Tardive Dyskinesia: Care Staff Guide to Involuntary Movements from Antipsychotics

Some side effects of medicines are easy to see and some are subtle, slow to appear and easy to mistake for something else. Tardive dyskinesia is one of the latter. It causes repetitive, involuntary movements, most often of the mouth, tongue and face, and it develops in some people after months or years of taking antipsychotic medicines. The person themselves may not notice it. Care staff who spend time with people every day are well placed to spot the early signs. This guide, based on the MHRA's antipsychotics learning module, explains what tardive dyskinesia is and how staff can help.

What is tardive dyskinesia?

The MHRA describes tardive dyskinesia as a generally uncommon but serious extrapyramidal side effect of antipsychotic medicines. "Tardive" means late, and it typically appears months or years after treatment begins. It can also appear when treatment is stopped or reduced. It is thought to arise from increased sensitivity and number of dopamine receptors in a part of the brain called the striatum after long-term blockage by antipsychotics.

What does it look like?

According to the MHRA, the movements are stereotyped (the same pattern repeating), repetitive, painless, involuntary, quick and tic-like, and the person is usually unaware of them. They are worse when the person is agitated, ease with relaxation and are absent during sleep. Movements most often involve the mouth, tongue, face and jaw, and examples include:

• darting of the tongue in and out, sometimes called the fly-catcher sign
• sweeping of the tongue across the inside of the cheek, called the bon-bon sign
• horizontal protrusions of the tongue, called tromboning
• puckering or smacking of the lips
• grinding of the teeth or clenching of the jaw

The movements can also affect the eyelids, neck, limbs, trunk, and the muscles of breathing. Slower twisting movements and sustained abnormal postures, a form of dystonia, can occur and, according to the MHRA, are more common in young men and can be disabling. Our guide to dystonia describes this type of movement disorder.

Who is at risk?

The MHRA lists several risk factors:

• the total amount of antipsychotic taken over time (cumulative dose)
• advancing age, female gender and dementia
• a history of other extrapyramidal side effects
• organic brain damage, including head injury
• antimuscarinic drugs used to treat other movement side effects, which may make it worse

The MHRA also warns that raising the antipsychotic dose may temporarily mask the movements, giving a false impression that they have resolved. This is an important point for staff: if movements seem to improve after a dose increase, do not assume the problem has gone.

Why early spotting matters

The MHRA says staff should be vigilant for early signs, such as fine, worm-like movements of the tongue, and that the dose and duration of antipsychotic treatment should be kept to the minimum necessary. The course can vary. The movements often wax and wane and may settle on their own in younger people, but in a substantial minority they are irreversible. Early recognition gives the prescriber the chance to review treatment before the movements become established.

In older people with dementia, where antipsychotics have sometimes been prescribed for distress, review is especially important. Our guide to STOMP and antipsychotic medication review in dementia care explains why these medicines need regular, structured review.

What care staff should do

• Notice and describe. Record what you see, which parts of the body are involved, whether movements are present at rest or on activity, and when they started.
• Report early, to the senior on shift, the GP, the prescriber or the community mental health team, as your procedures direct.
• Do not stop or reduce the medicine yourself. The MHRA notes that symptoms may worsen in the first few weeks after the dose is reduced or stopped, so changes must be made by the prescriber with support and monitoring. Abruptly stopping an antipsychotic can also cause relapse of the underlying condition.
• Support formal checks. Prescribers often use a structured movement assessment during reviews, so make sure the person attends and that carers' observations are shared.
• Tell the person. People are usually unaware of the movements, so explain gently what you have noticed and why it is being passed on, and involve family or advocates as appropriate.

Treatment

The MHRA says the main steps are for the prescriber to reduce the antipsychotic dose and stop it where possible, or to switch to an antipsychotic with a lower likelihood of causing tardive dyskinesia. If the person is on a prolonged-release (depot) antipsychotic, the prescriber may consider switching to oral treatment. These are decisions that weigh up the risk of mental health relapse against the movement problem, and they need specialist input. Other medicines are sometimes used for tardive dyskinesia, which specialists will decide on.

Living with the movements

Involuntary movements of the mouth and face can affect eating, speaking, dental health and confidence. People may feel self-conscious or be stigmatised, particularly if others wrongly assume the movements are deliberate or a sign of intoxication.

• Check for difficulty chewing, tongue biting or food falling out of the mouth, and refer to a speech and language therapist if swallowing is affected.
• Support good oral and dental care, since grinding and clenching can damage teeth.
• Treat the person with dignity, and do not draw attention to the movements in public.
• Share information with colleagues so the movements are not mistaken for behaviour that challenges.

Movements may also come alongside symptoms of the person's underlying condition, such as psychosis. Our guide to psychosis and schizophrenia explains how antipsychotic treatment fits into a wider plan of support.

Frequently asked questions

Is tardive dyskinesia reversible?

The MHRA says it may settle on its own in younger people but is irreversible in a substantial minority, which is why early recognition and medicines review matter.

Is it painful?

The MHRA describes the movements as painless, and the person is usually unaware of them, although they can cause embarrassment and practical problems.

Does everyone on antipsychotics get it?

No. The MHRA describes it as generally uncommon, but it is a serious side effect and risk increases with the total amount of medicine taken and with certain individual factors.

Keep building your knowledge

Spotting side effects early protects health and dignity. Explore the health and social care learning available through Learnsignal CPD to keep your knowledge current.

This article is general information for care staff, based on published NHS and clinical guidance, and does not replace the advice of a person's own prescriber or clinicians. Never stop, start or change a medicine without clinical advice.