In 2009, researchers discovered that some people are born with a disorientation disorder. Those affected lack the ability to form a mental map of their surroundings. While most of us can find our way back without much thought, they can only perceive what is directly in front of them. “A severely reduced sense of navigation has an enormous impact,” explains Professor Ineke van der Ham. “People may be unable to travel independently or even go to the supermarket. A GPS phone often doesn’t help either, since many struggle to translate a map into the real world.”
The condition has recently been given a name: Atopia. The term was chosen as part of Professor Van der Ham’s current research project, which aims to raise awareness of the disorder. “Without language and recognition, people cannot be helped,” she explains. “Through this project, we want to make the condition known and ensure that it is recognized much earlier.”
Van der Ham is Professor of Technological Innovations in Neuropsychology at Leiden University. Her career began with abstract laboratory research, but over time she felt that this work was too detached from patients’ real experiences. “When I met people who, after a stroke, suddenly began getting lost more often, something clicked,” she says. “They became deeply anxious and insecure; it had a huge impact on their daily lives. And I thought: the lines and dots I study in the lab say nothing about this, even though this is what truly affects people.”
Van der Ham then turned to virtual simulations as a way to bring her research closer to people’s real experiences. In 2018, for instance, she launched a public game that allowed tens of thousands of people to test their navigation skills from home. “For the first time, this gave us reference values for different age groups,” she explains. “To better understand Atopia and develop treatments, we first needed to understand how healthy people navigate and which factors – such as age and environment – influence that ability.”
The experiment produced surprising insights that attracted widespread media attention. It revealed that age, not gender, is the most important factor in navigation ability. The study also showed that stereotypes play a major role in how people assess their own sense of direction: men tend to overestimate their skills, women underestimate theirs — and interestingly, children appear to have a more accurate sense of their own ability than adults do.
Many people don’t realize until later in life that they have trouble finding their way. “What we often see is that people only start coming up with coping strategies around the age of sixty,” says Van der Ham. “But by then, they’ve already spent a lifetime being dependent. The earlier you know you have this, the sooner you can develop ways to navigate independently.”
To raise awareness, Van der Ham and her research team developed a public website about Atopia together with team 8D. Over time, the site will bring together all the tools created within the project — including personal stories, practical tips, and educational materials for healthcare and education professionals. Beyond sharing information, the website is also meant to be a place for connection. “That’s why we’re adding a forum function,” Van der Ham explains. “This way, people with Atopia can find one another and share their experiences.”
“Through this website, people with Atopia can find each other and share their experiences.”
In addition to raising awareness, Van der Ham is also working on practical solutions. Earlier research showed that six weeks of training with navigation games can actually improve people’s navigation skills. Her research group developed a prototype game that allows players to practice navigating in a virtual environment. In collaboration with 8D, this game has now been further developed into a version suitable for use in hospitals and rehabilitation centers. A pilot will be conducted in 2025 and 2026 at three institutions: UMC Utrecht, Delft Rehabilitation Center, and De Hoogstraat Rehabilitation. “What’s great is that this game will become part of standard treatment,” says Van der Ham. “We’re not only looking at whether there’s measurable improvement, but also at how patients and therapists experience using the training game. That’s the only way to know whether an innovation truly has a chance to find its place in healthcare.”
“Everyone says technology should ease the burden on healthcare, but if the conditions don’t change, it never will.”
The implementation process comes with its share of challenges. Van der Ham explains: “You spend endless hours talking to committees and privacy officers, and in the end, nothing is allowed. It’s frustrating, but it also holds up a mirror to the system. Everyone says technology should ease the burden on healthcare, but if the conditions don’t change, it never will.”
That’s why Van der Ham looks beyond the pilot with the training game. Together with 8D and other project partners, she’s exploring ways to bring the challenges of implementation into public discussion. “We don’t just want to develop an intervention – we also want to expose the barriers that prevent such innovations from reaching everyday practice. By making those problems visible, we hope to work with researchers, healthcare professionals, and industry partners to find real solutions.”
Co-creation is a natural part of Van der Ham’s work. For instance, the first version of the training game featured a Greek mythology theme; it looked impressive, but feedback from the target group revealed several concerns. Van der Ham explains: “Therapists told us that people need to get lost virtually in a familiar setting, like a shopping street or a market. That makes it easier to translate what they learn in the game to the real world and to their own experiences.”
In these kinds of co-creation processes, a good designer can play a key role, says Van der Ham. “Designers ask practical and critical questions that researchers don’t always consider. They’ll simply say, ‘this won’t work in practice,’ or encourage you to bring prototypes to the target group early on. That may sound simple, but it adds tremendous value. It keeps projects grounded and prevents them from getting stuck in abstraction.”
Van der Ham experiences the collaboration with 8D as genuine and impact-driven. “You truly look at what’s needed, instead of just trying to sell a product or create something trendy. That means there’s much more focus on making effective choices, with an awareness of the system the innovation will become part of. You can really feel that difference.”
“Designers ask practical and critical questions that researchers don’t always think of – it keeps projects grounded and prevents them from getting lost in abstraction.”
The public website on disorientation disorders (called ‘De Weg Kwijt’) was launched in September 2025. This site will gradually bring together all resources related to Atopia, from flyers to personal stories and exercises. One important next step is the launch of an experiential game. “How do you explain what Atopia is if you don’t have it yourself? That’s almost impossible. That’s why we’re developing a game that allows relatives and professionals to experience what it’s like to live with this condition.”
These initiatives are part of a broader social ambition. Van der Ham explains: “We need to recognize Atopia much earlier, especially in young people. And we need a healthcare system where innovations can find their place more quickly. I hope this project not only raises awareness of Atopia but also helps to spark systemic change.”
Want to participate in the research or stay up to date? Visit www.dewegkwijt.com
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