Disorders of Consciousness and Locked-In Syndrome

A Disorder of Consciousness affects awareness and wakefulness

Disorders of consciousness occur when the brain systems that control wakefulness and awareness are affected. If your loved one experiences a Disorder of Consciousness, it can feel confusing and overwhelming. You may hear unfamiliar medical terms and feel unsure about what they mean. Recovery looks different for every person, but people can improve over time, especially with the right care and ongoing evaluation.

Types of Disorders of Consciousness

1. Coma: A coma is a state of deep unconsciousness. A person in a coma:

• Has their eyes closed
• Cannot be woken up
• Does not respond on purpose to sounds, touch, or pain
• Does not have normal sleep–wake cycles

Comas are usually temporary and may last days to weeks. As the brain begins to heal, a person may move into another state of consciousness.

2. Unresponsive Wakefulness Syndrome (previously called vegetative state): In this condition, a person may seem awake but is not aware. They may:

• Open their eyes and have sleep–wake cycles
• Make sounds or facial expressions
• Move in response to stimulation

It’s important to know that this condition can sometimes be misdiagnosed. Research shows that up to 40% of people may be incorrectly diagnosed based only on what is seen at the bedside. Newer brain imaging tools have found that some people may have hidden awareness that is not easy to see, sometimes called “covert consciousness”.

3. Minimally Conscious State (MCS): A minimally conscious state means a person shows small but clear signs of awareness. They may:

• Follow simple instructions sometimes
• Answer “yes” or “no” (by speaking or gestures)
• Say a few words or short phrases
• Move parts of their body on purpose

These responses may not happen every time and can be delayed. Careful and repeated checks are important to understand what the person can do.

A person with Locked-In Syndrome is fully awake and aware

Locked-in syndrome is often confused with a Disorder of Consciousness, but it is different. A person with locked-in syndrome is fully awake and aware, but they cannot move or speak because of paralysis. However, a person may be able to communicate using eye movements or blinking. As this condition can be mistaken for a Disorder of Consciousness, accurate diagnosis is very important.

Your loved one may still hear, feel, and process what is happening around them, even if they cannot respond.

Small, meaningful actions can help create a supportive environment for a loved one experiencing a Disorder of Consciousness or Locked-In Syndrome. Tips include:

• Sharing information about your loved one with the care team and posting it in the room. Download this handout from BIAA to post in their hospital room.
• Speaking gently and using familiar, reassuring language.
• Using their name and talking as if they can understand.
• Bring photos or meaningful personal items (as approved by the care team).
• Reading aloud or playing their favorite music.
• Limiting noise, stress, and the number of visitors at one time.

Compassionate answers. Real support. Every step of the way.

Contact the National Brain Injury Information Center at 1-800-444-6443 to speak to a specialist about:

• Help with care needs
• Legal and financial resources
• Services in your community