Structures for the care of people with dementia: a European comparison

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-022-08715-7.