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.

项目概要/摘要 该项目名为“阿尔茨海默氏症的土著文化理解——研究与参与” (ICARE) 重点关注解决阿尔茨海默病及相关疾病日益增加的负担的迫切需要 美洲印第安人 (AI) 和原住民 (FN) 人群中的痴呆症 (ADRD) 我们的中心假设是： 文化和社区特定环境塑造了原住民 ADRD 疾病经历 足以产生 ADRD 的独特影响，需要根据文化定制诊断方法， 我们的目标是创建一个有关 AI/FN 生活经验的基础人种学数据库。 ADRD 可以进行检查，以便为制定文化上适当且安全的方法提供信息，以改善 我们的研究结果将为我们创造文化安全的长期目标提供信息。 针对北美原住民的临床指南以及痴呆症诊断和护理工具。 与大多数人相比，AI/FN ADRD 发生率大约高出三倍，发病时间早 10 年 较高的合并症发生率以及获得社会、经济和卫生资源的机会有限。 增加原住民的健康差异。文化和社区环境影响原住民的健康状况。 痴呆症方面的经验和基于文化的方法/资源可提高认识并改善 目前，几乎没有信息可以指导在文化上适当的努力来解决 ADRD。 ICARE 利用基于社区的参与式研究 (CBPR) 吸引明尼苏达州的 AI/FN 社区参与， 我们将对威斯康星州和安大略省进行 CBPR 定性人种学检查。 整个疾病轨迹的经历，包括： 对 ADRD 的文化理解和诊断经历； 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。 对痴呆症患者、护理人员和健康老年人进行半结构化深度访谈。 我们的定性分析方法结合了生物医学和原住民对 ADRD 的理解。 我们的研究有三个具体目标：首先，我们将记录和研究 ADRD 的生活经历。 跨越 3 个不同 AI/FN 地区（明尼苏达州红湖国家和大波蒂奇；奥奈达）的疾病轨迹 威斯康星州国家；安大略省马尼图林岛）并确定文化、卫生系统和社区影响因素 ADRD 诊断和针对 PWD 的路径护理 其次，我们将使用这些人种学数据来描述 AI/FN。 ADRD 的具体解释模型以及对 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，我们将进行。 将人种学知识协作知识转化为适合文化的健康 响应社区需求的宣传/教育工具（情况说明书、视频或培训模块）。 这是确定有效的、基于文化的方法来解决痴呆症的重要一步 AI/FN 人群中的相关不平等。

项目成果

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.

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

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

• 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.