Deutsches Zentrum für Neurodegenerative Erkrankungen e.V. (DZNE), Site Rostock/Greifswald, Ellernholzstraße 1-2, 17489, Greifswald, Germany.
Present Address: Universitätsmedizin Göttingen, Institut für Allgemeinmedizin, Humboldtallee 38, 37075, Göttingen, Germany.
BMC Health Serv Res. 2022 Nov 18;22(1):1372. doi: 10.1186/s12913-022-08715-7.
Dementia is a disease that impacts people with dementia, their families, and the healthcare system. In 2018, the number of people with dementia in the EU, the European Free Trade Association (EFTA), and the UK was estimated to be 9.1 million. National dementia strategies and publications by organisations such as Alzheimer Europe outline how dementia-specific care should be designed. This study aims to provide insights into existing formal care structures, models of good practise, and gaps in dementia-specific care for people with dementia in 17 European countries.
The research is based on guided interviews with country-specific care experts. A mixed-methods approach with a combination of open and closed questions was used. All interviews were recorded and transcribed verbatim based on the transcription rules of Kuckarts (2010). For data evaluation, the qualitative content analysis model of Mayring (2014) was used.
In all 17 countries, efforts for dementia-friendly care and models of good care practise exist. However, there are large differences between European countries regarding the spread of dementia-specific services. In nine countries (Bulgaria, Finland, Italy, Liechtenstein, Luxembourg, the Netherlands, Norway, Sweden, the UK), there are already nationwide structures, while in five countries (Belgium, Greece, Ireland, Portugal, Romania), services are only available in certain regions. In three countries (Austria, Denmark, Germany) dementia-specific outpatient services are widespread nationwide, whereas inpatient services are not. Simultaneously, in all countries, areas with major care gaps exist. Several European states have an urgent need for action concerning the expansion of the provision of dementia-specific services, the reduction of regional differences regarding the provision of care, the elimination of barriers to access to care, the dementia-friendliness of services, and the participation of people with dementia and their relatives in care and research.
To reduce the existing structural inequalities in care between and within European countries, and to establish quality-related minimum standards in the care of people with dementia, transnational concepts are needed. The EU, in cooperation with care planners, research institutions, care providers, and patient organisations, should develop European care guidelines or dementia plans that contain concrete measures, schedules, and budgets.
痴呆症是一种影响痴呆症患者、他们的家人和医疗保健系统的疾病。2018 年，欧盟、欧洲自由贸易联盟（EFTA）和英国的痴呆症患者人数估计为 910 万。国家痴呆症战略和阿尔茨海默病欧洲等组织的出版物概述了应如何设计特定于痴呆症的护理。本研究旨在深入了解 17 个欧洲国家中痴呆症患者现有正规护理结构、良好做法模式和痴呆症特定护理方面的差距。
该研究基于对特定国家护理专家的指导访谈。采用混合方法，结合开放式和封闭式问题。所有访谈均进行了录音，并根据 Kuckarts（2010）的转录规则进行了逐字转录。为了进行数据分析，采用了 Mayring（2014）的定性内容分析模型。
在所有 17 个国家，都为痴呆症友好护理和良好护理实践模式做出了努力。然而，欧洲各国在特定于痴呆症的服务传播方面存在很大差异。在 9 个国家（保加利亚、芬兰、意大利、列支敦士登、卢森堡、荷兰、挪威、瑞典、英国），已经建立了全国性的结构，而在 5 个国家（比利时、希腊、爱尔兰、葡萄牙、罗马尼亚），服务仅在某些地区提供。在 3 个国家（奥地利、丹麦、德国），全国范围内广泛提供特定于痴呆症的门诊服务，而住院服务则没有。同时，在所有国家，都存在主要的护理差距。一些欧洲国家迫切需要采取行动，扩大特定于痴呆症的服务提供，减少护理方面的区域差异，消除获得护理的障碍，使服务对痴呆症患者友好，并让痴呆症患者及其家属参与护理和研究。
为了减少欧洲国家之间和内部现有的护理结构不平等，并在痴呆症患者护理方面建立与质量相关的最低标准，需要制定跨国概念。欧盟应与护理规划者、研究机构、护理提供者和患者组织合作，制定包含具体措施、时间表和预算的欧洲护理准则或痴呆症计划。
