Caring for a Loved One with Huntington’s Disease

When a loved one gets diagnosed with a disease like Huntington’s, you may find yourself become a primary or part-time caregiver. Whether you’re caring for them at home or enlist the help of at home care to lighten the load, it’s vital that you know how to properly care for someone with Huntington’s disease.

What is Huntington’s disease?

Huntington’s disease is a progressive brain disorder that causes uncontrolled movements, loss of cognition (thinking ability), and can cause emotional problems. It can take the form of juvenile or adult-onset Huntington’s, and effects younger and older people in different ways

People with adult-onset Huntington’s disease usually live for around 15 to 20 years after signs and symptoms develop. This disorder affects an estimated 3 to 7 per 100,000 people of European ancestry.

What are the Common Symptoms of Huntington’s Disease?

The most common form of is adult-onset Huntington’s which often appears in a person’s thirties or forties. Early signs can include irritability, depression, and trouble making decisions and learning new information.

Many people with Huntington’s disease also develop what is known as chorea; small, involuntary jerking or twitching movements. As the disease progresses, these movements become more pronounced and can lead to trouble walking, swallowing and speaking.

Due to the nature of this disease, individuals with Huntington’s disease may require specialised live in care.

Huntington’s Disease Care

If you have a loved one who’s been diagnosed with Huntington’s disease, you will be wondering the best kinds of care for them. Of course, they will want to retain as much independence as possible, and you too will want to ensure you’re getting respite whilst providing either full or part time care. As such, here are our top tips for Huntington’s disease care:

Give more time. The limitations of Huntington’s disease mean your loved one will need a little longer to communicate, eat, or walk alongside you. Be apathetic, and give them the time they need.
Avoid distractions. When communicating, try and remove distractions – such as the TV or radio. You should also encourage them to only do one thing at a time, and not expect them to walk and talk simultaneously for instance.
Consider temperature. Someone with Huntington’s disease may have difficulty regulating their body temperature. Be considerate and watch for non-verbal cues that they are too or too cold.
Ask for support. Any kind of caregiver role is tough on you and you shouldn’t have to go through it alone. At Four Oaks Health Care, our training live in carers can help take away some of the burden and give your loved one the care they need.

If you’re caring for a loved one with Huntington’s disease and want to know how at home care can help you and them, contact our team today. Our trained carers are on hand to offer you expert advice, and guide you to making the best decision for you and your loved one. You can also find out more about the support we offer across the UK using the links below.

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