Caregiving doesn’t pause—and neither does the importance of having the right support. Caregiver Action Network (CAN) is here year-round to help you find trusted information, supportive communities, and practical tools that make each day a little more manageable. Whether you’re caring for a loved one today, tomorrow, or any time of year, connection and support can make all the difference.

The Caregiver’s Role

Huntington’s disease is a hereditary, progressive neurological disorder that affects movement, cognition, and behavior. Over time, individuals may develop involuntary movements (chorea), difficulty with speech/swallowing, memory decline, mood changes, and executive functioning challenges. Caregivers are often called upon to adapt constantly—providing help not only with mobility or safety, but also with emotional support, communication, supervision, and planning for later stages. Because HD affects multiple domains, caregivers of people with HD must balance flexibility, education, self-care, and advocacy.

huntingtons disease

Top 3 Things Caregivers Should Know

Behavioral, Cognitive, and Psychiatric Symptoms Are as Important as Movement

Alongside motor changes, HD often brings changes in mood, impulse control, irritability, apathy, diminished insight, or psychosis. Caregivers will need to navigate challenging behaviors, support emotional health, and coordinate psychiatric care.

Progression Is Gradual but Relentless; Planning Matters

As HD advances, individuals may struggle with swallowing, feeding, speech, mobility, and full dependence. Having advance care plans, long-term care options, legal/financial safeguards, and staged transitions can reduce crisis.

Caregivers Are at Risk, Too—Self-Care & Support Are Essential

The emotional, physical, and psychological toll is high. Without rest, peer connection, respite, or counseling, caregiver fatigue, burnout, or distress is likely. Recognizing your own limits and seeking support early is vital.

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Caregiver Action Network

This resource was developed with support from Huntington’s Disease Society of America, Huntington’s Disease Youth Organization, and Movement Disorder Policy Coalition.