ACTIFCare: ACces to Timely Formal Care

在缺乏可以改变包括痴呆症在内的神经退行性疾病进程的治疗方法的情况下，早期诊断被广泛认为是重要的。早期诊断被视为为未来的护理和治疗开辟了道路，可以帮助人们控制自己的生活并提前计划。许多欧盟国家现在已经采取了促进及时识别痴呆症的战略。及时获得痴呆症护理服务，如家庭护理，对于降低保健成本也很重要，例如通过推迟安置在疗养院。尽管有这些发展，但个人往往得不到他们所需的类型、质量和时间上的服务。这项建议旨在更好地了解医疗保健服务不平等的原因。我们将使用文献回顾、专家咨询和焦点小组来评估和比较欧洲各地提供正式家庭护理的医疗保健系统，以提供政策、服务和系统的概述。在个人层面，我们将评估8个欧盟国家痴呆症患者及其照顾者获得和使用正式护理服务的情况，并检查这与他们(未得到)满足的需求和生活质量的关系。将在这8个国家招募400名痴呆症患者和他们的照顾者，并进行为期12个月的跟踪调查。此外，还将评估成本、后果和新的具体成果衡量标准。这将导致在效率和成本效益方面确定获得正规护理的最佳做法路径。该项目将产生关于痴呆症护理路径的一个重要阶段的最佳做法的知识，在这个阶段，有很大潜力在短期和长期对生活质量产生积极影响。

In the absence of a cure that can alter the course of the Neurodegenerative Disorders, including the dementias, an early diagnosis is widely agreed to be important. Early diagnosis is seen as opening the way to future care and treatment, and can help people take control of their lives and plan ahead. Many EU countries have now adopted strategies to promote timely recognition of dementia. Timely access to dementia care services, such as home care, is also important for reducing health care costs, for example by postponing placement in a nursing home. Despite these developments, individuals are often not receiving services of the type, quality and timing that they need. This proposal aims to better understand the reasons for inequalities in access to healthcare. We will assess and compare health care systems giving access to formal homecare across Europe using literature review, expert consultation and focus groups, to provide an overview of policies, services and systems.At the individual level, we will assess the access to and use of formal care services by people with dementia and their carers in 8 EU countries, and examine how this relates to their (un)met needs and quality of life. A cohort of 400 people with dementia and their carers will be recruited across the 8 countries, and followed up for 12 months. In addition, costs, consequences and novel specific outcome measures will be evaluated. This will leadto the identification of best-practice pathways to formal care, in terms of efficiency and cost-effectiveness.This project will generate knowledge on best-practice with regards to an important stage of the dementia care pathway where there is great potential to impact positively upon quality of life in the short and long term.