5 Things You Should Know About Tardive Dyskinesia

Tardive dyskinesia, or TD, is a drug-induced movement disorder that can occur in individuals taking certain medications that block dopamine receptors in the brain. Most commonly, cases of TD are caused by antipsychotics—medications that are used to treat a wide variety of mental health disorders including autism, schizophrenia, bipolar disorder, and as add-on treatment to antidepressants for major depressive disorders. Antipsychotics are also prescribed in some cases "off label" for a wide variety of symptoms such as insomnia and anxiety.

What TD looks like can vary from person to person, but in general these are uncontrollable, involuntary movements that are repetitive and persistent, lasting at least four weeks or more. These movements can be "dance like" or slow and writhing. TD commonly affects the face, mouth, hands, and feet, but can affect any muscle in the body including muscles that are used to breath and swallow. Movements can look like fast or excessive blinking, lip smacking or pursing, chewing movements of the mouth, grimacing or unusual facial expression, as well as finger tapping or toe wiggling. In some cases, if the muscles used for swallowing are affected, it can cause trouble swallowing or even choking.

1. TD Is More Common Than You May Think

It is estimated that in the United States, up to 800,000 people are living with TD, but most go undiagnosed.

Studies show that among individuals taking second-generation antipsychotics, prevalence is 20%, or around 1 in 5 people taking antipsychotics. For individuals taking first-generation antipsychotics, such as haloperidol, they carry a higher risk—up to 30% or 1 in 3 are estimated to have TD.

2. Some People Have a Higher Risk of Developing TD

Although the type of antipsychotic (first- or second-generation) affects TD risk, other factors can further increase the likelihood of developing TD during treatment. Higher doses of antipsychotics over extended periods of time is a key risk factor. Additionally, being over 50 years old can increase your likelihood of developing TD by three to five times more.

Other Risk Factors for TD Include:

• Treatment with anticholinergics (e.g., benztropine, trihexyphenidyl).
• Substance abuse.
• Diagnosis of a mood disorder such as major depressive disorder and bipolar disorder.
• Postmenopausal status.
• Intellectual developmental disability.

3. Regular Screening Is Key

Only about 11% of people taking antipsychotic medications receive regular screenings for TD. The American Psychiatric Association recommends screening at every visit using tools like the AIMS exam. These assessments can be done both in person and via telehealth—and research shows telehealth can be just as reliable for spotting the uncontrolled movements seen in TD. Screening may be done more frequently if a patient is considered higher risk, based on risk factors such as a patient taking an antipsychotic for adjunctive or add-on treatment for major depressive disorder. In one study, TD was more likely to be assessed when a caregiver was present during a telehealth visit. It is important for those taking antipsychotic medications to advocate for screening, especially if they or a loved one notices any abnormal movements.

AI powered tools such as TDScreen can make it easier to catch signs of TD early—right from a smartphone or laptop. –Desiree Matthews, Psychiatric Nurse Practitioner.

One way TD screening is advanced is through the use of artificial intelligence (AI) and video-based technology. Videra Health's TDScreen is an AI-powered tool in which patients can be screened at home with a webcam or cellphone camera. It takes less than five minutes to complete and the results are securely transmitted to their health care provider for review, helping clinicians make more informed decisions regarding diagnosis and treatment planning.

4. TD Is Not Just a Cosmetic Issue

Early detection is crucial to prevent or reduce the impact and impairment that TD can cause.

TD is a movement disorder, but its impact goes far beyond physical symptoms. Research shows that TD can seriously affect the quality of life--not just for those living with it, but also for their caregivers. People living with TD report difficulties with daily tasks like sleeping, eating, bathing, and socializing. One survey showed that individuals had to eat slowly to avoid choking because of their uncontrolled movements. In a survey of adults living with TD, the majority of individuals reported that their TD made them feel sad, irritable, anxious, or embarrassed, which can add additional burden to individuals living with a mental health condition. It is important to note that thorough TD screening, if movements are detected, should include a patient-centered approach to talking about current problems that TD may present, but also talk about how catching TD early may reduce the burden that TD can cause.

5. There Are Effective Treatment Options to Manage TD

There are two FDA approved treatment options for adults living with TD to help reduce and manage the uncontrolled movements of TD: deutetrabenazine XR and valbenazine.

Prior to 2017, limited treatment options were available to help manage the uncontrolled movements of tardive dyskinesia (TD), and there were few options that inspired hope for effective symptom control. TD may be reversible in some cases if it is caught early, appears mild, and antipsychotics can be safely discontinued under the guidance of a health care professional. Medications should not be stopped unless working with a health care professional.

Today, the most effective way to manage TD is not by stopping necessary medications, but usually by adding a treatment specifically for TD called VMAT2 inhibitors. These medications—deutetrabenazine XR and valbenazine—can help reduce abnormal movements while allowing patients to stay on psychiatric medications that are otherwise working well for them.

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What the Research Shows

Deutetrabenazine XR

• In a three-year study, two-thirds of patients saw their uncontrolled movements drop by 50% or more.
• In real-world use, over 50% of patients reported improvements in emotional and social well-being due to reduced movements.
• Most common side effects in short-term trials were nasopharyngitis (inflammation of the nose and throat) and insomnia.

Valbenazine

• In a long-term study, 59% of patients reached remission, meaning their movements were gone or minimal or nearly normal.
• After 48 weeks, nearly 9 out of 10 patients had their uncontrolled movements reduced by at least 50% or more.
• The most common side effects in short-term clinical trials were sleepiness, fatigue, or feeling tired.

Staying in the Know

It’s important to understand your risk of tardive dyskinesia (TD) if you are taking medications like antipsychotics. Ask your health care professional how often you should be screened and what to do if you notice any unusual movements between office visits. If you or a loved one notices any unusual, involuntary movements after starting an antipsychotic medication, don’t wait—talk to a health care professional. Early detection and diagnosis offer the best chance to reduce the long-term impact TD can have. TD is more common than many realize, and understanding your individual risk is an important step in protecting your health and quality of life.