Making Communication Possible for People with Unresponsive Wakefulness Syndrome

CITEC team researching a special type of training

Using targeted brain signals, this training is intended to enable people with unresponsive wakefulness syndrome to communicate with their surroundings. This would make it easier for these individuals to make themselves understood when they have, for instance, pain or certain needs.

Those who are unable to make themselves understood in their environment are also unable to express their needs: perhaps they are in pain, or are hungry or thirsty. Maybe it’s just that the radio plays too loudly every day, and they want someone to turn down the volume. This doesn’t happen, though, since no one knows what they want or need. Those suffering from unresponsive wakefulness are unable to just say what they want. For this, other methods of communication are needed, and this is what a team from the Cluster of Excellence CITEC is working on.

Unresponsive wakefulness syndrome can arise as the result of very severe brain damage from, for instance, a cerebral hemorrhage or an accident. In contrast to a coma, those suffering from unresponsive wakefulness syndrome breathe on their own and alternate between periods of wakefulness and sleep. But since they do not show any noticeable reactions to the outside world, they appear to be unconscious to the observer. In some cases, however, this impression can be misleading.

The CITEC team is researching a system that is intended to enable communication with patients who are capable of doing so. “We measure brain activity for this,” says Dr. Inga Steppacher, who is a member of the team. The basis for this is NeuroCommTrainer, which not only designed to recognize brain activity, but also to provide training. Steppacher uses NeuroCommTrainer with residents suffering from unresponsible wakefulness syndrome at the Haus Elim nursing care facility at the v. Bodelschwingh Foundation Bethel. Inga Steppacher works in the Affective Neuropsychology research group, which is headed by Professor Dr. Johanna Kißler. This group belongs to the Faculty of Psychology and Sports Science, and is also part of CITEC.

NeuroCommTrainer recognizes the phases of optimal wakefulness in the residents during which they best react to stimuli. To be able to record all reactions, in addition to electroencephalography (EEG), sensors are also used to measure minute changes in temperature, force, and distension (in the fingers, for example). Such changes can also express reactions.

To determine which residents have the best chance for success with this program, Steppacher first conducts a test. This test is designed to generate a certain reaction in the brain – the so-called N400 reaction. This occurs when people hear a sentence that does not make sense. With the sentence “My sister has four kids,” the N400 reaction should not occur. It should happen, however, with a sentence like “My sister has four blue,” as Steppacher explains. For this, it is not even necessary to change the word category – another typical sentence is “She drank coffee with milk and sugar,” versus “She drank coffee with milk and socks.”

“This reaction is unfortunately still not proof of consciousness,” says Steppacher. The brain is also capable of this during sleep, in a kind of pre-consciousness state. “We assume, however, that the likelihood of them being conscious is significantly higher in those who do have this reaction.” These patients then receive further training with NeuroCommTrainer. The project is funded with a total of 1.82 million Euro, from the Bundesministerium für Bildung und Forschung (Federal Ministry of Education and Research), among others, and will run until 2020. Professor Dr. Johanna Kißler is is coordinating the project.

The goal is the training is to enable patients to be able to respond to questions with a ‘yes’ or a ‘no.’ “If they are still able to move, thumb movements could also be used for this,” says Steppacher. She works with positive reinforcement: when the coma patient moves their thumb as requested, they hear their favorite music, or are praised by their parents or partner. If this works as intended, the thumb can be used to respond: moving the thumb twice can, for instance, be used to mean ‘no.’

But movement is not always a possibility. In such cases, brain waves are used. When listening to familiar music, a certain pattern emerges if unfamiliar sounds suddenly occur: this is called P300. “We want to train patients to consciously evoke this reaction,” says Steppacher.

If this works, simple questions would be asked next in order to find out if the responses are reliable, including questions about the patient’s name, whether they have siblings, or whether they are married. “We don’t want to set our expectations too high for this method,” says Steppacher. “First and foremost, this is about very simple ways of communicating in order to make everyday life easier for these patients.”

More information:
Unresponsive Wakefulness Syndrome: System to help patients communicate (press release from 24.05.2017):

Dr. Inga Steppacher, Bielefeld University
Cluster of Excellence Cognitive Interaction Technology (CITEC) / Faculty of Psychology and Sports Science
Telephone: +49 521 106-4533

Written by: Maria Berentzen