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

我们的研究旨在改善美国印第安人/第一民族(AI/FN)痴呆症(PWD)患者的生活 通过检查疾病对患者、家庭和社区的影响。这个以社区为基础的 参与性研究(CBPR)参与了安大略省、威斯康星州和明尼苏达州的AI/FN社区。我们会 收集和分析阿尔茨海默病及其相关痴呆患者生活经历的定性数据 (ADRD)使用我们先前研究中成功建立的方法，包括参与观察， 连续的深度访谈和连续的焦点小组。我们的首要假设是文化和 社区特定背景塑造了土著居民的ADRD疾病体验，并创造了独特的 ADRD的影响需要文化上量身定做的诊断和护理方法。 与大多数人群相比，AI/FN人群受到痴呆症的影响不成比例且独一无二 以及其他相关的慢性病。AI/FN人群寿命更长，与年龄相关的发病率更高 然而，很少有研究能揭示人们对ADRD的日常经历。我们的 早期的研究发现，AI/FN患者将ADRD的症状视为生物学和 精神生命周期。这种文化理解，加上在医疗保健系统方面的糟糕经历，使 AI/FN老年人得到早期诊断并得到良好护理的可能性较小。需要研究来 了解哪些因素有助于PWD及其患者的早期诊断、医疗质量和生活质量 家人。我们建议(A)审查痴呆症疾病发展轨迹中的经验和影响，以及(B) 确定土著人民在保健成果方面想要什么。 我们的具体目标是检查痴呆症患者在疾病进展过程中的生活经历。 不同的AI/FN社区，以确定影响ADRD影响的文化和社区因素 残障人士、家庭和社区。我们将分析人们对ADRD的看法和疾病经历 影响就医行为和疾病的影响。我们将研究如何针对特定社区 健康的社会决定因素影响ADRD对残障患者、其家庭和社区的影响。我们会 将对痴呆症的具体文化理解置于更广泛的标准背景下，以评估 生活、诊断以及如何理解痴呆症的分期以确定适当的诊断和治疗方法 测量AI/FN人群的ADRD。总而言之，我们的研究旨在发现对 ADRD和老龄化，可用于创建评估和管理ADRD及其 对这些社区的影响。 我们的分析结合了西方和AI/FN疾病解释模型，因此我们的发现可以 转化为有意义并为参与 研究并可被北美其他土著社区广泛采用。

Our research aims to improve the lives of American Indian/First Nations (AI/FN) persons with dementia (PWD) by examining the impact of the disease on patients, families and communities. This community-based participatory research (CBPR) engages AI/FN communities in Ontario, Wisconsin and Minnesota. We will collect and analyze qualitative data about the lived experience of Alzheimer’s and its Related Dementias (ADRD) using methods successfully established in our previous research, including participant observation, sequential in-depth interviews and sequential focus groups. Our overarching hypothesis is that culture and community-specific context shape the ADRD illness experience in Indigenous populations and create unique impacts of ADRD that require culturally tailored approaches to diagnosis and care. Compared to majority populations, AI/FN peoples are disproportionately and uniquely impacted by dementia and by other related chronic diseases. AI/FN people are living longer and have higher rates of age-related disease, yet, there has been little research that sheds light on peoples’ everyday experiences of ADRD. Our earlier research found that AI/FN people view symptoms of ADRD as a natural part of the biological and spiritual lifecycle. This cultural understanding, along with poor experiences with the health care system, makes it less likely that AI/FN older adults will be diagnosed early and receive good care. Research is needed to understand what contributes to early diagnosis, quality of health care and quality of life for PWD and their families. We propose to (a) examine experiences and impacts across the dementia illness trajectory, and (b) determine what Indigenous peoples want in terms of outcomes of health care. Our specific aims are to examine the lived experiences of people with dementia as the illness progresses in 3 diverse AI/FN communities to identify cultural and community factors influencing the impacts of ADRD on PWD, families and communities. We will analyze how perceptions of ADRD and the illness experience influence health care seeking behaviors and the impact of the illness. We will examine how community-specific Social Determinants of Health influence the impact of ADRD on PWD, their families and communities. We will place the specific cultural understanding of dementia within the broader context of criteria to assess quality of life, diagnosis and how dementia stages are understood to determine appropriate methods to diagnose and measure ADRD in AI/FN peoples. In sum, our research is designed to discover cultural understandings of ADRD and aging that can be used to create specific approaches to assessing and managing ADRD and its impacts in these communities. Our analysis combines western and AI/FN explanatory models of illness so that our findings can be turned into recommendations and interventions that are meaningful and accepted to the people participating in the study and can be adopted broadly by other Indigenous communities across North America.