Huntington's Disease

Supportive Management

The supportive management of individuals with HD includes a number of special considerations. For example, speech therapy may be helpful in improving a patient's ability to communicate. It is also advised that caregivers seek advice from a speech or language pathologist to learn about strategies for communicating appropriately with patients. Such strategies may include reducing distractions, speaking slowly, repeating patients' words back to them to ensure that their points have been understood, using questions that may be answered simply with "yes" or "no," using facial expressions and gestures, providing feedback, and using additional communication aids. In addition, although patients with advanced disease may cease to speak, they maintain the ability to understand conversation. Therefore, it is important for caregivers to continue communicating with patients through all stages of their disease.

Special measures may also be necessary to ensure that patients receive necessary nutrients, have a sufficient intake of fluids, and maintain an adequate weight. Such measures may include increasing the number of daily meals; providing appropriate nutritional and vitamin supplements (as recommended by the patient's physicians and other appropriate healthcare providers); or assisting the patient with meals. For some, caloric intake must reach 4000-5000 calories per day. Due to increasingly impaired coordination, patients often have difficulties feeding themselves and may have an increased risk of choking. Therefore, caregivers may assist patients during meals by cutting up or softening certain foods; avoiding serving certain foods that may increase the risk of choking; and using special utensils. The decision may be made to institute feeding directly into the stomach by means of gastrostomy. Some patients may be fed through a nasogastric tube, during which liquid nutrients are delivered directly to the stomach via a tube inserted through the nose. Physicians may also recommend certain measures that may help to prevent or manage swallowing difficulties, incontinence, or constipation.

Ensuring that patients remain as physically fit as possible may be helpful in improving overall quality of life. Although patients may have increasingly impaired coordination and associated difficulties walking, they should be encouraged to continue walking as long as possible. Assistance may be provided if necessary, and caregivers must take care to remove any obstacles or take other appropriate measures to help prevent falls.

A number of resources are available to help ensure that HD patients receive appropriate care—and that caregivers obtain necessary support. Physicians, federal, state, or local health service agencies, and HD patient organizations may be able to provide information concerning community resources. These may include social and legal services; therapeutic work and recreational centers; home health care services, including occupational therapy and nursing assistance; group housing facilities; or institutional care. Although many families prefer to keep affected relatives at home, it may sometimes become necessary to consider long-term institutional care. Patient organizations may be able to provide referrals to facilities that fulfill the necessary standards for care of HD patients.