Whether someone you know already has tardive dyskinesia (TD) or they're at risk for it because of a medicine they take, you might wonder how you can help. People who have this movement disorder need a lot of extra support.
TD causes uncontrollable, repeated movements of the face, neck, arms, and legs. TD symptoms don't always go away after someone stops taking the medicine that caused it. Sometimes the movements are permanent. That’s why someone who has TD may need help adjusting to life with this condition.
Caring for someone with TD can be challenging, but it will get easier once you learn more about the condition and how to respond. You can help your loved one manage their condition and cope with the stresses of TD.
Get to Know TD
Often caregivers aren't aware of TD before their loved one is diagnosed. Understanding TD, what causes it, and what it looks like can help you be a better support person.
TD is a disorder that causes involuntary movements of the face and body. Someone with TD might blink their eyes, smack their lips, twist their neck, or flap their arms over and over again.
These movements are a side effect of taking certain medicines for many months or years. Most often it affects people who take antipsychotic medicines for mental illnesses like schizophrenia and bipolar disorder.
TD can also be a side effect of medicines that treat:
- Depression and anxiety
- Parkinson's disease
Find out which medicine your loved one is taking so you'll know whether to watch for symptoms. You might also want to ask their doctor what to expect.
Recognize the Symptoms
Early TD symptoms can be so mild that they're easy to miss. Because prompt diagnosis and treatment get better results, watch for symptoms like these:
- Eye blinking
- Lip smacking
- Making chewing motions with their mouth
- Puffing out their cheeks
- Hand waving
Muscle spasms in the chest can affect your loved one's ability to breathe and swallow. They might grunt or make other noises, too.
While you don't want to worry the person, you do want to make them aware of the symptoms and suggest they see their doctor. Be gentle when you mention the movements. Some people aren't comfortable talking about their symptoms. They might also worry that their doctor will take away a medicine they need for their mental health, but that’s not necessarily what will happen.
TD symptoms can change from day to day. Watch closely for any new movements or existing ones that are getting worse. Mention these symptoms to the doctor. If the movements are hard to describe, ask your loved one if you can make a video to share with their doctor.
Learn the Other Effects of TD
TD isn't just about movements. It affects many aspects of a person's life — their body, their emotions, and their relationships. The movements can make it harder to eat, get dressed, work, and do other daily tasks.
On top of that, TD can complicate mental health treatment. Your loved one might have to switch or adjust a drug that they need to manage the symptoms of a mental health condition. This can cause distress.
TD can make your loved one feel tired, depressed, and anxious. They might stay away from friends and family or avoid going out in public because they're afraid people will stare.
You can help by supporting them and listening to their concerns. Also watch for any changes in their emotional state. Share your observations with their doctor and other members of their care team.
Offer to Help
The repetitive movements of TD can tire your loved one out. Ask what they can't do on their own and offer to help when you can. You might cook, clean, grocery shop, or watch their children to give them extra time to rest.
Plan for the Future
Managing TD is sometimes a moving target. Treatments may need adjustment as symptoms change.
The outlook is hard to predict. Some people fully recover after they stop or change the medicine that caused TD. Others continue to have symptoms. The movements might even get worse over time.
Your loved one is more likely to have a positive outcome with early treatment. Encourage them to see a doctor and stick with their treatment plan to manage TD.
Take Time for Your Own Needs
Caring for someone with TD affects you, too. Caregivers say this disorder makes it harder for them to get anything done or take care of themselves. Take time every day for self-care. Eat a nutritious diet. Take a walk or do other types of exercise. Give yourself enough time to sleep each night.
Don't overload yourself with caregiving. Set aside time every day to do something just for you. Watch a movie. Have lunch with a friend. Take a few minutes to just relax with a good book or do some deep breathing exercises.
Many caregivers feel frustrated, angry, or embarrassed by their loved one's movements. You might want to ignore these feelings. But if you neglect your own needs and emotions while caregiving, you could get burned out.
If you feel overwhelmed, reach out for help. Join a caregiver support group. Talk to a therapist or other mental health professional. Or lean on your own support system, such as your friends, family and partner.
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