Dementia Prevention: Academies Call for Data Shift for Brain Health

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The scientific academies Leopoldina, acatech, and Akademienunion have presented a position paper on data-driven dementia prevention and are advocating for a paradigm shift: away from the fear of dementia, towards the positive resource of brain health.

Germany faces one of the greatest health policy challenges of the coming decades. Currently, 1.8 million people in the country live with dementia; by 2050, this number could rise to 2.7 million. The costs, which the healthcare system and relatives caring for patients bear today at 83 billion euros per year, could grow to 195 billion euros by 2060. However, a cure is not in sight.

And yet, the situation is not hopeless. “Up to 45 percent of all dementia cases are potentially preventable through prevention,” says Prof. Dr. Svenja Caspers, head of the Institute of Anatomy I at the University Hospital Düsseldorf and co-author of the position paper. The basis for this is provided by the current report by The Lancet Standing Commission on Dementia (Livingston et al. 2024). It identifies 14 modifiable risk factors – from low education in early life, hearing loss, high LDL cholesterol levels, and lack of exercise in middle age to social isolation, air pollution, and vision loss in old age.

The crucial question raised by the position paper is: How can this knowledge be translated into practice? According to the academies, the answer hinges on the use of data in the field of Digital Health.

Data as a Basic Requirement

Those who are to be individually prevented need individual data. Dr. Steffen Heß, head of the Research Data Center Health (FDZ Gesundheit) at the Federal Institute for Drugs and Medical Devices (BfArM), makes it clear that the starting situation is better than many think: “I would say, partly [the data is already available]. […] But one must not forget that parts of the health data ecosystem are already in place.”

Specifically, billing data from statutory health insurance funds, whose scientific value often has to be laboriously extracted, imaging data from university hospitals, and special registers for various diseases already exist. What is missing is a networked structure instead of a patchwork quilt for linking these sources, the addition of lifestyle, blood, and genetic data, and an infrastructure that enables long-term observations over decades. “Nationwide, there are rather too many data sources that would be relevant, and they all need to be integrated into an ecosystem,” says Heß. The position paper therefore calls for health data to be designed according to FAIR principles (findable, accessible, interoperable, reusable) and to be permanently usable for research – because prevention takes place over decades, not quarters.

The Data Protection Dilemma

For years, there has been debate about the use of particularly sensitive medical data. The Chaos Computer Club, for example, is already suing against the collection of billing data by the FDZ.

Heß emphasizes the legal situation: “In principle, however, I believe the premise always holds that the use of health data always depends on the purpose. That's what the General Data Protection Regulation also says.” For the FDZ Gesundheit, use for risk discrimination is explicitly prohibited by law.

Prof. Dr. Joachim L. Schultze, scientific director of the German Center for Neurodegenerative Diseases (DZNE) and co-author of the position paper, emphasizes the societal balancing act: “Do we say that we are safe and completely secure right now, so we don't look at any data, we don't link any? Or do we say we prefer to ensure that we do it right and invest there so that the investment costs for this expensive disease are reduced? And that is a societal decision that we have to make.”

Apps as a Tangible Entry into the Data World

The most concrete element of the presented initiative is scientifically sound apps. Applications that merely collect data without considering the biology of the disease produce too many false positives. In this context, experts also warn that digital tools must remain in the hands of medicine to maintain ethical standards, the position paper states.

“It's no use to us that we now have certain wearables or apps that measure activity, for example. And then we notice that there is less activity or that the language has changed, but it has nothing to do with Alzheimer's. Then we have a lot of false positives,” explains Schultze. The right approach: “We are developing apps that build on specific – and not just any existing tests, but apps that build, for example, on imaging procedures, that tell us exactly which areas in the brain change in the early stages of Alzheimer's disease. And with these apps, I query things that are normally localized as functions in these regions.”

Caspers also sees apps as an opportunity to reach people who otherwise have difficulty accessing the healthcare system: “It would be wonderful, of course, if one could make it as accessible as possible for all people through very low-threshold access options like an app […].” The goal is an ecosystem of apps – not a one-size-fits-all solution, but different interfaces for different population groups that produce the same scientific data in the background.

