EPIC: A Group-based Intervention for Early-stage AD Dyads in Diverse Communities

 描述(申请人提供)：2014年，约有520万美国人患有阿尔茨海默病(AD)。随着我们社会的老龄化，到2025年，美国65岁及以上AD患者的比例预计将增长40%，达到710万人。预计亚利桑那州(67.7%)和内华达州(73%)的增幅更大，这两个州是拟议项目的目标州，只有阿拉斯加州的增幅估计更大。当AD与其他相关痴呆(ADRD)相结合时，估计会大幅增加。在美国，大多数ADRD患者是非西班牙裔白人(NHW)；然而，在种族/民族群体中，拉美裔/拉丁裔和非裔美国人更有可能与ADRD共存。最近对痴呆症治疗、护理和研究中的种族/种族差异的系统回顾和荟萃分析发现，一致的证据表明，少数群体，特别是拉美裔/拉丁裔，获得痴呆症诊断服务的时间晚于他们的nhw同龄人。《2013年应对阿尔茨海默病国家计划》指出，在早期阶段识别阿尔茨海默病为早期患者(EP)及其护理伙伴(CP)创造了优势：例如，EP可以充分参与法律、财务和护理决策；可以为当前和未来的关切动员社会支持。尽管如此，诊断点可能会启动一种级联压力过程，对EP和CP的健康和情绪健康产生负面影响，加强CDC对家庭护理作为国家公共卫生优先事项的认识。虽然科学和医疗保健领域越来越重视早期发现和治疗，但没有相应地重视心理社会干预，以解决早期双胞胎的福祉。到目前为止，研究有关键的局限性，包括很少的随机对照试验，重点放在受过良好教育的卫生工作者身上，有限的治疗保真度方案，样本量小，对EP和CP几乎没有影响。该项目通过与EPIC(早期护理合作伙伴)进行RCT来解决先前研究的主要局限性，EPIC(早期护理合作伙伴)是一种早期的群体二元干预措施，已经在亚利桑那州的不同社区通过社区组织进行了试点，产生了与健康和福祉相关的积极的EP和CP结果。拟议的RCT，EPIC II，将以更多样化的样本在两个州扩展EPIC，并包括维持收益评估。EPIC是由成熟的社区合作伙伴、推动者网络和国家公认的AD护理和护理干预研究、实施和翻译方面的专家组成的跨学科合作。它的创新之处在于技能培训和护理规划的独特结合，帮助EP阐明他们的护理价值和偏好，并通过他们的CP成为积极的决策者，以实现积极的结果。EPIC建立在a)EPIC I试点的成功基础上，b)与早期二元体合作，表明EP可以有效和可靠地对其护理价值和护理偏好做出反应，c)成功的临床试验(例如，REACH，REACH II)中的干预组件，涉及不同的晚期AD照顾者群体，以及d)其基于群体的重点。

 DESCRIPTION (provided by applicant): In 2014, approximately 5.2 million Americans are living with Alzheimer's disease (AD). With the aging of our society, the US percentage of persons age 65 and older with AD is expected to grow 40% to 7.1 million by 2025. Larger increases are expected in Arizona (67.7%) and Nevada (73%), the two states targeted in the proposed project, with only Alaska estimated to have a greater increase. Estimates expand substantially when combining AD with other related dementias (ADRD). The majority of people in the US with ADRD are non- Hispanic whites (NHW); however, within racial/ethnic group, Hispanics/Latinos and African Americans are more likely to be living with ADRD. A recent systematic review and meta-analysis of ethnic/racial differences in dementia treatment, care, and research found consistent evidence that minority groups, particularly Hispanics/ Latinos, accessed dementia diagnostic services later than their NHW counterparts. The 2013 National Plan to Address Alzheimer's Disease states that identifying AD in its early stages creates advantages for early-stage people (EPs) and their care partners (CPs): for example, EPs can participate fully in legal, financial, and care decision-making; and social support can be mobilized for current and future concerns. Still, the point of diagnosis can start a cascading stress process that can negatively impact EP and CP health and emotional well-being, reinforcing the CDC's recognition of family caregiving as a national public health priority. While an emphasis on early detection and treatment in science and healthcare is growing, there is not corresponding emphasis on psychosocial interventions to address the well-being of early-stage dyads. Research to date has key limitations, including few RCTs, a focus on well-educated NHWs, limited treatment fidelity protocols, small sample sizes, and little impact on both EPs and CPs. This project addresses key limitations of previous studies by conducting an RCT with EPIC (Early-stage Partners in Care), an early-stage, group dyadic intervention, already offered in a pilot in diverse Arizona communities through community-based organizations that yielded positive EP and CP outcomes related to health and well-being. The proposed RCT, EPIC II, will expand EPIC across two states with an even more diverse sample and include maintenance of gains assessments. EPIC is an interdisciplinary collaboration of well-established community partners, a promotora network, and nationally recognized experts in AD caregiving and caregiving intervention research, implementation, and translation. Its innovation lies in a unique combination of skills training and care planning that helps EPs articulate their care values and preferences and become active decision makers with their CPs to achieve positive outcomes. EPIC builds upon a) the success of the EPIC I pilot, b) work with early-stage dyads showing EPs can respond validly and reliably about their care values and care preferences, c) intervention components in successful clinical trials (e.g., REACH, REACH II) with diverse groups of later-stage AD caregivers, and d) its group-based focus.