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: 10626715
• 负责人: Kristen Jacklin
• 金额: $ 151.08万
• 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/10626715
• 关键词: Address; Aging; Alzheimer' s Disease; Alzheimer' s disease model; Alzheimer' s disease related dementia; American Indians; Awareness; Caregivers; Caring; Clinical; Communities; Community Actions; Coupled; Data; Databases; Dementia; Development; Diagnosis; Diagnostic; Disease; Disparity; Economics; Education; Elements; Ethnography; Eye; Funding; Goals; Guidelines; Health; Health Promotion and Education; Health Resources; Health system; Healthcare; Healthcare Systems; Indigenous; Indigenous American; Inequity; Interview; Investments; Island; Knowledge; Life Cycle Stages; Light; Literature; Methods; Minnesota; Monitor; Morbidity - disease rate; Native-Born; Oneida; Ontario; 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; Training Activity; Wisconsin; age related; caregiving; community based participatory research; community-level factor; comorbidity; early onset; experience; health disparity; health inequalities; improved; improved outcome; innovation; knowledge base; knowledge translation; outreach; participant observation; personalized approach; phenomenological models; social; social health determinants; tool; video module

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.

项目总结/摘要 这个项目，题为土著文化的理解阿尔茨海默氏症-研究和参与 （ICARE）的重点是迫切需要解决阿尔茨海默病和相关疾病日益增加的负担。 痴呆症（ADRD）在美国印第安人（AI）和第一民族（FN）人口。我们的核心假设是， 文化和社区特定背景塑造了土著居民的ADRD疾病经历 足以产生ADRD的独特影响，需要文化上定制的诊断方法， 照顾和教育。我们的目标是创建一个基本的民族志数据库， 可供审查的ADRD，以便为创造文化上适当和安全的方法提供信息， 痴呆症诊断、护理和外展。我们的发现将为我们的长期目标提供信息， 临床指南和痴呆症的诊断和护理工具，为北美土著居民。 AI/FN ADRD发生率约为大多数ADRD的3倍，发病时间提前10年， 人口。合并症发病率较高，获得社会、经济和卫生资源的机会有限 增加土著人的健康差距。文化和社区环境影响土著人民的生活 痴呆症的经验和基于文化的方法/资源提高了认识， 结果。目前，几乎没有什么信息可以指导采取文化上适当的努力来解决ADRD问题。 ICARE利用基于社区的参与性研究（CBPR），让明尼苏达州的AI/FN社区参与进来， 威斯康星州和安大略。我们将对AI/FN的生活进行CBPR定性人种学检查 整个疾病轨迹的经验，包括：ADRD的文化理解;诊断经验 和护理;以及AI/FN社区的优势和挑战。具体方法包括参与观察 和半结构化的深度访谈与痴呆症（PWD），照顾者和健康的老年人。 我们的定性分析方法结合了生物医学和土著对ADRD的理解。 我们的研究有三个具体目标。首先，我们将记录和检查ADRD的生活经历 在3个不同的AI/FN地区（红湖国家和大波蒂奇，明尼苏达州;奥奈达 国家，威斯康星州;马尼图林岛，ON），并确定文化，卫生系统和社区因素的影响 ADRD诊断和PWD护理路径。其次，我们将使用这些民族志数据来描绘AI/FN ADRD的具体解释模型和对ADRD生活质量、诊断和分期的理解， 确定诊断和评估AI/FN人群ADRD的适当方法。第三，我们将开展 将民族志知识转化为文化上适当的健康知识 宣传/教育工具（概况介绍、视频或培训模块），以满足社区需求。本研究 代表了确定有效的，基于文化的方法来解决痴呆症的重要一步- AI/FN人口中的相关不平等。

项目成果

Cardiometabolic measures and cognition in early menopause - Analysis of baseline data from a randomized controlled trial.

更年期早期的心脏代谢量度和认知 - 对随机对照试验的基线数据的分析。

• DOI: 10.1016/j.maturitas.2022.04.004
• 发表时间: 2022-08
• 期刊: MATURITAS
• 影响因子: 4.9
• 作者: Pal, Lubna;Morgan, Kelly;Santoro, Nanette F.;Manson, JoAnn E.;Taylor, Hugh S.;Miller, Virginia M.;Brinton, Eliot A.;Lobo, Rogerio;Neal-Perry, Genevieve;Cedars, Marcelle I.;Harman, S. Mitchell;James, Taryn T.;Gleason, Carey E.
• 通讯作者: Gleason, Carey E.

Training Indigenous Community Researchers for Community-Based Participatory Ethnographic Dementia Research: A Second-Generation Model.

培训土著社区研究人员进行基于社区的参与性民族志痴呆研究：第二代模型。

• DOI: 10.1177/16094069231202202
• 发表时间: 2023
• 期刊: International journal of qualitative methods
• 影响因子: 5.4
• 作者: Blind,Melissa;Jacklin,Kristen;Pitawanakwat,Karen;Ketcher,Dana;Lambrou,Nickolas;Warry,Wayne
• 通讯作者: Warry,Wayne

Cardiology clinic patient attitudes toward and potential personal utility of genetic testing: Findings from a unique multiracial clinical sample.

• DOI: 10.1002/jgc4.1573
• 发表时间: 2022-08
• 期刊: JOURNAL OF GENETIC COUNSELING
• 影响因子: 1.9
• 作者: Erickson, Claire M.;Clark, Lindsay R.;Umucu, Emre;Vo, Nhi H.;Volgman, Annabelle Santos;Chin, Nathaniel A.;Ketchum, Fred B.;Jones, Carolyn H.;Gleason, Carey E.;Aggarwal, Neelum T.
• 通讯作者: Aggarwal, Neelum T.