CarING for a loved one with tardive dyskinesia (TD)

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The impact of TD isn't limited to people who have it. As a caregiver, it may be up to you to let your loved one know they could be experiencing symptoms of TD. This page offers reminders, tips, resources, and community support to help guide you.

It’s a helpful reminder that your loved one:

  • May not be aware that their uncontrollable movements are TD
  • Might not want to seek help because they don’t understand what’s happening with their body

If you notice any of the signs or symptoms of TD, it’s ok to speak up. TD is unlikely to get better on its own, so help them take the first step: Understand the cause of their uncontrollable movements and learn about treatment.

Start a discussion

Below are some helpful discussion topics and tips to talk to your loved one about their uncontrollable movements:

  • Bring up your loved one’s uncontrollable movements in a private, comfortable setting
  • Start off by informing your loved one about what you have noticed
  • Ask them if they have noticed any uncontrollable movements
  • Ask if others have noticed these movements
  • See how they are feeling about their jerky movements
  • Ask if their work, social life, or daily routine has changed because of their movements

Share what you see

One way to help your loved one may be to ask if you may record a video of their uncontrollable movements so they can share the video with their healthcare provider during an in‑office or telehealth appointment.

Have a loved one in a long‑term care facility?

Any person who has taken antipsychotics may be at risk for TD. If your loved one lives in a long‑term care facility, you may not always be around, but there are ways to support and advocate for your loved one at risk for TD or living with TD.

  • Get to know the staff and your loved one’s care team to establish trust and a point of contact so you can better advocate for your loved one
  • Use a resident assessment or care plan meetings to discuss your loved one’s medication history (including antipsychotic use) and screening for TD
  • When visiting and spending time with your loved one, make note of any uncontrollable movements and share them with the care team
  • Ask the care team to look out for any movements and how they may be impacting your loved one physically, socially, or emotionally
  • If movements are noticed, ask your loved one if they are affecting how they are eating, walking, or interacting with other residents

Kim (right), care partner of Amy, and Amy (left), real patient with TD

“I’m glad I said something to Amy about her uncontrollable movements, because even though she was doing it, she had no clue she was doing it. If we didn’t discuss it, we never would’ve made it to where we are now, and learned about INGREZZA.”

– Kim (right), care partner of Amy

Kim and Amy were compensated by Neurocrine Biosciences, Inc. to share their stories

HelpING your loved one start and stay on track with treatment

As a care partner, you can help your loved one take control by encouraging them to talk to their healthcare provider about TD treatment.

Start by askING if INGREZZA could be right for them. INGREZZA is a treatment proven to reduce TD that’s always one capsule, once daily, and #1 prescribed.

Here are some additional ways you can stay engaged to support your loved one on their treatment journey:

Join your loved one at their next appointment—you can help them better understand and remember their healthcare provider’s instructions

Call or email your loved one’s healthcare provider (if it’s an option) and ask them to repeat or explain any information your loved one didn’t understand

Get the most out of treatment by signing up to receive emails about INGREZZA

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FindING TD care partner info and support

How to Support a Loved One with TD
WebMD

TD Caregiver Stories and Videos
Caregiver Action Network

Providing Emotional Support for a Loved One with TD
Sharecare

Does your loved one have trouble swallowing pills?

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