Huntington's Disease

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Support for Families Affected by Huntington's Disease

Huntington's disease (confronts patients and their caregivers with many complex problems that must be dealt with for years. While it may be emotionally difficult, it is important for patients and caregivers to make informed, carefully considered decisions regarding the future while the patient is capable of making his or her contribution to a planned course of action. Patients and their family members should discuss and consider issues such as legal concerns, home care, assisted care, and institutionalization.

Legal Affairs If possible, draw up wills and other important documents as early as possible to avoid legal problems later on, when the patient may be unable to represent his or her own interests. Legal assistance may be necessary if the patient encounters discrimination over insurance or employment.

Home Care Part-time help with housekeeping and physical care is often necessary. Federal, state, and local government programs and private agencies provide varying levels of domestic assistance, nutritional and nursing care, occupational therapy, and other home-based services.

Housing In some communities group housing facilities are available to persons who are alone and still independent, though not fully capable of providing for all routine needs, such as cooking and housekeeping. In these group residences, a resident attendant takes care of meals, housekeeping services, social activities, and local transportation needs.

Institutional Care The decision to institutionalize or place a family member in a congregate care facility can be enormously difficult. Professional counseling may be needed to help families deal with this important life choice.

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