Interview Data against dementia

What obligations do policy-makers have?
Caspers: Good education in childhood and adolescence help build up cognitive reserves. It is therefore worth investing in education. In later life, meanwhile, social isolation seems to be a significant risk factor with respect to dementia. It is important to raise awareness of this issue. However, we also focus on another important point.

Which is?
Caspers: We already know that the risk of dementia is influenced by very different factors. But what exactly does that mean for me as an individual? Presumably, the same preventive strategy has different effects on different people. Sport might greatly help one person, reducing cholesterol might help another person, while something completely different benefits a third. What we need is a truly individualised approach to preventing dementia.
Heinrichs: The advice up to now has usually been: Live healthily, don’t smoke, don’t drink, and so on – but this advice is given to everyone, and in many cases it doesn’t really register. Our idea is to be able to say in future: If you do these one or two things that are particularly important in your case, then your personal dementia risk falls, for example, from 30 to ten percent. Such a specific recommendation would provide much stronger motivation and be easier to put into practice. However, we also need to generate even more suitable health data and at the same time make much better use of existing data.

How would you approach this?
Heinrichs: One suggestion is to develop a mobile app that allows digital biomarkers to be filtered out. It’s possible that things like individual mobility profiles or language patterns could indicate a heightened risk of dementia long before the disease starts. Such an app would be a cheap and easy-to-use tool in order to stir interest among many people and obtain data from regular, everyday life, including outside the context of laborious studies.

That sounds like modern smart watches that measure everything from cardio fitness and sleeping patterns to ovulation – but which also often make mistakes.
Caspers: Further development is obviously needed. Digital biomarkers might, for example, from the mid-point of life, provide a reason for specific screening examinations in order to establish an individualised risk profile. Above all, it would be possible to combine the real-life data from an app with health data that already exist for many people.

What exactly do you mean?
Caspers: Take the electronic patient files or the billing data from health insurance providers, which are used in pseudonymised form for selected scientific analyses. Various platforms for the exchange of medicinal research data already exist in Germany. And in the German National Cohort (NAKO) health study, for example, some 200,000 people were regularly examined over many years, in some cases with MRT scans of the brain. If we could pool such widely dispersed health data with everyday data from an app, we could perhaps carry out, for example with the help of artificial intelligence, completely new modelling and discover connections that shed light on how dementia occurs in each individual case.

Expert on the Topic Professor Dr Svenja Caspers ▸

• Anatomy and Anthropology
• Election year 2021

An improved understanding of a disease does not automatically lead to more effective prevention. How realistic is the vision of deriving effective preventive measures for each individual person from such data-based analyses?
Caspers: We obviously cannot say it with absolute certainty – but that’s exactly what we are hoping for …
Heinrichs: … while at the same time we obviously don’t want to awaken false expectations along the lines of: Tomorrow, dementia will cease to exist. Nevertheless, a more efficient use of health data can deliver genuine progress, not only in relation to dementia, but also to many other diseases. Specifically, it would be possible to introduce something like a unique identifier for every patient, analogous to a tax identification number, making it easier to categorise various data collections. We also need a general change of attitude in Germany to make people understand that using health data for research can also be a good thing. Other countries, such as England or Scandinavian countries, have made much more progress in this regard.

Expert on the Topic Prof. Dr. Bert Heinrichs ▸

• Bioethicist
• University of Bonn

What if I don’t want to make my personal health data available or don’t even want to engage with the prospect of dementia later in life?
Heinrichs: It goes without saying that people should retain the right to determine what personal information is made available for preventive research. There can also be good reasons for not wanting to learn about one’s personal risk of dementia. Everyone has an individual right not to know. We ourselves see little sense in telling, for example, a fifty-year-old that they might suffer from dementia at the age of seventy if we don’t also tell them what they can do to reduce the likelihood. But this is precisely the point: Many people still believe that dementia is a matter of destiny. We want to change this way of thinking and show that more can probably be done to actively prevent this disease than is already possible today. Modern information technologies can only help with this.

The interview was conducted by Martin Lindner.