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

Abstract

BackgroundDementia 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.MethodsThe research is based on guided interviews withcountry-specific care experts. A mixed-methods approach with a combination ofopen and closed questions was used. All interviews wererecorded and transcribed verbatim based on the transcription rules of Kuckarts(2010). For data evaluation, the qualitative content analysis model of Mayring(2014) was used.ResultsIn all 17 countries, efforts fordementia-friendly care and models of good care practise exist. However, thereare large differences between European countries regarding the spread ofdementia-specific services. In nine countries (Bulgaria, Finland, Italy,Liechtenstein, Luxembourg, the Netherlands, Norway, Sweden, the UK), there arealready nationwide structures, while in five countries (Belgium, Greece,Ireland, Portugal, Romania), services are only available in certain regions. Inthree countries (Austria, Denmark, Germany) dementia-specific outpatientservices are widespread nationwide, whereas inpatient services are not.Simultaneously, in all countries, areas with major care gaps exist. SeveralEuropean states have an urgent need for action concerning the expansion of theprovision of dementia-specific services, the reduction of regional differencesregarding the provision of care, the elimination of barriers to access to care,the dementia-friendliness of services, and the participation of people with dementiaand their relatives in care and research.ConclusionsTo reduce the existing structural inequalitiesin care between and within European countries, and to establish quality-relatedminimum standards in the care of people with dementia, transnational conceptsare needed. The EU, in cooperation with care planners, research institutions,care providers, and patient organisations, should develop European careguidelines or dementia plans that contain concrete measures, schedules, andbudgets.