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Nutritional Care for People With Huntington's Disease
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 their independence in eating. However, as the disease progresses, they 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
You may find more clumsiness at this stage. Anxiety and depression are also quite normal as the affected person adjusts to the diagnosis.
Problem: There may be a decrease in eating or changes in eating habits.
Depression may contribute to eating problems:
- Be aware that depression may develop. Look for symptoms such as a loss of interest in most activities, or fatigue as the person struggles to accept the diagnosis.
- Seek psychological care from a therapist who is familiar with Huntington's disease if depressive symptoms last more than 2 weeks.
Problem: Food cravings, particularly for high carbohydrate foods.
- There is little need to worry about food cravings, as long as the individual eats an overall well-balanced diet.
- A multivitamin and mineral supplement may be beneficial.
Frequent, smaller meals may be easier to tolerate now and later. Talk to a dietitian with experience in Huntington's disease nutrition.
In the Middle Stages
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 needs 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
- Avoid eating when tired or upset.
- Sit upright during all meals, snacks, and drinks.
- Try to avoid foods that cause coughing, choking, or throat irritation. These may be foods that are dry, crumbly (chips, dry cereal), acidic (citrus fruit/juice, tomatoes/juice), spicy (chili powder, red and black pepper, curry powder), or stringy (melted cheese).
- Eat slowly.
- Avoid talking while eating or swallowing.
- Blend and puree foods.
- Add sauces, gravies, liquid dressings, and moist toppings (sour cream, butter, mayonnaise) to foods.
- Choose foods that are soft and moist, such as yogurt, pudding, scrambled eggs, mashed potatoes, macaroni and cheese, oatmeal, gelatin, milk shakes, frozen yogurt, or ice cream.
- Buy a commercial thickener to thicken liquids. Liquids with a milkshake consistency are easier to swallow.
- Cut food into small pieces, take small bites (½ teaspoon or less), and chew well.
- Between bites of food, sip a beverage.
- Use a straw.
- Make your own vegetable and fruit juices.
- Stay seated upright for at least 30 minutes after eating.
Problem: Jerky movements and poor coordination make eating slow and messy.
- Use cups with covers and straws, such as sports cups, to prevent spills.
- Get forks and spoons with rubber handles or larger handles for easier gripping.
- For the slow eater, use a warming tray to keep food warm.
- Use bibs, aprons, and moisture-resistant table covers.
Problem: Increased caloric needs
Have more high-fat, high calorie foods such as:
- Sauces (creamed or cheese) and gravies
- Creamed soups and bisques
- Plain, whipped, or sour cream
- Ice cream (without chips, nuts, or chunks)
- Mayonnaise (add to sandwiches and salads)
- Butter (add to vegetables, pancakes, and hot cereals)
- Smooth peanut butter or other smooth nut butters
- Full-fat salad dressings
- Avocados in guacamole dip, sliced in salads, or as a side dish
- Full fat milk or yogurt
- Soft cheeses, cheese spreads, dips, or sauces
Problem: The individual becomes distracted or upset during mealtimes.
- Eliminate possible distractions, such as the TV and radio.
- Avoid arguments or discussions that may be upsetting.
- Provide a pleasant and relaxing setting with adequate lighting, attractively arranged food and decor, and a comfortable seating arrangement.
- Be flexible and consider the changing needs of the person with Huntington's disease.
In the Advanced Stages
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
There is a lot of information here, so take a minute to remember some key points:
- This information helps with nutrition tips only. There are other aspects of the disease, like medications, and medication interaction. Learn as much as you can.
- Counseling may be part of the treatment process for the individual and family and caregivers.
- As the disease progresses, swallowing and eating become more difficult.
- During the late stages, person may need 24-hour care.
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
Huntington Society if Canada
The College of Family Physicians of Canada
Depression. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed. Updated October 2, 2014. Accessed October 24, 2014.
Huntington disease. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed. Updated August 11, 2014. Accessed October 24, 2014.
Huntington's disease—Diet issues. Better Health Channel website. Available at: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Huntingtons%5Fdisease%5Fdiet%5Fissues?open. Updated June 2011. Accessed October 24, 2014.
Nutrition and HD. Huntington's Disease Society of America website. Available at: http://www.hdsa.org/images/content/1/1/11695.pdf. Accessed October 24, 2014.
- Reviewer: Michael Woods MD
- Review Date: 10/2014
- Update Date: 10/24/2014