Globally, 75 percent of all people with dementia live with the condition without it ever being diagnosed. This means dementia is often underdiagnosed – primarily due to a lack of knowledge about the disease and its symptoms. This raises the question of where exactly people with mild cognitive impairments and people with dementia get their information and which sources they trust. Scientists at the Digital Dementia Registry Bavaria (digiDEM Bayern) at Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU) are showing which sources for health information – such as newspapers, radio, and the internet – affected individuals prefer and how they can best be reached.. The research findings underscore the importance of personal, interpersonal communication with family and friends, as well as with doctors. In contrast, the internet is considered a less relevant and trustworthy source.
With the study, the researchers, led by lead author Florian Weidinger, a research associate at digiDEM Bavaria, have broken new ground. This is because it has not yet been researched which sources of health information people with cognitive impairments use and how they evaluate them.
Nearly three-quarters of the German population has limited health literacy. „Health literacy means being able to obtain, understand, and evaluate information and thus contribute to improving one's own health,“ says Prof. Dr. Peter Kolominsky-Rabas, neurologist and Project Lead for digiDEM Bavaria. Therefore, it is important to build or strengthen health and „dementia literacy,“ especially in older people. To achieve this, the quality and credibility of the information are crucial: „It makes a big difference whether I speak with a doctor or with my best friend, for example, or if the information comes from a questionable source,“ explains Florian Weidinger.
Eight different sources of information
The team led by Florian Weidinger investigated eight different sources of information: the internet, television/radio, books/brochures, courses/lectures, newspapers/magazines, family/friends, pharmacies, and personal doctor visits. „For people with cognitive impairments, the trustworthiness of the various sources plays a crucial role, among other things,“ summarizes Florian Weidinger.
He explains which sources were particularly significant for the study participants: „Exchanges with family and friends and personal conversations, for example with a doctor or therapist, are the top priorities for those affected.“ Thus, 33 percent of people with cognitive impairments considered personal doctor visits to be a „very important“ source; for about three-quarters, doctor consultations were considered at least „important.“.
Traditional media play an important role
A similar result was observed in the family/friends category. For nearly 40 percent of study participants, family members and friends are a „very important source“ of information on the topic of health, and more specifically, on dementia. Traditional media such as television, radio, newspapers, magazines, and books followed in the next places.
Internet disconnected
„The worst-rated people with cognitive impairments use the internet, as well as courses and lectures,“ says Florian Weidinger, noting that with over 60 percent, more than half of the participants have never used the internet. „Respondents cited general disinterest in the internet and that they find the internet too complicated as reasons. Many also believed that the internet offers them no benefits or that traditional media suffice for staying informed.“
Nevertheless, a trend is emerging, as Prof. Dr. Peter Kolominsky-Rabas emphasizes: „Due to the continuous improvement of digital literacy among older adults, the internet will gain importance as a source of health information in the future. This development is clearly evidenced by the Eighth Age Report of the German Federal Government „Older People and Digitalization“.".
Differences in age and gender
Depending on age, the results showed significant differences. While younger respondents still rated the internet and courses/lectures somewhat higher, the importance of these two sources decreased with increasing age. In contrast, the relevance of family and friends as sources of information increased significantly in older age and with the progression of the disease. Women rated almost all sources of information - with the exception of the internet - higher than men.
People with Mild Cognitive Impairment (MCI) considered most sources of information more important than people with dementia did. The latter rely more on family and friends, as well as media such as television and radio.
About the study:
A total of 924 individuals with MCI and dementia, who participated in the research project between August 2020 and July 2023, were analyzed. Their ages ranged from 54 to 102 years. Participants rated the eight different information sources on a scale from „unimportant“ to „very important.“ The study is part of the ongoing project „Digital Dementia Register Bavaria – digiDEM Bavaria.“ The Digital Dementia Register Bavaria is a longitudinal study conducted in all Bavarian administrative districts.
Service for readers:
The digiDEM Bavaria Dementia Library® is a comprehensive and freely accessible knowledge portal that provides well-founded, scientifically sound, and generally understandable information on the topic of dementia to a broad audience. The goal of digiDEM Bavaria's offering is to strengthen health literacy in the population, to educate about dementia risks, but also to contribute to the early detection of dementia and to improve the care situation for people with dementia and their caregivers.
This way to the digiDEM Bavaria Dementia Library®.
Also the one developed by digiDEM Bayern Dementia Quiz is a path to greater health literacy. The free online test includes 30 questions and answers, for example, in the areas of risk factors, care and support, or symptoms and disease progression.
To our online survey digiDEM Bavaria DEMAND® Get here.
Original Study
