Research Center and Memory Clinic, Fundació ACE, Institut Català de Neurociències Aplicades - Universitat Internacional de Catalunya, Barcelona, Spain; Networking Research Center on Neurodegenerative Diseases (CIBERNED), Instituto de Salud Carlos III, Barcelona, Spain.
GMV SECURE E SOLUTIONS, Valencia, Spain.
Alzheimers Dement. 2019 Jun;15(6):828-839. doi: 10.1016/j.jalz.2019.02.003. Epub 2019 May 7.
In most, if not all health systems, dementia is underdiagnosed, and when diagnosis occurs, it is typically at a relatively late stage in the disease process despite mounting evidence showing that a timely diagnosis would result in numerous benefits for patients, families, and society. Moving toward earlier diagnoses in Alzheimer's disease (AD) requires a conscientious and collective effort to implement a global strategy addressing the multiple causes hindering patient engagement at different levels of society. This article describes the design of the Models of Patient Engagement for Alzheimer's Disease project, an ongoing EU-funded public-private multinational initiative that will compare four innovative patient engagement strategies across five European countries regarding their ability to identify individuals with prodromal AD and mild AD dementia, which are "hidden" in their communities and traditionally not found in the typical memory clinic setting. The strategies include an online AD citizen science platform, an open house initiative at the memory clinics, and patient engagement at primary care and diabetologist clinics.
在大多数（如果不是全部的话）医疗体系中，痴呆症都存在诊断不足的情况，而且即使有越来越多的证据表明及时诊断会给患者、家庭和社会带来诸多益处，但诊断通常也只是在疾病进程的相对晚期才进行。要实现阿尔茨海默病（AD）的早期诊断，需要认真和集体努力，实施一项全球性战略，解决阻碍患者在社会不同层面参与的多种原因。本文介绍了正在进行的欧盟资助的公私跨国倡议——阿尔茨海默病患者参与模式项目的设计，该项目将比较五个欧洲国家的四种创新患者参与策略，评估其在识别有前驱期 AD 和轻度 AD 痴呆症个体方面的能力，这些个体“隐藏”在他们的社区中，传统上在典型的记忆诊所环境中找不到。这些策略包括一个在线 AD 公民科学平台、记忆诊所的开放日活动，以及在初级保健和糖尿病专家诊所的患者参与。
