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

土著文化对阿尔茨海默病和相关痴呆症的理解 - 研究和参与 (I-CARE)

• 批准号: 10353396
• 负责人: Kristen Jacklin
• 金额: $ 150.16万
• 依托单位: UNIVERSITY OF MINNESOTA
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-03-01 至 2026-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10353396
• 关键词: Address; Aging; Alzheimer' s Disease; Alzheimer' s disease model; Alzheimer' s disease related dementia; American Indians; Awareness; Caregivers; Caring; Clinical; Communities; Coupled; Data; Databases; Dementia; Dementia caregivers; Development; Diagnosis; Diagnostic; Disease; Economics; Education; Elements; Ethnography; Eye; Foundations; Funding; Goals; Guidelines; Health; Health Promotion and Education; Health Resources; Health system; Healthcare; Healthcare Systems; Indigenous; Indigenous American; Interview; Investments; Island; Knowledge; Light; Literature; Methods; Minnesota; Monitor; Native-Born; Oneida; Ontario; Participant; Pathway interactions; Persons; Population; Procedures; Qualitative Research; Quality of life; Recording of previous events; Research; Research Infrastructure; Resources; Services; Shapes; Shoulder; Site; Staging; Structure; Symptoms; Time; Training Activity; Wisconsin; age related; base; caregiving; community based participatory research; community-level factor; comorbidity; cultural health; early onset; experience; health disparity; health inequalities; improved; improved outcome; innovation; knowledge base; knowledge translation; outreach; personalized approach; social; social health determinants; tool

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.

项目摘要/摘要 该项目的标题为阿尔茨海默氏症的土著文化理解 - 研究与参与 （ICARE）侧重于迫切需要解决阿尔茨海默氏病及相关的燃烧 美洲印第安人（AI）和原住民（FN）人口的痴呆症（ADRD）。我们的中心假设是 文化和特定社区的背景形状在土著人口中的疾病经历 足够的足够多，可以产生不同的ADRD影响，需要对文化量身定制的诊断方法， 护理和教育。我们的目标是创建一个AI/FN实时体验的基础民族志数据库 可以检查的ADRD，以告知创建适当和安全的方法以改进 痴呆诊断，护理和外展。我们的发现将为我们的长期目标提供创造文化安全的目标 北美土著人口的临床准则和痴呆症诊断和护理工具。 与多数相比 人群。较高的合并症发生率和有限的社会，经济和卫生资源的机会 增加土著健康差异。文化和社区背景影响土著人民 具有痴呆症和文化扎根的方法/资源的经验提高了意识并提高 结果。当前，几乎没有信息可以指导文化上适当的努力来解决ADRD。 使用基于社区的参与研究（CBPR），Icare与明尼苏达州的AI/FN社区与 威斯康星州和安大略省。我们将对AI/FN LIVE进行CBPR定性民族志检查 在整个疾病轨迹中的经验，包括：ADRD的文化理解；诊断经验 和关心；以及AI/FN社区的优势和挑战。具体方法包括参与者观察 以及对患有痴呆症患者（PWD），护理人员和健康的老年人的半结构化访谈。 我们的定性分析方法涵盖了对ADRD的生物医学和土著理解。 我们的研究具有三个具体目标。首先，我们将记录并检查ADRD的现场经验 在3个潜水员/FN地区的疾病轨迹中 威斯康星州国家；马尼托林岛（Manitoulin Island），并确定影响的文化，卫生系统和社区因素 PWD的ADRD诊断和护理途径。其次，我们将使用此人种学数据来描述AI/FN ADRD的特定剥夺模型以及对ADRD生活质量，诊断和分期的理解 确定适当的诊断和评估AI/FN人群中ADRD的方法。第三，我们将进行 人种学知识转化为文化适当健康的协作知识翻译 促销/教育工具（事实说明书，视频或培训模块）以响应社区需求。这项研究 代表了确定有效的，具有文化基础的方法来解决痴呆症的重要步骤 AI/FN人群中的相关不平等。