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: 9790905
• 负责人: Kristen Jacklin
• 金额: $ 75.84万
• 依托单位: UNIVERSITY OF MINNESOTA
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-30 至 2021-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9790905
• 关键词: Address; Adopted; Affect; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; American Indians; Biological; Caregivers; Caring; Chronic Disease; Communities; Coupled; Data; Data Set; Dementia; Diagnosis; Diagnostic Procedure; Disease; Early Diagnosis; Economics; Education; Elderly; Elements; Ethnography; Eye; Family; Focus Groups; Foundations; Great Lakes Region; Health; Health Care Seeking Behavior; Health Resources; Healthcare Systems; Illness impact; Incidence; Indigenous; Individual; Intervention; Interview; Investments; Knowledge; Light; Literature; Measures; Methods; Minnesota; Modeling; Multicultural Education; Native-Born; North America; Ojibwe; Ontario; Participant; Patients; Perception; Persons; Politics; Population; Population Research; Prevalence; Procedures; Quality of life; Race; Recommendation; Research; Research Design; Shapes; Shoulder; Site; Staging; Sum; Symptoms; Wisconsin; Work; age related; base; burden of illness; care outcomes; care providers; community based participatory research; contextual factors; dementia caregiving; design; ethnographic method; experience; health care quality; improved; indigenous community; informant; knowledge base; personalized approach; social; social health determinants; tool

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.

我们的研究旨在改善痴呆症（PWD）的美洲印第安人/原住民（AI/FN）的生活 通过检查疾病对患者，家庭和社区的影响。这个基于社区的 参与研究（CBPR）与安大略省，威斯康星州和明尼苏达州的AI/FN社区参与。我们将 收集和分析有关阿尔茨海默氏症及其相关痴呆症的现场经验的定性数据 （ADRD）使用在我们先前的研究中成功建立的方法，包括参与观察， 顺序深入访谈和顺序焦点小组。我们的总体假设是文化和 社区特定的环境塑造了土著人口中的Adrd疾病经验，并创造了独特的 ADRD的影响需要文化量身定制的诊断和护理方法。 与多数人群相比，AI/FN的人受到痴呆症的不成比例和独特的影响 以及其他相关的慢性疾病。 AI/FN的人寿命更长，与年龄有关 但是，疾病几乎没有研究表明人们每天的ADRD经历。我们的 较早的研究发现，AI/FN的人将ADRD的症状视为生物学的自然部分 精神生命周期。这种文化理解以及对医疗保健系统的糟糕经验使 AI/FN老年人会尽早诊断并获得良好护理的可能性。需要研究 了解有助于早期诊断，医疗保健质量和PWD及其生活质量 家庭。我们建议（a）检查整个痴呆症疾病轨迹的经历和影响，以及（b） 根据医疗保健的结果确定土著人想要什么。 我们的具体目的是检查痴呆症患者的现场经历，因为疾病在3中进展 各种各样的AI/FN社区，以确定影响ADRD对ADRD的影响的文化和社区因素 PWD，家庭和社区。我们将分析对ADRD的看法和疾病经历 影响医疗保健寻求行为和疾病的影响。我们将研究特定于社区的 健康的决定因素会影响ADRD对PWD，其家庭和社区的影响。我们将 将对痴呆的特定文化理解置于更广泛的标准背景下，以评估质量 生活，诊断以及如何理解痴呆阶段以确定适当的诊断方法 测量AI/FN人中的ADRD。总而言之，我们的研究旨在发现对文化的理解 可用于创建特定方法来评估和管理ADRD的ADRD和老化 这些社区的影响。 我们的分析结合了西方和AI/FN爆炸性疾病模型，因此我们的发现可以转变为 参与参与的人们有意义和接受的建议和干预措施 研究，可以被北美其他其他土著社区广泛采用。