Swallowing and Nutrition

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Swallowing and Nutrition

From Nursing Care In Late Stage Huntington Disease

Readers may also find additional information here -> Swallowing Difficulties in HD

I have already discussed that as Huntington's Disease progresses the involuntary movements become more severe and this affects the ability of swallowing and the coordination of the swallowing mechanism. There is a higher risk of aspiration of food particles as inhalation may occur when the vocal cords are open and the airway is exposed. This makes it important for the client not to be engaged in conversation during a meal which would greatly increase the chances of aspiration.

There is increased movements and coordination of the tongue which impairs their ability to prepare food for swallowing. Food materials are often pushed out of the mouth by involuntary movements and the entire timing of the swallowing sequence may be disrupted which may cause them to swallow large particles of food and increase the chances of choking. With the timing of swallowing off it may cause a person to swallow when the airway is still exposed causing aspiration of food particles which introduces foreign particles into the airway and lungs, causing aspiration pneumonia.

Other factors that affect swallowing is the environment, they need a quiet undistracting eating environment with minimal to no conversation, only the caregiver giving cues to chewing and swallowing. They need to be able to concentrate only on the task at hand of eating and swallowing.

If the person with Huntington's Disease is tired or anxious they may have more difficulty with chewing and swallowing. With anxiety, the muscles of the throat are particularly vulnerable as it gives the sensation of a lump in their throat when they are extremely upset. Thus they have more difficulty trying to coordinate their swallowing as the muscles are more tense and more difficult to try to control.

This anxiety can become heightened for a person with Huntington's Disease especially at mealtime if they have had an experience of choking or near choking before. So it is important to have a plan of how to help your client be relaxed at mealtime and not to fear an upcoming meal.

If they have nearly choked or choked in the past remember to use a lot of reassurance with them and help them by giving them the verbal cues of the chewing and swallowing process. This will help them stay focused on the task at hand and may distract them from their anxiety which will aid them in relaxing more. We have a swallowing video available with our display if anyone is interested in it.

Some Warning Signs of A Swallowing Problem

Clearing the throat frequently

Wet or gurgly sounding voice

Coughing while eating and after a meal

A noted delay prior to swallowing food

Not swallowing food and liquids but rather holding them in the mouth

Having difficulty coping with different textures of foods and liquids

Exaggerated movement of the mouth and tongue

When eating and drinking tilting head back

When swallowing one bite of food, noted to swallow numerous times

Food and liquid falling out of the mouth or spitting out food

Still having food left in the mouth after swallowing and a completed meal

Having excessive secretions through the nose and/or mouth while eating

Showing signs of fatigue during meals

A noted weight loss over time

Recurrent episodes of pneumonia

Tips For Mealtime

Frequent and high calorie meals, drinks and snacks, clients need up to 5000 calories or more each day

Minimize distractions during meals, concentrating mostly on swallowing properly, encourage no talking while trying to eat, save conversation for after meals

Help the client eat until they are full

Make sure they eat slowly, chewing food completely before swallowing.

Be careful with hot beverages due to the decreased sensation to heat

Some people find it easier drinking through a straw

Use a single or double handled cup, and even a mug or cup with a cover on it, to help preventing spills, especially of hot liquids

Using a teaspoon can help in smaller amounts of food put into the mouth at a time

Make sure the client is properly positioned.

Proper positioning being 1) sitting upright 2) swallow with head tilted down with the chin toward the chest 3) Find ways through experimentation to minimize head movements

Ensure to choose food of appropriate texture and temperature

Soft, blended and pureed foods are generally easier to swallow

Thickened liquids are easier to swallow

Acidic foods increase saliva production so try to avoid while sweet foods decrease saliva production

Make sure your client takes small bites of food

Try to alternate between solid food and liquids

Try to encourage a dry swallow or to take double swallows between each mouthful of foods and liquids

As a caregiver, it is important you take your time as well, do not rush your client when they are eating

Have your client remain sitting up after eating for up to 20 - 30 minutes

Report any coughing or choking incidents to your supervisor and/or doctor

As a caregiver learn the Heimlich maneuver

As with peoples moods, swallowing difficulties and changes can fluctuate from day to day or from week to week. This does not mean that with one meal or one day of real difficulty swallowing that a person with Huntington's Disease is progressing to not being able to swallow at all, but it does put them at that time at a higher risk for a choking episode.

