Are you a caregiver?

You might already be one. Here’s what that can look like.

A caregiver is anyone who helps another person manage their health, daily needs, or overall well-being—often without pay. You might be a caregiver if you:

  • Help a family member, partner, friend, or neighbor with everyday tasks

  • Coordinate or attend medical appointments

  • Manage medications or health-related needs

  • Provide emotional support, check-ins, or advocacy

  • Assist with household responsibilities or transportation

  • Step in regularly because someone relies on you

If you see yourself in any of these roles, you can identify as a family caregiver—even if you’ve never used that term before. Caregiving looks different for everyone, but every caregiver plays a vital role and deserves recognition and support.

The Caregiver’s Role

Everyday Support That Makes a Difference

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.

Caregiver Resources from Our Partners

Tip Sheet

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.

Online Tool

Community & Social Support

Find help with this tool designed to easily navigate caregivers to the support they need, including Youth Services, a Resource Library and a Helpline.

Online Tool

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.

VIDEO

Video Trainings

HDSA also offers video trainings on group facilitation, managing conversations, confidentiality, and more.

ORGANIZATION

Get Support & Resources

HDYO offers resources, guides, peer support, and connection for younger persons, siblings, and other family members touched by HD.

ORGANIZATION

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).

ORGANIZATION

Resource for Community & Family Members

The Huntington Study Group maintains educational materials and supportive content tailored to families affected by HD.

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

Caregiver Action Network Resources

  • Huntington’s Disease Caregiver Video Resource Center
    [filtered_categories allowed="Article, Caregiver Story, Featured Tool, Partner Resource, Podcast, Resource, Video Story, Webinar" exclude="Uncategorised" limit="7" f_size="16px" color="#fff"]

    Huntington’s Disease Caregiver Video Resource Center

  • [filtered_categories allowed="Article, Caregiver Story, Featured Tool, Partner Resource, Podcast, Resource, Video Story, Webinar" exclude="Uncategorised" limit="7" f_size="16px" color="#fff"]

    Understanding Caregiver Burnout and Compassion Fatigue

  • Take Care of Pain: An Initiative for Pain Education
    [filtered_categories allowed="Article, Caregiver Story, Featured Tool, Partner Resource, Podcast, Resource, Video Story, Webinar" exclude="Uncategorised" limit="7" f_size="16px" color="#fff"]

    Take Control of Pain: An Initiative for Pain Education

  • Caregiver Action Network Family Caregiver Toolbox
    [filtered_categories allowed="Article, Caregiver Story, Featured Tool, Partner Resource, Podcast, Resource, Video Story, Webinar" exclude="Uncategorised" limit="7" f_size="16px" color="#fff"]

    The Family Caregiver Toolbox

  • National Caregiver Help Desk
    [filtered_categories allowed="Article, Caregiver Story, Featured Tool, Partner Resource, Podcast, Resource, Video Story, Webinar" exclude="Uncategorised" limit="7" f_size="16px" color="#fff"]

    National Caregiver Help Desk

Explore Your Community Support Options

Personalized Guidance from Caregiving Experts

Personalized Guidance from Caregiving Experts

Available Monday-Friday from 8am – 7pm ET, our experts are ready with the personalized support, guidance, and assistance you need and deserve–for as long as you need it.

(855) 227-3640

24/7 Access to Hundreds of Helpful Resources

24/7 Access to Hundreds of Helpful Resources

The National Caregiver Help Desk App, powered by Carallel, is full of bite-sized resources crafted to help you build skills, validate what you’re feeling, and help you get stuff done.

Use Access Code: CAN

Connection & Community with Other Caregivers

Expert-Led Virtual Fireside Chats

These 30-minute virtual fireside chats address the complex and often difficult topics encountered by caregivers. Sessions are led by Matt Perrin, Carallel’s Director of Caregiver Engagement, and Sheila Schultz, a Carallel Care Advocate.

Community with Other Caregivers

Community With Other Caregivers

Through CAN, Carallel Support Groups give you a place to ask questions, feel understood, and build confidence in your caregiving journey. Access is simple and available when you need it.

Certified Listeners

Connect with Certified Listeners

Looking for someone who really gets it? Get matched with trained listeners who share your lived experience—whether that’s caring for someone with Alzheimer’s, cancer, or another chronic condition.

Facebook Support Group for Caregivers

Online Support Group on Facebook

Join our caregiver community on Facebook to connect with thousands of peers in a welcoming, supportive space.
Ask questions, share experiences, and receive advice any time of day.

We’re meeting caregivers where they are—giving you choices for how you want to connect, whether through expert advice, peer-to-peer empathy, or live support groups.