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 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: Decreased eating or changes in eating habits, possibly as a result of depression
- Be aware that depression may develop as the person struggles to accept the diagnosis.
- Psychological care should be sought from a therapist who is familiar with Huntington's disease.
Problem: The person has food cravings, particularly for high carbohydrate foods.
- There is little need to worry about food cravings, as long as the individual eats a well-balanced diet.
- A multivitamin and mineral supplement that meets 100% of the RDA may be beneficial.
In the Middle Stages
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 (such as 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 (such as 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 (chorea) 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.
- Invest in some soup plates (bowls with attached plates), and pasta dishes, which can be placed on plates.
- 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
- Icecream (without chips, nuts, or chunks)
- Mayonnaise (add to sandwiches, 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 sitting arrangement.
- Be flexible and consider the changing needs of the person with Huntington's disease.
In the Advanced Stages
As the individual's condition deteriorates, he or she will depend on a family member or other caregivers for feeding. 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.
Hereditary Disease Foundation
The Huntington Disease Society of America
International Huntington Association
National Institute of Neurological Disorders and Stroke
Last reviewed July 2007 by J. Thomas Megerian, MD, PhD, FAAP
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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