Caring for Someone with Huntington’s Disease: What to Do and Expect

If a loved one has been recently diagnosed with Huntington’s disease and you’re called to step in and help care for them, you may have a lot of questions about what to expect. In this article, we’ll break down the complexities of caring for someone with Huntington’s disease, including the stages and some of the daily needs you’ll want to consider for their comfort and safety. Let’s dive in.

The Stages of Huntington’s Disease

Huntington’s disease (HD) is a disorder inherited through your bloodline. It causes nerve cells (neurons) in certain parts of the brain to gradually break and die, mostly affecting the parts of the brain that control voluntary movement.

As the disease progresses, people develop:

Uncontrollable dance-like movements (chorea)
Abnormal body postures
Problems with behavior, emotion, thinking, and personality.

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Your responsibilities while caring for a loved one with Huntington’s disease will change over time. However, not all changes have to be unexpected. By reading and learning as you’re doing now, you can form a more solid idea of what to expect with the stages of Huntington’s disease. So let’s check those out next.

Early stage Huntington’s Disease (HD)

During early stage HD, your loved one may experience symptoms like:

Clumsiness
Moodiness
Difficulty with processing complex thoughts

But most of the physical symptoms this disease is known for will not yet inhibit their daily life. For the most part, a regular physical exercise, strength, and balance routine can help stave off the worst of the symptoms in this stage.

Middle stage HD

During the middle stage of Huntington’s disease, an individual starts losing some control over their movements. The first things they may start to have trouble with include:

Working
Driving
Balance
Doing household chores
Running errands
Swallowing

Physically, they may also start to show signs of weight loss. Emotionally, they may begin to feel isolated.

End stage HD

During end-stage Huntington’s disease, your loved one will have a hard time getting out of bed – they will need near around-the-clock care.

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Daily Needs to Consider for Someone with Huntington’s Disease

Now that you know what to expect from the disease, both now, and as it progresses, let’s discuss the needs the disease will cause that you can counter with care.

Home Safety

Voluntary movement control is a huge part of what keeps us balanced and upright as we maneuver through our environments. As such, Huntington’s disease creates home safety concerns that you may not have considered. To prevent falls, it’s a good idea to:

Remove tripping hazards from high-traffic/movement areas, including cords, rugs (especially those with edges warped upward), or decor.
Where rugs are needed, ensure they’re slip-resistant to help maintain grip.
Rearrange any furniture that feels in the way – make the room flow to the best of your ability to ensure maximum movement and accessibility.
Keep rooms free of clutter – dog’s and children’s toys, for example, can easily create a tripping hazard if not kept tidy.

Personal Care

As the disease progresses to the middle and end stages, your loved one’s personal care needs will grow. Here are some things to consider helping them with:

Getting around (both at home and driving outside of the home)
Scheduling and attending appointments
Filling and taking prescription medications according to the prescription instructions
Cooking, planning, and eating meals
Personal grooming tasks like bathing/hygiene and dressing
Maintaining healthy habits, like a social calendar with friends and family and an exercise program

Emotional Considerations

Finally, it’s important to understand that both you and your loved one will be going through an emotional transition through Huntington’s disease. You may want to consider seeking out emotional care through professional services, support groups, Facebook groups, and/or friends and family.

Closing Thoughts

Huntington’s disease is a terrifying diagnosis, both for the loved one affected and those around them. Taking time to learn about the disease, what to expect, and how to help is the best way to help.

If you’re providing care for a loved one with Huntington’s disease, the California Caregiver Resource Centers are here to support you. We are a non-profit network of 11 Centers that support caregivers across the state of California. Every county in the state is covered.