How to Care for Someone With Huntington's Disease

Huntington’s Disease is an unpreventable disorder caused by a faulty gene on chromosome 4. The faulty gene causes brain damage and gradually leads to mental, emotional, and physical dysfunctions. The person may be a family member or friend but will be referred to as the patient in this article. Here are some ways you can help take care of someone with Huntington’s Disease.

Things You'll Need

• - An understanding of Huntington’s Disease
• - A desire to help and support the patient

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Instructions

• 1

  Understand the progression of the symptoms. The patient with Huntington’s Disease starts out with symptoms such as a lack of concentration; stumbling and clumsiness; depression; short-term memory lapses; slight, uncontrollable muscular movements; and changes of mood. This can be very frustrating to the patient since he does not have complete control over his body. The symptoms progressively worsen and the patient will begin to experience difficulty in speech and swallowing; involuntary movements; weight loss; frustration; and stubbornness. Understanding what the patient is going through is the first step to being able to help him.

• 2

  Start with a neurologist. The patient will eventually meet with genetic specialists, psychologists, psychiatrists, and other specialists, but he or she needs to initially meet with a neurologist. Be there to transport the patient to the doctor’s office and find out from the doctor how to manage the patient’s symptoms.

• 3

  Repeat words back to the patient. Due to the progressive nature of Huntington’s Disease, the patient will eventually have a hard time communicating through language. Listen closely to what the patient is saying and repeat back to the patient some of the words she was trying to communicate to you. This will help to cut down on some of the patient’s frustration with being unable to communicate clearly and effectively. It will also let the patient know that you care and are there to help her through this. Speech therapy may also help the patient to express her thoughts through words.

• 4

  Incorporate a daily exercise program. It is important for the patient to exercise daily, which will help her do better both mentally and physically as the disease progressively worsens. Even if the patient has poor coordination, it is important for her to walk each day, whether it is alone or with your help. Wearing sturdy shoes or weights on the ankles (helps with stability) can help the patient walk with more ease and success.

• 5

  As the disease progresses, it becomes difficult for the patient to eat and swallow. Occasionally the patient will choke on his food. Be sure you give the patient plenty of time to eat. You can cut the food into small pieces, puree it, or soften it so the patient has an easier time chewing and swallowing. The use of plates with suction cups or cups with lids can be helpful to those with physical disabilities.

• 6

  Give the patient healthy food. Good nutrition is important. You may supplement with vitamins as well. If chewing and swallowing is too difficult for your patient, you may have to consider feeding him with a feeding tube.

• 7

  Give the patient lots of water. You want to prevent dehydration in your patient. Be sure to give him lots of water. Bendable straws can help the patient drink the water more easily.

• 8

  Huntington’s Disease can greatly impact the patient’s abilities to make decisions, reason, or handle other responsibilities. He may need help in their legal affairs. Wills and other important documents should be drawn up early before the individual can no longer represent himself.

• 9

  Look into getting part-time help inside the home. Helping the patient all by yourself can be exhausting, so think about hiring some part-time help to help out with the patient or household chores. Check state or federal agencies and find out what meal programs, nursing assistance, or occupational therapy services they may offer.

• 10

  The patient may still have a desire to participate in hobbies and activities outside the home. Check out local community centers or therapeutic community centers to find out what activities they offer and keep your patient busy and occupied with things he enjoys.

• 11

  Taking care of a person with Huntington’s Disease is very demanding and can be exhausting and frustrating. Make sure you get some time to yourself as well, even if it means hiring some part-time help. Don’t ever give up.