Nutritional Care for People With Huntington's Disease
by Amy Scholten, MPH
Maintaining optimal nutrition may be difficult for the person with Huntington's disease, particularly as the disease progresses. The disease involves chorea (jerky, involuntary movements), difficulty swallowing, and psychological problems, all of which can make eating a challenge. In addition, because of their constant muscle activity, people with Huntington's disease require more calories to maintain their body weight. They are also at an increased risk for aspiration (inhaling food into lungs) and suffocation due to difficulties with swallowing.
The individual with Huntington's disease will most likely want to maintain his or her independence in eating. However, as the disease progresses, he or she will become more dependent on others. If you are responsible for the nutritional care of a person with Huntington’s disease, the following tips can help. Registered dietitians, speech-language pathologists, and occupational therapists can provide additional help.
In the Early Stages
Problem: There may be a decrease in eating or changes in eating habits.
Depression may contribute to eating problems:
Problem: Food cravings, particularly for high carbohydrate foods.
Frequent, smaller meals may be easier to tolerate now and later. Talk to a dietician with experience in Huntington's Disease nutrition.
In the Middle Stages TOP
In this stage you may find more involuntary movements, less dexterity, and slow reaction times. Keep in mind that it may be common for the person to be unaware of hunger until it is time to eat. However, their body still need regular meals. Skipping or missing meals can lead to exhaustion and uncontrolled emotions because of unrecognized hunger. Scheduling meals over set periods of time can help avoid these problems. Here are some other tips that may make meal time easier:
Problem: Difficulty swallowing; choking
Problem: Jerky movements and poor coordination make eating slow and messy.
Problem: Increased caloric needs
Problem: The individual becomes distracted or upset during mealtimes.
In the Advanced Stages TOP
As the disease progresses, nutrition will need to be delivered by a family member or other caregivers. Caregivers with patience, sensitivity, and a sense of humor tend to find the experience enjoyable and loving rather than stressful.
When eating becomes extremely difficult, tube feeding is an option. Family members and other caregivers may be trained to provide tube feeding at home.
Things to Remember TOP
There is a lot of information here, so take a minute to remember some key points:
The best way to manage Huntington's disease is to be informed and take advantage of professional help when you need it.
Hereditary Disease Foundation
The Huntington Disease Society of America
Canadian Association of Family Physicians
Huntington Society if Canada
Depression. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed/what.php. Updated November 13, 2012. Accessed November 26, 2012.
Huntington Disease. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed/what.php. Updated September 4, 2012. Accessed November 21, 2012.
Huntington's Disease - Diet Issues. Better Health Channel website. Available at: http://www.betterh.... Updated June 2011. Accessed November 21, 2012.
Nutrition and HD. Huntington's Disease Society of America website. Available at: http://www.hdsa.org/images/content/1/1/11695.pdf. Accessed November 21, 2012.
Last reviewed November 2012 by Brian Randall, MD
Last Updated: 11/27/2012