Dementia without a diagnosis: This is how important family and friends are for those affected!

Dementia without a diagnosis: This is how important family and friends are for those affected!

On June 13, 2025, the results of an important study on dementia were presented at the FAU Erlangen-Nuremberg was carried out. The study, which is part of the “Digital Dementia Register Bavaria – digiDEM Bavaria” project, shows alarming findings: 75% of people with dementia live without a formal diagnosis. This is often due to a lack of knowledge about the symptoms of the condition.

The study analyzed data from 924 people who took part in the research between August 2020 and July 2023. Sources of information for people with cognitive impairments were examined. The results reveal that personal contacts with family, friends and doctors are viewed as the most important sources of information. The Internet, on the other hand, is perceived as untrustworthy, with over 60% of participants saying they had never used the Internet. Reasons for this include lack of interest, complexity and lack of perceived benefits.

Important sources of information

A total of eight sources of information were evaluated: Internet, television/radio, books/brochures, courses/lectures, newspapers/magazines, family/friends, pharmacy and personal doctor's visits. Interestingly, 40% of respondents consider family and friends to be a “very important source,” while 33% rate a personal doctor’s visit the same. The difference between the age groups is particularly striking: younger people rate digital information sources more highly than older people. Women value almost all sources of information, with the exception of the Internet, more highly than men.

Another key finding is that people with mild cognitive impairment rate information sources more positively than people with advanced dementia. These results suggest a significant discrepancy in perception that suggests more research and development in this area.

Digital Dementia Register Bavaria

The digiDEM Bavaria project, which has been running since January 1, 2019, aims to set up a digital dementia register in Bavaria. This is intended not only to improve the understanding of the clinical complexity and long-term course of dementia, but also to collect data on the treatment, care and use of services by people with dementia. Another focus is on the burden on caring relatives. The desired goals also include the provision of digital offerings and the creation of platforms to support volunteer work in dementia care.

In the context of these challenges, the treatment of Alzheimer's and related diseases requires an interdisciplinary approach that combines neurology, psychiatry and other disciplines. Preventive measures to reduce risk are crucial in order to maintain cognitive functions for as long as possible, as a study into the challenges in research and development of treatment concepts shows. Digital technologies could play a key role in improving the health literacy of patients and relatives.

Overall, these findings illustrate the need to take both the disease of dementia and the information needs of those affected and their relatives seriously and to respond accordingly. The development of an interdisciplinary approach to prevention and a targeted improvement in the provision of information could be crucial to increasing the quality of life of people with dementia and promoting early diagnosis.