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Huntington's Disease Caregiving

Swallowing Difficulties~Physician's Guide
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Swallowing Difficulties~Physician's Guide
Warning Signs of Swallowing Problems
Swallowing, Coughing, Choking & Pneumonia
Swallowing~Giving Medication
A Practical Guide: Nutrition and HD & Resources
Diet & Nutrition in HD
Nutrition and Huntington's Disease
Nutrition Information for the Care Giver
Texture & Consistency/Thining & Thickening Foods
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Swallowing Difficulties
Chapter 3 - Physician's Guide To The Management of HD
The Movement Disorder

Dysphagia is, directly or indirectly, the most common cause of death in people with late stage HD, whether through choking, aspiration, or malnutrition.

Dysphagia results from impaired voluntary control of the mouth and tongue, impaired respiratory control due to chorea, and impaired judgment, resulting in eating too rapidly, or taking overly large bites of food and gulps of liquid.

Dry mouth, which can be brought on by neuroleptics, antidepressants and anti-cholinergics may worsen the problem.

  • Eat slowley and without distractions.
  • Prepare foods with appropriate size
    and texture.
  • Eating may need to be supervised.
  • Caretakers should know the
    Heimlich maneuver.
  • No medications are known to improve swllowing directly.

    Early referral to a speech-language pathologist will help identify swallowing difficulties, and periodic reassessment can identify changes in swallowing ability and suggest appropriate non-pharmacologic interventions such as a change in food consistency.

    Devices such as enlarged grips tor silverware and nonslip plates with raised edges to prevent spilling may prolong independent eating.

    HD affected individuals should be instructed early in the disease, before the onset of dysphagia, to eat slowly and deliberately, to sit in an upright position during and after meals, to take small bites, and to clear the mouth of food after each bite by taking sips of liquid.

    Individuals with dysphagia should avoid doing other activities while eating, in order to concentrate on chewing and swallowing. For instance, patients should not talk while eating, nor be distracted by television or ambient noise.

    Those who tend to hyperextend the neck due to chorea or dystonia should be encouraged and reminded to use a "chin-tuck" position. Drinking fluid through a straw may be easier than drinking directly from a cup, and the use of a covered cup or mug, like a "sippy cup" used by young children, may prevent spillage due to chorea.

    Grainy items, such as ground beef or rice, may irritate the pharynx and cause choking. Foods such as steak, which are hard to chew, should also be avoided, or ground to a puree. Patients may have difficulty adjusting to different textures of food, and may do better if they finish each item on the plate in turn.

    In late HD, when even liquids may be difficult to swallow, the texture of food should be soft and smooth, and liquids may be thickened with an additive (see Appendix 3). For those patients who may be unable to follow instructions reliably, a caregiver can cut the food in advance, and ensure that each mouthful has been completely chewed and swallowed before the next bite is begun. Supervision throughout the meal may be necessary, and the family or caregiver should be taught to perform the Heimlich maneuver.


    In some cases, eating eventually requires so much energy and concentration that the patient becomes tired and frustrated before consuming adequate amounts of food.

    Weight loss, very prolonged mealtimes or an inability to handle utensils may be the signal that he will need to be fed for at least part of the meal. Self-feeding may be prolonged by having the patient eat more frequent, but smaller meals, and by using "finger foods." The transition to assisted feeding does not have to be all or nothing, as patients may still be able to eat unassisted at certain times and be fed at other times.

    Choking may decrease once self-feeding is stopped, because the caregiver will have greater control over the size and frequency of the bites. The caregiver should still promote eating slowly, and not talking while eating, and should make sure the mouth is empty before each bite.

    With supervision, most patients are able to assist with feeding and to take adequate amounts of food by mouth quite far into the illness. However, before dysphagia and communication difficulties become severe, the issue of feeding tubes should be discussed with the patient and family, to ensure that appropriate nutrition can be maintained throughout the illness.

    A gastrostomy tube can clearly improve nutritional status in a debilitated person with severe dysphagia, and may prolong life. However, patients and families may not desire this intervention late in the course of HD. The question of whether to use a gastrostomy tube, and other end of life issues are discussed in the final section of chapter 6.


    Weight loss is a common problem in Huntington's disease. This is probably due in part to diminished food intake because of dysphagia, fatigue, and depression. However many HD patients also require a large caloric intake to maintain their body weight. This may be simply due to the expenditure of energy through involuntary movements, but there may be other metabolic reasons not fully understood.

    Two strategies can be employed to increase the caloric intake of someone with HD: increase the number of meals, or increase the calorie content of the food.

    The first goal can be achieved by eating five small meals a day or by adding high calorie snacks such as milkshakes. The caloric content of the food can be increased by measures such as adding oil to soups, drinking cream instead of skim milk, adding margarine liberally as a condiment, and focusing on easily eaten, high-calorie foods such as pasta with cream based sauce.

    Consultation with a nutritionist can help in selecting the most appropriate foods and supplements to meet the patient's needs. Regaining lost weight sometimes results in improved alertness and responsiveness, and often appears to reduce chorea as well.

    Maintaining hydration is also very important, particularly in the summertime in patients who may not be able to request fluids.

    Cyproheptadine, an antihistamine, given as 4mg at bedtime, may help increase weight by stimulating appetite in some patients.