digiDEM Bayern continues a success story: With more than 3,000 participants, Germany's largest dementia registry has reached a new high. The lighthouse project, funded by the Bavarian State Ministry of Health, Care and Prevention (StMGP), is thus also one of the largest European initiatives for collecting long-term data in the field of dementia care research. The goal is to improve the care situation for people with dementia and their caregivers – supported by innovative digital applications.
The numbers are unequivocal: „The dementia register is a knowledge base of inestimable value,“ says digiDEM Bavaria project lead Prof. Dr. Peter Kolominsky-Rabas. „Ultimately, it is always about noticeably improving the lives of people with dementia and their families – and digitalization can make a crucial contribution to this.“ Over 3,000 participants, 300 (as of 10/01/25) research partners, and on-site project assistants in all Bavarian administrative districts, and results that directly feed into research and care strategies: digiDEM Bavaria is on a growth trajectory.
For the dementia registry, individuals with mild cognitive impairments, as well as individuals with dementia and their caregivers, are surveyed. „The voluntary data donations from citizens are the foundation of our research. The data allows us to scientifically track the long-term progression of dementia diseases,“ emphasizes Prof. Dr. Peter Kolominsky-Rabas.
The neurologist emphasizes the central role of digitalization: „The digital analysis of large amounts of data opens up new opportunities. Modern methods, including the use of artificial intelligence, complement classic procedures and provide us with scientifically founded insights into the care of people with dementia and their caregivers in Bavaria. This allows us to give something back directly to those affected - whether through digital aids or transparent information.“
Digital Applications as a Bridge to Those Affected
Digital offerings have already emerged from the digiDEM Bavaria project. This includes the questionnaire „digiDEM Bayern DEMAND®“.“, with which caregivers and relatives can assess their individual support needs. Such user-friendly tools facilitate access to health information and help improve the quality of life for people with dementia and their caregivers and relatives.
„The development of these digital tools is only possible through the consistent and quality-assured evaluation of our collected data,“ explains Prof. Dr. Peter Kolominsky-Rabas. „This makes digitalization a real driving force for care, research, and prevention.“
Another important aspect is the long-term digital monitoring of new Alzheimer's medications. „Our registry allows us to document the efficacy and possible side effects independently and transparently over many years – a contribution to patient safety that remains free of lobby interests,“ says the digiDEM Bavaria project leader.
Politics can rely on registry research.
For health policy decision-makers, the validated findings from the evaluated data are of great interest. Because the results contribute to the development of targeted measures for those affected, especially in rural regions. Often, there is a lack of support services there.
So, digiDEM Bavaria is already cooperating with numerous „health regions."Plus“of the Free State. At the municipal district level, they are a core element of regional health promotion and care in Bavaria. „The health regionsPlus “doing exemplary work in carrying out our dementia screening days,„ explains Prof. Dr. Peter Kolominsky-Rabas. “Memory tests identify people who can voluntarily participate in our research project due to their cognitive impairments. This closes the circle."
From the dementia registry into everyday life
Registries are considered indispensable tools in medical research: they provide practical data on treatment and care and identify gaps in care. „With digiDEM Bavaria, we are strengthening this knowledge – and making differences between urban and rural areas visible, for example,“ says Prof. Dr. Peter Kolominsky-Rabas. The registry is already providing important insights.
Initial results indicate, for example, that there are significant qualitative differences in diagnostics in Bavaria: while specific dementia diagnoses are more frequently made in urban areas, the non-specific diagnosis of an unspecified „unspecified dementia“ is proportionally more often documented in rural areas.
The digiDEM Bavaria researchers also found that people with cognitive impairments live in their homes for an average of 32 months after a dementia diagnosis before admission to a nursing home becomes unavoidable. Another digiDEM Bavaria study points to a high risk of social isolation in people with dementia, particularly among friends. „Support services to promote social participation should therefore increasingly focus on areas outside the family,“ says Prof. Dr. Peter Kolominsky-Rabas.
Research partners emphasize the importance of early dementia detection.
The fact that digiDEM Bavaria can operate throughout the state is due to a strong network. Numerous research partners – from counseling centers, clinics, and outpatient services to pharmacies, medical practices, and volunteers – are involved in data collection. „We owe them our sincere thanks,“ says Kolominsky-Rabas. „They give affected individuals a voice on-site, make dementia research approachable, and raise awareness in their region for the importance of early dementia detection.“ The network shows how much local stakeholders care about integrating people with dementia into the center of society.
European Perspective as a Future Opportunity
The project has long been thinking beyond Bavaria on a European scale. With the planned „European Health Data Space“ (EHDS), the EU aims to make health data usable across national borders. This opens up new opportunities for registries like digiDEM Bavaria: Joint analyses across national datasets could make regional, cross-border differences in prevention and care visible and accelerate innovation.
„The potential for European data exchange is huge,“ emphasizes Prof. Dr. Peter Kolominsky-Rabas. „We can learn from each other and develop more effective solutions for people – not just in Bavaria, but throughout Europe.“
