造土著居民的ADRD疾病经历 足以造成ADRD的明显影响，需要文化上量身定做的诊断方法， 关爱和教育。我们的目标是创建一个关于AI/FN生活体验的基础人种学数据库 可审查的ADRD，以便为创建文化上适当和安全的方法提供信息，以改善 痴呆症诊断、护理和外展。我们的发现将为我们创造文化安全的长期目标提供信息 北美土著居民的临床指南和痴呆症诊断和护理工具。 与大多数人相比，AI/FN ADRD的发生率大约高出三倍，发病时间早10年 人口。患病率较高，获得社会、经济和卫生资源的机会有限 增加土著居民的健康差距。文化和社区背景影响着土著人民 痴呆症经验和有文化基础的方法/资源提高认识和改进 结果。目前，几乎没有信息来指导从文化上适当地努力解决ADRD问题。 利用基于社区的参与性研究(CBPR)，ICARE与明尼苏达州的AI/FN社区接触， 威斯康星州和安大略省。我们将对AI/FN生活的人进行CBPR定性人种学检查 整个疾病轨迹的经验包括：对ADRD的文化理解；诊断经验 和关怀；以及AI/FN社区的优势和挑战。具体方法包括参与观察 以及对痴呆症患者(PWD)、照顾者和健康老年人的半结构化深度访谈。 我们的定性分析方法结合了对ADRD的生物医学和本土理解。 我们的研究有三个具体目标。首先，我们将记录和考察ADRD的生活经历 跨越3个不同AI/FN地区的疾病轨迹(红湖国家和大波蒂奇，明尼苏达州；Oneida 国家，威斯康星州，马尼图林岛)，并确定影响文化、卫生系统和社区的因素 PWD的ADRD诊断和护理路径。其次，我们将使用这些人种学数据来描绘AI/FN ADRD的具体解释模型及对ADRD生活质量、诊断和分期的认识 确定适当的方法来诊断和评估AI/FN人群中的ADRD。第三，我们将进行 协作知识将人种学知识转化为适合文化的健康 宣传/教育工具(情况介绍、视频或培训模块)，以回应社区需求。本研究 代表着确定有效的、基于文化的方法来解决痴呆症的重要一步- AI/FN群体中的相关不平等现象。

Project Summary/Abstract This project, titled the Indigenous Cultural-understandings of Alzheimer’s – Research and Engagement (ICARE) focuses on the urgent need to address the increasing burden of Alzheimer’s disease and related dementias (ADRD) in American Indian (AI) and First Nations (FN) populations. Our central hypothesis is that culture and community-specific context shape ADRD illness experiences in Indigenous populations significantly enough to create distinct impacts of ADRD requiring culturally tailored approaches to diagnosis, care and education. Our goal is to create a foundational ethnographic database of AI/FN lived experience of ADRD that can be examined to inform the creation of culturally appropriate and safe approaches to improve dementia diagnostics, care and outreach. Our findings will inform our longer-term goal to create culturally safe clinical guidelines and dementia diagnosis and care tools for North American Indigenous populations. AI/FN ADRD rates are approximately three times higher, with a 10-year earlier onset, compared to majority populations. Higher rates of co-morbidities and limited access to social, economic, and health resources increase Indigenous health disparities. Culture and community context influence Indigenous peoples’ experience with dementia and culturally grounded approaches/resources increase awareness and improve outcomes. Currently, there is little information to guide culturally appropriate efforts to address ADRD. Using community-based participatory research (CBPR), ICARE engages AI/FN communities in Minnesota, Wisconsin and Ontario. We will undertake a CBPR qualitative ethnographic examination of the AI/FN lived experience across the illness trajectory including: cultural understandings of ADRD; experiences with diagnosis and care; and AI/FN community strengths and challenges. Specific methods include participant observation and semi-structured in-depth interviews with people with dementia (PWD), caregivers, and healthy seniors. Our qualitative analytic approach incorporates both biomedical and Indigenous understandings of ADRD. Our research has three specific aims. First, we will document and examine the lived experiences of ADRD across the disease trajectory in 3 diverse AI/FN regions (Red Lake Nation and Grand Portage, MN; Oneida Nation, WI; Manitoulin Island, ON) and identify cultural, health systems, and community factors influencing ADRD diagnostic and care pathways for PWD. Second, we will use this ethnographic data to delineate AI/FN specific explanatory models of ADRD and understandings of ADRD Quality of Life, diagnosis and staging to identify appropriate approaches to diagnose and assess ADRD in AI/FN populations. Third, we will conduct collaborative knowledge translation of ethnographic knowledge into culturally appropriate health promotion/education tools (fact sheets, videos or training modules) to respond to community needs. This study represents an important step in identifying effective, culturally-grounded approaches to address dementia- related inequities in AI/FN populations.