From Population Average to Individual Risk Profile

Caspers explains what is new about the approach: “We don't know if sport really makes the decisive difference for me as a person. We don't know that, and we can't predict it like that yet.” For this, models and data integration are missing. Researchers therefore call for an expansion of the infrastructure for complex prediction models to better map individual courses.

An example makes this concrete: For a person with high cholesterol but no diabetes, more exercise could be the decisive lever. For another with diabetes but no elevated cholesterol level, a specific antidiabetic medication might be more effective. “And this consideration of which profile is vulnerable where and at what point – that is actually the decisively new aspect that we are aiming for,” says Caspers.

Schultze adds another blind spot in current research: genetics. “In this Lancet report, genetics is always omitted because we already know that environmental influences have different effect strengths depending on my genetics.” Risk genes like APOE4 could significantly influence the effectiveness of prevention programs – so far hardly considered in population-wide recommendations.

Why Researchers Prefer to Talk About Brain Health

The authors and experts are increasingly avoiding the term “dementia prevention” and instead talking about “brain health.”

The background: Prevention focused on a disease carries the risk of stigmatization – both of those affected and of people who lead a lifestyle deemed “unhealthy.” Prof. Dr. Steffi G. Riedel-Heller, director of the Institute for Social Medicine, Occupational Medicine, and Public Health at the University Hospital Leipzig, emphasizes that communication science expertise is needed: “One must also be very sensitive in what message one gives. […] Medicine cannot do that on its own and should not do it.”

Schultze formulates the positive counter-proposal: “Brain health is also our topic for the future. I believe it is a positive resource. We don't want to scare people about the disease, but rather say we want to preserve this positive resource that each of us has for as long as possible. And that is a different message than saying, I just want to prevent dementia, because that is far-reaching.”

Context Prevention: Equal, Not Secondary

Riedel-Heller urges not to neglect the structural perspective. Individual risk profiles and apps are important, but population-wide measures should not be treated as mere add-ons: “I see it in an even larger context […] simultaneously population-wide prevention, i.e., concerning education and exercise, social participation, etc. So creating conditions that make healthy life choices possible. So I don't see that as accompanying or add-on […], but as equal.”

She points to a methodological problem: context prevention measures are difficult to investigate in classic study designs. “It is, of course, much harder to investigate such context prevention measures in studies. That must be said. But that doesn't mean they don't work, but that there are fewer studies, and more needs to be done there as well.”

Prevention Begins in Childhood, Not in Retirement

All parties involved agree: Starting prevention only in old age is too late. Caspers explains: “Early actually means possibly with measures that are relevant in childhood and adolescence […]. If I can then actively make decisions as an adult, I at least have the chance to deal with lifestyle-relevant factors very early on and thus, already at the age of twenty to thirty to forty, deal with such topics.”

Riedel-Heller emphasizes the paradigm shift: “When I studied, dementia was an age-related disease. That has fundamentally changed. We know that it has a long lead time, and today risk factor research must adopt a life-course perspective.” Schultze puts it formulaically: “Brain health is something that accompanies us from the very beginning into old age, and we must take care of it as a society, but also as individuals.”

Decade for Brain Health

The position paper culminates in a concrete political demand: The existing National Dementia Strategy should be transformed into a “Decade for Brain Health” starting in 2026 – cross-departmental, accompanied by an expert council, and embedded in a more comprehensive national strategy for health prevention.

Schultze is cautiously optimistic: “If you talk to politicians, they all stand behind Brain Health. When you then ask how we take the next step, it sometimes gets a bit thinner.” He remains combative: “I assume that if we continue to engage in dialogue, we will have the opportunity in the next one, two, or three years for politics to also see that it is valuable to invest there.”

Riedel-Heller sees the timing as favorable: “Germany needs a strategy for dementia prevention. Brain health, no question. And I think that needs to be pushed forward.”

(vza)