Huntington's Disease: An Overview

Caring for Someone with Huntington's Disease

Tips for Caring for Someone with Huntington's Disease

Caring for someone with Huntington's disease can be challenging. In the later stages of the disease, eating can become difficult and choking is possible.^[4] Food cut into small pieces, softened or pureed can make swallowing easier. Avoid dairy products because they increase mucous and the risk of choking. It may be necessary to increase the number of daily meals to maintain body weight and it may be necessary to add vitamin supplements.^[3] People with Huntington's disease require a lot of fluids to avoid dehydration, especially during hot weather. Use straws to assist drinking. For people who are very weak, thickened liquids make drinking easier. Constipation and loss of control over urination and bowel movements may occur. The doctor can suggest ways to handle this issue.

Exercise is important and promotes physical and mental well being.^[4] People with Huntington's disease should walk on a daily basis, even if help is required. Keep the area free of sharp objects since falling is a risk. Grab bars in showers can be helpful.^[6] Consider using padded clothing and sturdy shoes with good ankle support.

Social activities are important too and should be incorporated into daily activities as much as possible.^[4]

Because caring for someone with Huntington's disease can be challenging, as a caregiver you should think about what you can do to take care of yourself. Think about what type of living arrangements will work the best for you and your family. Review legal matters early while it is still possible to discuss them with the person with Huntington's disease. Consider setting up a living will and a final will. A living will assigns financial and medical decision-making powers to someone who will take on such responsibilities when the person with Huntington's disease is no longer able to.

See if there is a support group in your area. Here are a few resources for starters:

• Eldercare Locator at http://www.eldercare.gov/ or 1-800-677-1116
• Huntington's Disease Society of America at http://www.hdsa.org/ or 1-800-345-4372
• Family Caregiver Alliance at http://www.caregiver.org/ or 1-800-445-8106
• National Respite Network at http://chtop.org/ARCH.html
• Care.com at http://www.care.com/
• National Adult Day Services Association at http://www.nadsa.org/ or 1-877-745-1440
• Department of Health & Human Services, Administration on Aging at http://www.aoa.gov/

This Elder Health Guide was published on August 1, 2009.