Caring for Someone with Huntington’s Disease
This article was updated on: 07/06/2017
According to the National Institute of Neurological Disorders and Stroke (NINDS), Huntington’s disease (HD) is an inherited disorder that causes brain cells (neurons) to progressively break down. This means that the symptoms of Huntington’s disease (HD) get worse over time and cause disability. The condition affects more than 30,000 Americans. If you are the primary caregiver for someone with Huntington’s disease, here’s what you should know.
What causes Huntington’s disease?
NINDS says that Huntington’s disease is caused by a mutation in the gene that normally carries the genetic code for a protein in our bodies called “huntingtin.” In a person with this genetic mutation, the code is defective and leads to an abnormally long version of the huntingtin protein. Every child of a parent who has Huntington’s disease has a 50-50 chance of inheriting the mutated or altered gene. If a child does not inherit the altered gene, he or she will not develop the disease and generally can’t pass it on. A child who does inherit the mutated gene will eventually develop the disease. A genetic test, alongside a complete medical history and neurological and lab tests, will help a physician diagnose Huntington’s disease.
What are the symptoms of Huntington’s disease?
According to NINDS, Huntington’s disease symptoms usually begin between the ages of 30 and 50, and gradually cause disability that gets worse over time. A person with may pass away within 15 to 20 years after being diagnosed.
NINDS reports that symptoms of Huntington’s disease include:
- Uncontrolled movements (chorea)
- Abnormal body postures
- Changes in behavior, emotion, judgment, and cognition (mental functioning)
People with HD might develop slurred speech and trouble eating and swallowing. They may also have trouble coordinating their body movements.
What are the treatment options for Huntington’s disease?
According to the National Institute of Neurological Disorders and Stroke (NINDS), there is no treatment that can stop or reverse the course of Huntington’s disease. Doctors may prescribe a drug called tetrabenazine to treat HD-associated chorea (uncontrolled movements). There are medications to help reduce the frequency and severity of chorea episodes and to treat anxiety and depression. Many medications used to treat the symptoms of Huntington’s disease may have unpleasant side effects such as sedation, restlessness, and hyperexcitability, so you may want to talk with your doctor or your loved one’s doctor about these medications and their side effects.
According to the Family Caregiver Alliance, there are other things that might help a person with Huntington’s disease. A physical therapist may help with early balance and walking problems and recommend strength-building exercises. An occupational therapist can give strategies to make the home safer and more livable. Because HD affects metabolism and those with the disease may burn calories at a much higher rate, a dietician can help with nutrition changes and planning meals. Also, because the ability to speak continually declines for someone with HD, a speech pathologist may be especially helpful at all stages of the disease.
What should a caregiver know about symptoms of Huntington’s disease?
According to the Family Caregiver Alliance, a person with Huntington’s disease has symptoms that fall into three areas: control of body movement, cognitive (mental) functioning, and psychological issues. Eventually, someone with HD may lose most control over body movement, which affects his or her ability to walk, and swallowing becomes more difficult, making a choking a major concern. A decline in cognitive functioning is common, but those with HD can still typically recognize their caregivers; stay aware of what’s happening around them; and provide feedback about their condition. Mild to severe depression is one of the primary complaints of people with Huntington’s disease, and some may have trouble controlling impulses and emotions, which can result in outbursts, yelling, or aggression. Other psychological symptoms are irritability and anxiety.
The Huntington’s Disease Society of America (HSDA) has grouped these symptoms according to the stage of the disease (which may be helpful for caregivers to know):
- Early stage
- Subtle changes in coordination; some involuntary movements (chorea)
- Difficulty thinking through problems
- Mood changes; depression; irritability
- Middle stage
- More involuntary movements (movement disorder may become more of a problem)
- Diminished ability to speak and difficulty swallowing
- Daily activities getting harder
- Late stage
- Chorea becoming an acute problem
- Choking becoming a major concern
- Inability to move, walk, or speak
According to the HSDA, in the late stages of Huntington’s disease, the individual is completely dependent on a caregiver for basic needs. In all stages of HD, weight loss is an important complication and can correspond with symptoms getting worse; this may be countered by adjusting the person’s diet. When a person with Huntington’s disease passes away, it is usually due to complications of the disease, such as choking or infection, and not from the disease itself.
What are some tips for a caregiver who is caring for someone with Huntington’s disease?
Here are some caregiver tips and information to help as you care for someone with Huntington’s disease (HD):
- The Huntington’s Disease Society of America (HSDA) has nutrition advice for people with HD. People with HD usually have low body weights and high caloric requirements, perhaps because their body is constantly moving. In addition, they often have difficulty chewing and swallowing food. As a caregiver, you should offer small meals six times per day and look for ways to boost calorie intake, such as: switching to whole milk or cream from skim or low-fat dairy; adding cheese, sour cream, or butter to vegetables: and providing supplement shakes between meals. Also, a brain-healthy diet with foods rich in Vitamin B12, antioxidants, and omega-3 fatty acids may help.
- The HSDA recommends using equipment to make preparing and serving meals much easier for you, the caregiver; this can include (among others) a blender/food processor, juicer, potato masher, and set of large-handled spoons and forks.
- The Family Caregiver Alliance (FCA) recommends keeping a notebook or “health journal” of all the interactions you have with health-care providers, treatments given, and medications prescribed to keep you from becoming overwhelmed with care coordination.
- The FCA recommends looking for caregiver support options in your community such as respite care and Huntington’s disease support groups; this HDSA page might help you find a support group near you. Enlist the help of other family members and friends to manage household tasks and errands, or even to sit with your loved one so you can take a break. The HDSA offers some free family and caregiver guides to help you understand the disease and find resources. View the guide here.
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For more information about caregiving and Huntington’s disease, please see:
“Huntington’s Disease”, Family Caregiver Alliance, last modified January, 2004, https://www.caregiver.org/huntingtons-disease