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Huntington's Disease: A Caregiver's Guide

• The caregiver must accept responsibility for but not control conversations. Patients should be encouraged to speak slowly. Messages should be repeated or rephrased and simplified as necessary. The caregiver should ask yes/no questions to gain clarity and should try to have an understanding of what the family member may be discussing so as to make comprehension easier. If the speaker gets distracted, he or she should be refocused. Presenting two choices instead of asking open-ended questions can help. It may become difficult not to cause frustration or anger, but the caregiver must exercise great patience to preserve equanimity. Addressing requests promptly helps prevent angry outbursts.

• Non-verbal modeling and participating in activities helps encourage patients to participate and prevents apathy. In spite of the fact that the lurching, dance-like, abnormal movements of a patient with Huntington’s disease can be awkward, making both of you feel uncomfortable, encouraging involvement in activities is important and can fight depression. Sometimes activities can be found in which your loved one can participate that will give a caregiver much-needed respite.

• Remember that in late stage Huntington’s disease, a person may not be able to verbally communicate any longer, but he or she will not have lost the ability to understand. It is at this point that it becomes critical for the caregiver to maintain communication.. He or she still has much to share, and helping them do that as well as giving them something to think about will be invaluable.

• When eating and swallowing become difficult, the caregiver should understand that eating in a peaceful environment will help. Your loved one should not be permitted to eat when he or she is upset or anxious. Good lighting will permit the food to be seen more easily. Caregivers should not talk when the family member is eating. Good posture is critical, and the patient should be encouraged to sit up straight, chin pointed to chest and head tilted down for easy swallowing. Try to remain at the table for 20-30 minutes after the meal, and keep head movements to a minimum.

• Because people living with Huntington’s disease are moving constantly, they are often very hungry. An increased calorie load means that eating several smaller meals more frequently through the day may be better than three large meals. Encourage you r love one to take smaller bites and eat smaller pieces of food. Drinking from a straw is helpful, as is eating blended, softened and pureed foods. Dry, tough and stringy foods should be avoided, and thicker liquids are easier to swallow. Caregivers should know the Heimlich maneuver.

• Keeping in mind that a person with Huntington’s has an altered sense of reality, the caregiver must think through what can be reached, how he or she will think of it, and whether or not it would be dangerous to them. 

• Install grab bars in bathtubs and shower stalls. Shower benches and flexible shower heads prolong independence. Textured strips should be put on the floor of the tub and shower for traction. Finally, raised toilet seats and handles give the patient something to hold onto.

• In the kitchen, put chemicals out of reach. Supervision is important such as making sure the stove isn’t turned on by accident. Put items to be used within easy reach, and keep the counters free of clutter.

• Minimize furniture so that your loved one doesn’t have to maneuver around it. Remove rugs and carpets where possible since they are stumbling hazards. Pre-programmed telephones make dialing easier.

• A tendency towards paranoia might mean that your loved one may try to lock you out of your home. Prevent this by installing locks that can be opened from the outside as well as the inside. Keyless entries are a good idea. For those who tend to leave home, nametags sewn inside clothing with their name and phone number are useful. Also, door alarms will allow you to know when someone is coming and going.
  
  

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