Caregiving for Tardive Dyskinesia

Tardive dyskinesia (TD) causes abnormal and involuntary movements that can affect one or more parts of the body, including the head, face, neck, lips, or tongue. It can also cause involuntary movements of the hips, limbs, arms, legs, and torso. TD often develops after the prolonged use of medications for mental health conditions and other disorders.

Aside from having to take care of someone’s needs, caregivers have to keep an eye out for changes in their loved one's symptoms and speak to healthcare providers on their behalf. Staying on top of all these responsibilities can sometimes lead caregivers to neglect their own physical and mental health.

In this article, we'll discuss how caregivers for people with TD can help their loved ones as well as take care of themselves.

man comforting wife at home

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Mental and Physical Effects of Caregiving

Caring for someone with TD can have physical and mental health effects. Feelings that caregivers may experience include:

  • Frustration and anger
  • Anxiety
  • Embarrassment
  • Isolation and loneliness
  • Depression
  • High levels of stress
  • Loss of self-identity, self-worth, and self-esteem

One of the most challenging aspects of caring for someone with TD is handling people who have not heard of the condition or are unaware of its effects.

Caregivers want to provide the best care possible and avoid making their loved ones feel ashamed, embarrassed, or stigmatized. However, because other people's reactions are out of their control, it can be difficult for caregivers to navigate these interactions.

There are also physical effects of caregiving. Caregivers can experience:

  • Chronic health conditions or disability
  • Increased risk of developing heart disease, cancer, diabetes, and arthritis
  • Headaches
  • Nonspecific body aches and pains
  • Acid reflux
  • Obesity
  • A weakened immune response that can lead to frequent infections
  • Slower wound healing
  • Loss of physical health because of less time for physical activity
  • Fatigue

According to the Family Caregiver Alliance, roughly 11% of caregivers report that their physical health diminished while they were caring for a patient or loved one. Between 40% and 70% of all caregivers experience symptoms of depression.

Tips on Caregiving for Tardive Dyskinesia

When you care for someone, whether they are a family member or a patient, you may feel guilty when you get tired or frustrated. It’s normal to experience these emotions while taking care of someone else.

If you find yourself feeling overwhelmed when you are caring for someone with TD, you might find some of these tips helpful.

Watch for Signs and Symptoms

It can be hard for people with TD to see and monitor their symptoms. As a caregiver, it's important that you know what to look for and are watching carefully. When you're monitoring your loved one, you're likely to catch the signs, such as involuntary tremors or tics, when they first develop.

When keeping an eye on a loved one with TD, changes that you should look for include:

  • The frequency of their movements
  • Any new or recurring symptoms
  • An increase in how disturbed your loved one is by their movements

If any of these signs develop, it’s likely that the condition is getting worse and your loved one should see their provider.

Learn About TD-Causing Drugs

If you are caring for a loved one who is taking certain medications for a mental health condition such as bipolar disorder or schizophrenia, know that these medications might make them more likely to develop TD. Examples of medications that are linked to TD include:

Communicate With the Healthcare Team

It’s absolutely crucial to have open lines of communication with your patient or loved one’s healthcare team. You will need to stay up to date on all their treatments, diagnosis, and other changes that could affect how you care for them.

It can help to keep detailed notes of their symptoms, signs of progression or regression, and any other changes that will help a healthcare team monitor your loved one's or patient's condition.

Reach Out for Support

Support groups can be found on many different online networks such as Facebook’s Tardive Dyskinesia Bully Free Support Group or the website Talk About TD.

These online resources can connect you with people who are in a similar situation, which can help ease your feelings of isolation. It also gives you the opportunity to learn and share tips for caring for someone with TD.

You can also ask the healthcare team in charge of your loved one’s treatment about support resources for caregivers near you.

Taking Care of Yourself

Studies have shown that while it is beneficial for patients to live with their loved ones, people who look after others may experience mental, physical, and financial stress. Caregivers may neglect their own health and well-being when looking after someone with a chronic condition.

Taking care of yourself could involve many things, such as:

  • Getting enough sleep
  • Exercising regularly
  • Eating nutritious food
  • Practicing stress reduction techniques

A Word From Verywell

Caring for someone with tardive dyskinesia (TD) comes with a lot of responsibility. It can be hard for people with TD to monitor their symptoms, which means that you will need to keep an eye on them and let their healthcare team know about any changes. You may also need to handle interactions with other people who do not know about or understand TD, which can be challenging.

Being a caregiver can have physical and mental health effects. That's why it's important that you are aware of these effects and develop strategies to prevent or lessen them. Remember that taking care of yourself is an important component of caring for someone else.

Frequently Asked Questions

  • What are the long-term health consequences of caregiving?

    Research has shown that caregiving for a long time can lead to depression, high levels of stress and anxiety; an increased risk of substance and alcohol use disorders; and an increased risk of physical symptoms such as headaches, chronic pain, and acid reflux.

  • Can I hire a professional caregiver?

    Having someone else to help care for your loved one may mitigate the physical and mental effects of being a caregiver. Hiring a professional caregiver can be an option for people who have the financial means to do so.

  • Does tardive dyskinesia ever go away?

    There is no cure for tardive dyskinesia and it cannot always be avoided. For example, patients taking a medication that causes TD may not be able to stop taking the medication. Some people who develop the disorder will have it for the rest of their lives.

5 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Farrar M, Lundt L, Franey E, et al. Patient perspective of tardive dyskinesia: results from a social media listening study. BMC Psychiatry. 2021 Feb 15;21(1):94. doi:10.1186/s12888-021-03074-9

  2. Family Caregiver Alliance. Caregiver health.

  3. Cutler AJ, Caroff SN, Tanner CM, Shalhoub H, Lenderking WR, Pagé V, Franey E, Yonan C. Caregiver-Reported Burden in RE-KINECT: Data From a Prospective Real-World Tardive Dyskinesia Screening Study. J Am Psychiatr Nurses Assoc. 2021 Jun 22:10783903211023565. doi:10.1177/10783903211023565

  4. Cornett EM, Novitch M, Kaye AD, Kata V, Kaye AM. Medication-Induced Tardive Dyskinesia: A Review and Update. Ochsner J. 2017 Summer;17(2):162-174.

  5. Swartz K, Collins LG. Caregiver Care. Am Fam Physician. 2019 Jun 1;99(11):699-706.

By Angelica Bottaro
Angelica Bottaro is a professional freelance writer with over 5 years of experience. She has been educated in both psychology and journalism, and her dual education has given her the research and writing skills needed to deliver sound and engaging content in the health space.