Care partner support

Help your loved one while also taking
care of yourself

An important step when caring for someone with Huntington’s
disease (HD) and chorea is finding time to care for yourself.¹

The impact of Huntington’s disease (HD) and HD chorea affects not only the
person experiencing unintentional movements, but also their care partners and
everyone close to them.

Why self-care is so important⁠^1-3

It may feel easier to focus only on care partner responsibilities or you may feel too drained to devote time to yourself. However, looking after your own needs as well may have practical benefits.

Balance: Balance the demands of your day by carving out time to do enjoyable things like taking a walk or having coffee with a friend
Health: Looking out for your own physical health may better position you to be more present for the person with HD chorea in your life
Motivation: Self-care can help you process the challenges of caring for someone with HD, helping with motivation and confidence

Start small⁠^1,2

Consider an approach to self-care that
reserves a few minutes each day for
simple activities such as:

Walk around the block
Exercise
Listening to music
Reading one book chapter
Meditate
Do a crossword puzzle or
play a mobile game

Lean on others⁠^1-4

Opening up to others about caring for someone with HD chorea may help you manage your emotions, expand your support system,
and release feelings of tension or stress.
Some places to start:

Voice your feelings
Help others understand HD chorea and why caring for someone with HD takes so much of your time and energy
Keep people updated on the latest information so they can provide the best support
Accept offers of help. Dedicate this newfound time to doing something
for yourself
Accept that not everyone may be
able or willing to help you

Additional support

Connect with fellow caregivers online by visiting the sites below to learn more about Huntington's disease.

Stay in the know

AUSTEDO^® XR (deutetrabenazine) extended-release tablets and AUSTEDO^® (deutetrabenazine) tablets are prescription medicines that are used to treat:

the involuntary movements (chorea) of Huntington’s disease. AUSTEDO XR and AUSTEDO do not cure the cause of the involuntary movements, and it does not treat other symptoms of Huntington’s disease, such as problems with thinking or emotions.
movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia).

It is not known if AUSTEDO XR and AUSTEDO are safe and effective in children.

AUSTEDO XR and AUSTEDO can cause serious side effects in people with Huntington’s disease, including: depression, suicidal thoughts, or suicidal actions. Do not start taking AUSTEDO XR or AUSTEDO if you are depressed (have untreated depression or depression that is not well controlled by medicine) or have suicidal thoughts. Pay close attention to any changes, especially sudden changes, in mood, behaviors, thoughts or feelings. This is especially important when AUSTEDO XR or AUSTEDO is started and when the dose is changed. Call your healthcare provider right away if you become depressed, have unusual changes in mood or behavior, or have thoughts of suicide.

Do not take AUSTEDO XR or AUSTEDO if you:

have Huntington’s disease and are depressed or have thoughts of suicide.
have liver problems.
are taking reserpine. Do not take medicines that contain reserpine with AUSTEDO XR or AUSTEDO. If your healthcare provider plans to switch you from taking reserpine to AUSTEDO XR or AUSTEDO, you must wait at least 20 days after your last dose of reserpine before you start taking AUSTEDO XR or AUSTEDO.
are taking a monoamine oxidase inhibitor (MAOI) medicine. Do not take an MAOI within 14 days after you stop taking AUSTEDO XR or AUSTEDO. Do not start AUSTEDO XR or AUSTEDO if you stopped taking an MAOI in the last 14 days. Ask your healthcare provider or pharmacist if you are not sure.
are taking tetrabenazine. If your healthcare provider plans to switch you from tetrabenazine to AUSTEDO XR or AUSTEDO, take your first dose of AUSTEDO XR or AUSTEDO on the day after your last dose of tetrabenazine.
are taking valbenazine.

Other possible serious side effects include:

Irregular heartbeat (QT prolongation). AUSTEDO XR and AUSTEDO increases your chance of having certain changes in the electrical activity in your heart. These changes can lead to a dangerous abnormal heartbeat. Taking AUSTEDO XR or AUSTEDO with certain medicines may increase this chance.
Neuroleptic Malignant Syndrome. Call your healthcare provider right away and go to the nearest emergency room if you develop these signs and symptoms that do not have another obvious cause: high fever, stiff muscles, problems thinking, very fast or uneven heartbeat, or increased sweating.
Restlessness. You may get a condition where you feel a strong urge to move. This is called akathisia.
Parkinsonism. Symptoms include: slight shaking, body stiffness, trouble moving, trouble keeping your balance, or falls.

Sleepiness (sedation) is a common side effect of AUSTEDO XR and AUSTEDO. While taking AUSTEDO XR or AUSTEDO, do not drive a car or operate dangerous machinery until you know how AUSTEDO XR or AUSTEDO affects you. Drinking alcohol and taking other drugs that may also cause sleepiness while you are taking AUSTEDO XR or AUSTEDO may increase any sleepiness caused by AUSTEDO XR and AUSTEDO.

The most common side effects of AUSTEDO in people with Huntington’s disease include sleepiness (sedation), diarrhea, tiredness, and dry mouth.

The most common side effects of AUSTEDO in people with tardive dyskinesia include inflammation of the nose and throat (nasopharyngitis) and problems sleeping (insomnia).

The most common side effects of AUSTEDO XR are expected to be similar to AUSTEDO in people with Huntington’s disease or tardive dyskinesia.

These are not all the possible side effects of AUSTEDO XR or AUSTEDO. Call your doctor for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please read the accompanying Medication Guide.

References:

1. Taking care of you: self-care for family caregivers. Family Caregiver Alliance. Accessed January 24, 2024. https://www.caregiver.org/taking-care-you-self-care-family-caregivers

2. Care for the Family Caregiver: A Place to Start. National Alliance for Caregiving; 2010. Accessed January 24, 2024. https://www.caregiving.org/wp-content/uploads/2020/05/Emblem_CfC10_Final2.pdf

3. Downing NR, Gaba A, Gorsky SL, et al. A Caregiver Guide for HD Families. Huntington’s Disease Society of America; 2016. Accessed January 24, 2024. http://hdsa.org/wp-content/uploads/2016/05/HDSA_CaregiverGuideFamilies_Final.pdf

4. Talking about HD with family and friends. Huntington’s Disease Youth Organization. Accessed January 24, 2024. https://en.hdyo.org/a/387-talking-about-hd-with-family-and-friends

Care partner support

Help your loved one while also taking care of yourself

An important step when caring for someone with Huntington’s disease (HD) and chorea is finding time to care for yourself.1

Why self-care is so important⁠1-3

Start small⁠1,2

Lean on others⁠1-4