Community resources for Huntington's disease

Individuals and families affected by Huntington's disease (HD) can take steps to ensure that they receive the best advice and care possible. Physicians and state and local health service agencies can provide information on community resources and family support groups that may exist. Possible types of help include:

Legal and social aid

HD affects a person's capacity to reason, make judgments, and handle responsibilities. Individuals may need help with legal affairs. Wills and other important documents should be drawn up early. This will help to avoid legal problems when the person with HD may no longer be able to represent his or her own interests. Family members should also seek out assistance if they face discrimination regarding insurance, employment, or other matters.

Home care services

Caring for a person with HD at home can be exhausting. Part-time assistance with household chores or physical care of the individual can ease this burden. Domestic help, meal programs, nursing assistance, occupational therapy, or other home services may be available from federal, state, or local health service agencies.

Recreation and work centers

Many people with HD are eager and able to participate in activities outside the home. Therapeutic work and recreation centers give individuals an opportunity to pursue hobbies and interests and to meet new people. Participation in these programs, including occupational, music, and recreational therapy, can reduce the person's dependence on family members. It provides home caregivers with a temporary, much needed break.

Group housing

A few communities have group housing facilities that are supervised by a resident attendant. They provide meals, housekeeping services, social activities, and local transportation services for residents. These living arrangements are particularly suited to the needs of individuals who are alone and need some assistance. Although still independent and capable, they may risk injury when they undertake routine chores like cooking and cleaning.

Institutional care

The individual's physical and emotional demands on the family may eventually become overwhelming. Many families may prefer to keep relatives with HD at home whenever possible, but a long-term care facility may prove to be best. To hospitalize or place a family member in a care facility is a difficult decision; professional counseling can help families with this.

Finding the proper facility can itself prove difficult. Organizations such as the Huntington's Disease Society of America may be able to refer the family to facilities that have met standards set for the care of individuals with HD. Very few of these exist, however. Even fewer have experience with individuals with juvenile or early-onset HD who require special care because of their age and symptoms.