Self-Care at Home

With the combination of physical, mental, and emotional disabilities that come with advancing HD, the affected person soon becomes unable to care for himself or herself. In many cases, the person remains at home and family caregivers provide most of the care. Caregivers are responsible for balancing the needs of the person with those of the family and caregivers.

Safety is an important issue for the affected person and for the caregivers.

• The person with HD requires supervision. He or she may get into dangerous situations in the home, wander off, or even attempt to harm himself or herself.
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• As much as possible, hazards should be removed from the home to prevent falls and other injuries.
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• The person with HD may become agitated or even violent. In this condition, he or she could harm a caregiver or himself or herself.
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• As symptoms worsen, the person with HD should stop driving a car or using dangerous equipment.

Individuals with HD should remain physically, mentally, and socially active as long as they are able.

• Daily physical exercise helps the body and mind function and maintains a healthy weight. Many people are able to continue walking for some time as the disease worsens. Some require special shoes, braces, or other equipment to help them walk. A physical therapist can recommend exercises appropriate for the person’s physical abilities.
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• The individual should engage in as much mental activity as he or she can handle. Puzzles, games, reading, and safe hobbies and crafts are good choices. These activities should of course be matched to the person’s physical abilities. They should be of an appropriate level of difficulty to ensure that the person does not become overly frustrated.
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• Social interaction is stimulating and enjoyable for most people. The person should be included in family meals and activities to the greatest extent possible. A local community center may have scheduled activities that are suitable.

Loss of coordination and swallowing problems may make eating and drinking difficult for people with HD. It is very important that the person with HD consume enough calories and nutrients.

• Caregivers should adapt foods to make them easier to eat. This may mean changing the consistency or the size of bites.
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• A dietitian can give advice to ensure that nutritional needs are met and to help the person eat independently for as long as possible.
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• Swallowing therapy is available. It usually works best if started before swallowing problems become severe.

As the person's dependency increases, caregivers may begin to feel more burdened.

• Families should plan for the possibility of having additional support at home or for possible transfer to a long-term care facility.
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• Many families choose to use some form of respite care (eg, home health aid, daycare, brief nursing home stay).
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• Your social worker may be helpful in arranging this.

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