Understanding Huntington's Disease

Managing Life With Huntington's Disease

Living with Huntington's disease is demanding, and as the disease progresses, the patient becomes increasingly dependent on their caregivers. Some issues to address and strategies to help with coping include eating and nutrition, managing cognitive and psychiatric disorders, and planning for residential and end-of-life care. Individuals with Huntington's disease often have difficulty maintaining a healthy body weight because of difficulty eating and physical exertion or unknown metabolic issues, so may require more than three meals a day and dietary supplements to receive adequate nutrition.

Caregivers should create a peaceful environment for the patient and employ strategies such as calendars and schedules for a routine, breaking down tasks into manageable steps, and avoiding known stressors. Residential and end-of-life care should be anticipated in the advanced stages of Huntington's disease and issues to address may include care facilities, hospice care, living wills, and advance directives. There are numerous non-profit and government agencies to help patients and their families cope with the disease.