SUPPORT & RESOURCES FOR
CAREGIVERS
Huntington’s disease chorea doesn’t just affect people with HD—it affects those who live with and care for them as well. Because HD is a progressive disease, the demands of caregiving can feel overwhelming.
As you do this important work, it’s important to remember to take time to care for yourself too. Taking care of yourself will help you better care for your loved one.
Self-care activities include:
- Maintaining a healthy sleep schedule
- Eating well
- Exercising
- Taking time to do something nice for yourself daily—even if it’s just having a cup of tea
- Doing something you enjoy
- Keeping in touch with friends
- Staying in touch with yourself and how you feel—don’t dismiss your feelings
Caring for a loved one with HD chorea
As your loved one’s HD chorea progresses, it will become more and more difficult for him or her to complete activities of daily living unassisted. At each stage, you, other family members, and your loved one’s healthcare providers should have active discussions about how much supervision is necessary, and what modifications are most appropriate and helpful.
Some ways that you can help your loved one include:
- Trying to follow a consistent daily routine—this can help with memory difficulties and reduce stress
- Organizing the home in a way that makes sense to your loved one, especially as he/she may begin to struggle with memory difficulties
- Encouraging your loved one to talk with their healthcare provider about treatment options that may help control their HD chorea
Medication management
As a caregiver, part of your role includes helping your loved one manage his or her medications.
Some ways to help your loved one stay on track with treatment include:
- Keeping INGREZZA® (valbenazine) capsules or INGREZZA® SPRINKLE (valbenazine) capsules in the same place so you both know where it is
- Asking if you may record your loved one’s HD chorea movements to share with their healthcare provider and note if anything changes
- Talking to your loved one's healthcare provider about any concerns and questions you have
- Reminding your loved one to take INGREZZA as instructed by their healthcare provider—for some people, INGREZZA may work more gradually
- Calling the specialty pharmacy if they haven’t contacted you when it’s time to refill your loved one’s INGREZZA prescription
Does your loved one have trouble swallowing pills?
Helpful organizations
The following organizations can provide additional information about HD, opportunities to connect with HD and movement specialists at Centers of Excellence, as well as other helpful tips and resources for patients and caregivers living with HD chorea.
$0 copay program can make INGREZZA out-of-pocket costs for eligible patients less expensive than generics.*
* This offer is valid only for patients with commercial (nongovernment-funded) insurance. Additional terms and conditions apply.
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