Huntington's disease and diet issues

Common complications of Huntington’s disease include problems with eating and swallowing (dysphagia), particularly as the disease progresses. Loss of muscle control and coordination can cause food to spill from the mouth, and may make it harder for the person to choose suitable foods or eat at a manageable speed.

Weight loss is often associated with Huntington’s disease, but it does not appear to be a direct result of diet. Some researchers think it may be linked to other biochemical changes in the body caused by the disease.

It is strongly recommended that the person with Huntington’s disease and their carers seek professional advice from a speech pathologist and a dietitian, to make sure the diet is nutritious and easy to eat.

Eating and swallowing problems#

A person with Huntington’s disease is more likely to choke. The eating and swallowing problems they may experience include:

• a large increase in appetite, and trying to eat quickly to satisfy urgent hunger
• loss of fine motor control in the face and neck that prevents efficient chewing and swallowing
• being unable to close the lips together properly, allowing food to spill out of the mouth
• irregular diaphragm spasm, which increases the risk of inhaling rather than swallowing food
• swallowing too soon, which is a choking hazard

Fear of embarrassment over choking or making a mess can make muscular jerking (chorea) worse, which in turn makes eating more difficult. Changes to thinking ability may also prompt the person to choose unsuitable foods or to put too much food in the mouth at once.

Food serves many purposes#

Food is more than just fuel for our bodies. It is a meaningful social and cultural event. As far as possible, the person with Huntington’s disease should be able to select, prepare and eat the foods they choose. For example, if they can no longer peel vegetables, perhaps they can still wash them. Always seek advice from a dietitian who understands the challenges faced by people with Huntington’s disease.

Food suggestions#

General suggestions on food choices include:

• choose frequent small meals instead of three large meals spaced widely apart, and always have second serves available
• choose soft, easy-to-chew and easy-to-swallow foods (aim for the consistency of porridge)
• use plenty of sauces and gravies to make main meals easier to swallow
• add plenty of custard, ice-cream and cream to desserts
• avoid hard foods such as nuts and hard sweets
• avoid foods that separate into “strings” or sections while being chewed, such as bacon or tomatoes
• choose foods high in nutritional and energy value, for example a protein-supplemented milkshake rather than black tea, and iced cake rather than plain crackers
• avoid non-fat and low-fat products, and choose full-fat varieties
• offer fortified drinks such as protein milkshakes or nutritional supplement drinks

Before the meal#

Distractions can make eating very difficult. It may help if the person:

• rests for one or two hours before mealtime
• eats in a calm, relaxed environment with the television and radio turned off

Anxiety makes chorea worse, so try to keep the mood light and cheerful. The person should sit in an accessible spot at the table in case they choke and a carer needs to help quickly. Keep all eating aids within easy reach.

During the meal#

• The person should sit upright while eating, never in a reclining position.
• To reduce the risk of choking, they should angle their head down towards the plate.
• Use non-slip table mats and lightweight utensils.
• Utensils with thick handles are easier to hold; regular cutlery can be adapted by slipping the handles into lengths of foam tubing. You could also consider strapping utensils to the hands.
• Use eating aids, such as plate guards, to stop food spilling onto the table.
• A double-handled cup with a spout, or a straw secured in a plastic cup, can make drinking easier.
• A plastic apron can protect clothes from spills.

A person with Huntington’s disease typically takes a long time to eat, so it may help to reheat their meal at intervals. They should never try to drink with a mouthful of food, as the contrasting texture can be confusing and prompt choking.

Never rush the person; allow up to one hour per mealtime. Afterwards they should stay sitting upright for about half an hour, as lying down too soon increases the risk of reflux and possible choking.

When the person is fed by others#

As the disease progresses, the person may be increasingly unable to manage at mealtimes and may need to be fed by their carer. Suggestions for the carer include:

• Be sensitive to the person’s feelings. No longer being able to feed themselves can cause a wide range of emotions, including despair, embarrassment and stress.
• Sit opposite the person you are feeding.
• Appear to have all the time in the world, as the person may feel anxious and tense if you seem to be in a hurry.
• Suggest they breathe out before taking a forkful, and remind them to stop breathing when it is time to swallow.
• A gentle massage of the face and throat may help the person swallow.
• Give them as much control as possible. For example, they may be able to hold their own cup if you guide it to their mouth.

Tube feeding#

A person in the later stages of Huntington’s disease may be unable to chew and swallow safely or effectively, and tube feeding may be suggested as an option. The type of tube used is usually a percutaneous endoscopic gastrostomy tube (PEG tube), commonly referred to as PEG feeding. Inserting a PEG tube usually involves a day procedure in hospital.

PEG feeding may not solve all the problems faced at this stage, and the decision to tube feed is an emotional one. It needs to be discussed sensitively and in advance with healthcare professionals.

Key points#

• Common complications include problems with eating and swallowing (dysphagia), particularly as the disease progresses.
• Loss of muscle control may prevent the person from choosing suitable foods or eating at a manageable speed.
• Use plenty of sauces and gravies to make main meals easier to swallow.
• To reduce the risk of choking, the person should angle their head down towards the plate.
• Use eating aids, such as plate guards, to prevent food being spilled onto the table.

Where to get help#