Critical Decision Making in Alzheimer's Disease and Related Dementias in Mexican Americans

摘要 随着美国墨西哥裔美国人（MA）人口的持续增长和老龄化，我们将 发现阿尔茨海默病和阿尔茨海默病相关痴呆症 (AD/ADRD) 在 这个重要的群体。了解并减少 AD/ADRD 对 MA 的影响是一个重要的优先事项 公共卫生和政策制定。目前，我们对深度和广度的理解存在严重差距。 随着时间的推移 AD/ADRD 差异的决定因素，以及减轻这些疾病影响的潜在方法 在马萨诸塞州社区。 AD/ADRD 不仅影响患者，还影响家庭护理人员，他们在照顾方面遇到困难 对于一个面临不确定未来的亲人来说，他们的健康和安全需要做出许多复杂的决定。这些 常见但困难的决定，例如停止驾驶、安置疗养院和使用维持生命的药物 治疗可以通过多种疾病对患者和护理人员产生巨大影响 生命的终结。需要更多数据来了解不断增长的 MA 群体如何做出这些决策和 整合社会经济、文化和家庭。这些信息对于制定未来的干预措施是必要的 支持这些艰难的决定。 MA 文化还具有强烈的家庭支持价值观，这可能会产生积极的影响 影响这些决定并有助于减轻护理的一些负面影响。使用 以人口为基础的 MA 和非西班牙裔白人 (NHW) 群体，由非常成功的 “墨西哥裔美国人的认知障碍：一项基于人群的研究 (R01 NS100687)，我们将延长 队列随访，以随着时间的推移加深对 AD/ADRD 种族差异的了解。的 对该队列的长期随访将使我们能够评估认知障碍的长期轨迹 影响 MA 患者和护理人员，并了解种族的患病率、决定因素和影响 围绕 AD/ADRD 的共同决策存在差异。该项目将实现以下目标： 1) 将轨迹评估和种族特异性进展预测因素扩展到 AD/ADRD 的长期评估，如 以及 AD/ADRD 对家庭和护理人员的长期生活影响（在社区人群中） 德克萨斯州纽埃西斯县的墨西哥裔美国人和非西班牙裔白人； 2) 评估决定因素和 关于认知障碍患者面临的两个关键社区转型的决策的影响： 停止驾驶并过渡到长期熟练护理机构； 3) 审查种族差异 AD/ADRD 患者及其护理人员在社区中的临终治疗偏好 队列。该提案将阐明种族和社会经济因素对 AD/ADRD 及相关疾病的影响 跨老龄化范围的决策并协助制定有针对性的决策支持 对不同人群的干预。

Abstract With the continued growth and aging of the Mexican American (MA) population in the United States, we will see a tremendous expansion of Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) in this important group. Understanding and reducing the impact of AD/ADRD in MAs is an important priority for public health and policy making. Currently, there is a critical gap in our understanding of the depth and determinants of disparities in AD/ADRD over time, and potential ways to lessen the impact of these disorders in MA communities. AD/ADRD affects not only the patient, but also family caregivers, who struggle with caring for a loved one facing an uncertain future with many complex decisions about their health and safety. These common yet difficult decisions such as driving cessation, nursing home placement, and use of life-sustaining treatments can have tremendous impact on both patient and caregiver across the spectrum of disease through the end of life. More data are needed on how the growing population of MAs approach these decisions and integrate socioeconomics, culture, and family. This information is necessary to develop future interventions to support these difficult decisions. MA culture also has strong values of family support that may have a positive influence on these decisions and help mitigate some of the negative aspects of caregiving. Using the population-based cohort of MAs and non-Hispanic whites (NHWs) assembled from the highly successful “Cognitive impairment in Mexican Americans: a population-based study (R01 NS100687), we will extend the cohort follow-up to allow for enhanced understanding of ethnic disparities in AD/ADRD over time. The extended follow-up of this cohort will allow us to assess the longer-term trajectory of cognitive impairment affecting MA patients and caregivers and understand the prevalence, determinants, and impact of ethnic disparities in common decisions surrounding AD/ADRD. This project will address the following aims: 1) To extend the long-term assessment of trajectory and ethnic-specific predictors of progression to AD/ADRD, as well as the long-term life impact of AD/ADRD on families and caregivers, among a community-based cohort of Mexican Americans and non-Hispanic Whites in Nueces County, Texas; 2) To assess the determinants and impact of decisions regarding two critical community transitions facing individuals with cognitive impairment: cessation of driving and transition to long-term skilled nursing facilities; and 3) To examine ethnic disparities in end-of-life treatment preferences among individuals with AD/ADRD and their caregivers in a community-based cohort. This proposal will elucidate the impact of ethnicity and socioeconomic factors on AD/ADRD and related decision making across the aging spectrum and assist in the development of targeted decision support interventions among diverse populations.