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

 描述（由申请人提供）：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%至710万。亚利桑那州（67.7%）和内华达州（73%）预计将有更大的增长，这两个州是拟议项目的目标，只有阿拉斯加估计有更大的增长。当将AD与其他相关痴呆（ADRD）结合时，估计值大幅扩大。在美国，大多数ADRD患者为非西班牙裔白人（NHW）;然而，在种族/族裔群体中，西班牙裔/拉丁裔和非洲裔美国人更有可能患有ADRD。最近对痴呆症治疗，护理和研究中的种族/种族差异进行了系统回顾和荟萃分析，发现一致的证据表明，少数群体，特别是西班牙裔/拉丁裔，比NHW同行更晚获得痴呆症诊断服务。2013年国家应对阿尔茨海默病计划指出，在早期阶段识别AD为早期患者（EP）及其护理伙伴（CP）创造了优势：例如，EP可以充分参与法律的，财务和护理决策;可以动员社会支持以解决当前和未来的问题。尽管如此，诊断点可以启动级联压力过程，可以对EP和CP健康和情绪健康产生负面影响，加强CDC对家庭健康作为国家公共卫生优先事项的认识。虽然在科学和医疗保健方面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措施，以解决早期二元体的福祉。迄今为止的研究有关键的局限性，包括RCT很少，重点是受过良好教育的NHWs，有限的治疗保真度协议，样本量小，对EP和CP的影响很小。该项目通过与EPIC（早期护理合作伙伴）进行RCT来解决以前研究的主要局限性，EPIC是一种早期的团体二元干预，已经通过社区组织在亚利桑那州不同社区的试点中提供，这些组织产生了与健康和福祉相关的积极EP和CP结果。拟议的RCT，EPIC II，将在两个州扩大EPIC，样本更加多样化，并包括维持收益评估。EPIC是一个跨学科的合作，由成熟的社区合作伙伴，一个promotora网络，以及全国公认的AD治疗和预防干预研究，实施和翻译专家组成。其创新之处在于将技能培训和护理规划独特地结合起来，帮助EP阐明他们的护理价值观和偏好，并与他们的CP一起成为积极的决策者，以实现积极的成果。EPIC建立在a）EPIC I试点的成功，B）与早期二元组的合作，表明EP可以有效和可靠地对他们的护理价值观和护理偏好做出反应，c）成功的临床试验中的干预成分（例如，REACH，REACH II）与不同群体的晚期AD护理人员，和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.