People with no sense of direction sought for study on 'devastating condition'

A University of Calgary researcher is looking for Albertans who are perpetually lost. They may have a little-known neurological disorder.

Some get disoriented easily but others are lost their entire lives, U of C prof says

Some people are not able to hold directions and maps in their heads, meaning they can get lost walking the same route they must go every day. (CBC)

Many people get lost when navigating a new place but a University of Calgary psychology team is trying to find people who have absolutely no sense of direction.

Professor Giuseppe Iaria is studying a potentially hereditary neurological condition, known as developmental topographical disorientation (DTD), that causes people to be unable to hold maps or directions in their minds — and be perpetually lost, even in their own homes.

After investigating for a decade, Iaria is now looking for Albertans to join his research and undergo neurological tests.

He joined Calgary Eyeopener host David Gray on Monday to discuss his project, Getting Lost: Understanding Human Navigation.

Q: How can a person get lost in their own house?

A: They can get lost because they have never developed the ability to mentally represent where things are around them, something we refer to in science as a cognitive map.

When you move within the environment, you become familiar with the environment and you start building up in your mind a mental representation of where things are around you. This mental representation will help you to find your way around whenever you want to go anywhere within the environment.

People with DTD have never developed this ability and therefore, they can get lost in an environment where they have been for their entire life.

Q: How do people with this condition cope with everyday life because you'd literally be lost all the time?

A: It is challenging because they can't really move around without this sense of disorientation. They can go from place to place by using cabs or by relying on other people if they can.

But the idea of getting that sense of disorientation is always with you, even in your own house, in your own neighbourhood, so that is devastating for them.

We all have experience with this sense of disorientation, usually when we go to a new place.

It lasts a few seconds and is very, very devastating, so imagine living with this sensation your entire life. It is a very challenging condition.

Q: How easy is it to find these people to study?

A: It is easy to find people around the world. It is not easy to find people in Calgary.

So we are trying to recruit local people because we want to increase the sample size that we are investigating.

We want to establish, a little bit, what the neurological mechanisms are that are related to this condition. In order to do this, we need to scan people's brains, we need to do a series of computerized tests in our lab, and so it would be very helpful to recruit people from our own community.

Q: Can you cure them?

A: We are actually developing some training programs. Right now we are testing those training programs. We are testing programs in which we ask people to perform a task for about two weeks.

We're measuring the effect of those training programs on the ability to form mental maps and the neurological mechanisms that are important for that.

Q: When you tell someone who's been suffering from this their whole life that this is an actual condition, this isn't you having some kind of difficulty, that there's a real neurological disorder going on, are they relieved? How do they feel?

A: Absolutely. I receive many, many emails from people around the world, describing the sense of relief they have to know that someone can recognize the lifelong challenge they're going through.

I have to clarify, these people are normal people. They don't really have any other defects. They can be professors — they can be like anybody, really. And so they have cognitive capacities. It really fits with any job description. 

It's very hard for these people to explain to someone else that they actually have such a devastating condition, so when they find out — that someone actually has investigated and has established this as a neurological condition — they feel very, very happy about that.

This interview has been edited for length and clarity.

With files from Elizabeth Withey and the Calgary Eyeopener