digiDEM Bavaria is the largest dementia register in Germany

25.07.2023 16:48

With 1,500 study participants from all over Bavaria, the Digital Dementia Register Bavaria (digiDEM Bavaria) has reached a record level. This makes digiDEM Bayern the largest dementia register in Germany and is one of the most extensive projects for collecting long-term data in the field of dementia research in the European Union (EU). In the research project, funded by the Bavarian State Ministry of Health and Care (StMGP), the scientists are collecting data in all seven administrative districts of Bavaria on the care and treatment of people with dementia and their carers.

The aim of the digiDEM Bavaria research project is to use the knowledge gained to improve the living conditions of those affected and to provide them with digital support services. Bavarians themselves make a significant contribution to the research results, for example by taking part in dementia screening days in rural regions. digiDEM Bayern carries out this throughout Bavaria. “We experience a great response to the dementia screening days. In this way, we were able to significantly increase the number of study participants,” says neurologist and digiDEM Bavaria project manager Prof. Peter Kolominsky-Rabas. “We are particularly pleased that we can include many people in the very early phase of dementia in our register. This gives us the opportunity to monitor the entire course of the disease from the beginning.”

Voluntary “data donation” from citizens

Many people do not know that they have dementia. At the regional dementia screening days, those interested can have their memory performance checked directly on site - free of charge and with the help of a short scientific test. If early detection shows signs of cognitive impairment, those affected and their caring relatives later have the opportunity to provide the scientists with their health data voluntarily and anonymously in the sense of a “data donation”.

Successfully breaking new ground

Bavaria's Health and Care Minister Klaus Holetschek praised digiDEM Bayern's scientific commitment: “With the regional dementia screening days, digiDEM Bayern has successfully broken new ground. With the help of the data collected, digiDEM Bayern ensures the creation of a digital dementia register for Bavaria in order to better understand the long-term course of the disease.”

Largest dementia register in Germany

With 1,500 study participants from all over Bavaria, the Digital Dementia Register Bavaria (digiDEM Bavaria) has now reached a record level. What this means for dementia research is explained by Prof. Peter Kolominsky-Rabas: “digiDEM Bavaria is the largest dementia register in Germany and is also one of the most extensive projects for collecting long-term data in the European Union (EU) in the field of dementia research.” He emphasizes: “Our digiDEM Bavaria registry can also make a significant contribution to patient safety for people with dementia in Bavaria. As a long-term registry, it will be possible for us in the future to record and independently evaluate the worrying side effects of the newly developed Alzheimer's medications over the long term.” DigiDEM Bavaria creates transparency for the benefit of citizens, uninfluenced by the interests of the pharmaceutical industry and medical lobby groups.

As Prof. Peter Kolominsky-Rabas emphasizes, the enormous number of study participants is also due to the committed commitment of the digiDEM Bavaria research partners and regional project assistants. “The research partners and project assistants carry out the surveys in all seven administrative districts. Our heartfelt thanks go to you. They increase knowledge about dementia in their own region and raise awareness of the important topic of early detection of dementia.”

Intensive expansion of digital offerings

digiDEM Bayern also develops digital offers for people with cognitive impairments or dementia as well as caring relatives and volunteers. “digiDEM Bavaria is part of the Bavarian dementia strategy and maps the care situation of those affected throughout Bavaria. The digital offerings are crucial for improving their quality of life. In addition, caring relatives and volunteers also benefit from these offers,” says Health and Care Minister Klaus Holetschek.

The latest addition is the online questionnaire digiDEM Bayern DEMAND®. The individual needs for special support services of people with dementia and their carers can be identified within just 15 minutes. Anyone who answers the questions online will receive two important results for further guidance: an individual evaluation of their own care needs and an individual, tailored overview of helpful support offers.

Anyone interested can access the online questionnaire here digiDEM Bavaria DEMAND®