Be patient and understanding, give a lot of reassurance and encouragement as it can be a real distressing time for your client. Let them know that they can take a break, maybe they are just too tired or had a more anxious day, encourage them to rest, but also explore with them if there is anything else bothering them.

There maybe something else distressing them, pain, anxiety , tired, scared or maybe it could be as simple as they do not like the meal. Talk to your client and try to find out a problem. If there does not appear to be anything obvious just stop the meal and try something else at the next meal or when they feel hungry again.

You may want to try some supplements in between meals such as Ensure to ensue that your client does get their calorie intake.

As the disease does progress you will notice that your client will have more and more difficulty with different foods and textures, keep assessing their swallowing daily and what foods are easier for them.

Choking and aspiration pneumonia are the largest causes of death in persons with Huntington's Disease and can happen quite unexpectantly. When there are more and more problems with eating and swallowing and noticeable weight loss it is time to be in touch with your clients doctor to discuss further strategies.

One issue that does come up as the disease progresses and swallowing becomes more and more difficult and your client begins having episodes of choking or even getting aspiration pneumonia, is the issue of a possible feeding tube.

This issue has quite a controversy around it and needs to be discussed with the client, their family and their doctor. It eventually comes down to quality of life issues and is not the right choice for everyone. Some people want it and others do not, but the dependant factor is if it is prolonging your clients suffering or will it give them a prolonged quality of life.

Feeding Tubes - A Personal Story

I would now like to share with you a personal experience that I had with my grandmother in relation to eating and swallowing difficulties.

My grandfather opted to keep my grandmother home and care for her himself and he did a wonderful job. My grandmother would not allow him to have any help with her care besides family members and he promised her he would not put her in a home but care for her until the end.

Well even though my grandfather had taken into account everything basically that I have discussed here today in all aspects of care including feeding, my grandmother got down to a weight of approximately eighty-five pounds. She ate Ensure puddings, baby food custards, cream of wheat and high calorie custards, but she was having a harder time with her swallowing.

One very upsetting and disturbing memory was of trying to feed her myself, with each and every spoonful my grandmother would be coughing and making a gurgling sound. I had to talk her through the swallowing process and she used to always do the double and triple swallow, but it was never completely effective. She would swallow her food and her saliva would run out her nose, each meal we would go through almost a half a box of kleenex for her nose, it was a continuous flow out her nose of saliva.

Seeing my grandmother like this was very upsetting and difficult for me even though I knew that this was how the disease progressed. My family has had much experience over the years with Huntington's Disease and were very open with it, I discussed with my grandfather about thinking it was time to speak to the doctor about a feeding tube. This was our decision with my grandmother knowing that she still could live a quality life with a tube. It was not until two months later that my grandfather had a bad experience at home with my grandmother of choking. This scared both him and my grandmother, she went into hospital and ended up with choking to the point with each meal of needing to be suctioned.

Our decision then came to light, it was time for the feeding tube. Since the feeding tube has been put in last summer my grandmother is a changed women, though now in a longterm care facility, she has gained a fair amount of weight, now she is over a hundred pounds, and is also brighter.

We thought that she was deteriorating cognitively more that she should have been as she was seeing things not really there and did not know all the family. This is not the case now, she is as bright as a whip now. You ask her anything about anyone in the home around her and her family and she will know what is going on.

The cognitive changes we noted as so bad were actually due to starvation as she was not receiving enough nutrition to sustain herself due to her swallowing difficulties.

Though with a feeding tube in place a person with Huntington's Disease can still get aspiration pneumonia, this due to aspirating on their own saliva and not being up and around, so even though they get their proper nutrition through their tube feeds and lower their chances of choking and aspiration, it can still occur.

So this again brings up the issue of quality of life even with a feeding tube, so this in itself becomes a controversy.