Caring for a Loved One with Huntington’s Disease (HD)

Caregiving doesn’t pause after November — and neither does the importance of staying connected to the right support. Plug-in to Care helps caregivers find trusted information, supportive communities, and practical tools that make each day a little more manageable. Whether you’re caring for a loved one this holiday season or any time of year, connection 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.

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.

Caregiving Resources

Partner Resources

Huntington’s Disease Society of America (HDSA):

> Caregiver Services and Resources — HDSA offers a wealth of tools for caregivers, including their downloadable A Caregiver Guide for HD Families. This guide was created with input from professionals and the HD community. They also provide a helpline staffed by trained social workers and chapter-based support services.

> HDSA Support Groups — Caregiver support groups (online and in-person) are organized through HDSA to allow caregivers to share experiences, gain tips, and reduce isolation. HDSA also offers video trainings on group facilitation, managing conversations, confidentiality, and more.
Huntington’s Disease Youth Organization (HDYO): Get Support and Resources — HDYO offers resources, guides, peer support, and connection for younger persons, siblings, and other family members touched by HD.
More Than HD: Caring for a Loved One with Huntington’s Disease — More Than HD provides practical articles, tips, and community perspectives specifically for HD caregivers (e.g. handling behavior changes, advocating for your loved one, caregiver self-care).
Huntington Study Group: Community and Family Members — The Huntington Study Group maintains educational materials and supportive content tailored to families affected by HD.

Caregiver Action Network

Your Loved One Has Huntington’s: Your Feelings are Normal — CAN has a page acknowledging the emotional journey of HD caregivers, offering connection and validation.
National Caregiver Help Desk — Free 1:1 Support
Family Caregiver Toolbox — Practical Resources for Caregivers
Managing Stress and Preventing Burnout — Self-Care Strategies

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

Plug-in to Care: Stay Connected

Caregiving can be complex, but you don’t have to face it alone. Plug-in to Care by connecting with trusted resources, supportive communities, and tools that help you care for your loved one — and yourself — throughout the holiday season and beyond.