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Routine data collection and prevalence studies


A number of strategies identified the lack of existing data in relation to the use of health and social care services or the prevalence of dementia within their countries as barriers to planning services and supports to meet the needs of people living with dementia.

Routine data collection

The Irish strategy specifically refers to the need for data collected as part of its assessment tool to be used within dementia research to inform the provision of dementia care. This was similar to the Swiss strategy which identified the need for national data on the structure of care services and their uptake, noting that at the cantonal level, such data are crucial to long-term management and care planning, as well as the quality of care services.

The Greek strategy identifies the need for collection of more robust and reliable data to inform care and treatment of people with dementia. Similarly, the Czech strategy identifies the need for epidemiological surveillance and monitoring in order to plan health and social services.

The German strategic document commits the Federal Government to overseeing nationwide health monitoring working alongside the Robert Koch Institute, including supporting the establishment of a national cohort of 200,000 people with the Helmholtz Association, as well as improving the collection of routine data for use in research.

The Israeli strategy commits to formulating an agenda for research that will focus on gaps in available data including in relation to the epidemiology of dementia, organisation of services and the socio-economic implications of the disease.

Prevalence/incidence  of dementia

The Scottish strategy commits to commissioning work to assess dementia prevalence, and considering which model applies best, noting that the use of the EUROCODE methodology did not align with other UK statistics, meaning estimates of the number of people with dementia varied considerably. Additionally, the Norwegian strategy also committed to commissioning a study on the prevalence of dementia.

Both the Israeli and Swiss strategy commit to considering the feasibility of establishing a monitoring system which would include the incidence and prevalence of dementia. The Swiss strategy further outlines that for medium and long-term care planning and management, there is a need for dementia to be better reflected in existing health statistics to determine demand for services. Similarly, the English strategy commits to ensuring that all commissioning bodies have access to improved local and national prevalence data to inform the commissioning and provision of services, primarily in relation to diagnosis and post diagnostic support services.

The Slovenian strategy commits to the establishment and maintenance of incidence and prevalence data on dementia, with a national anonymised registry, with responsibility sitting with the national public health body. Similarly, the Italian strategy commits to implementing epidemiological surveillance, in addition to supporting and coordinating national research in public health. The Maltese strategy also commits to supporting epidemiological research into the care and management of dementia.



Last Updated: Monday 29 April 2019


  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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