Physical & Nutritional Supports (Part 2)

Last month, we talked about Physical Supports and the concept of supporting a person 24/7 to achieve better health. In this month’s article, we’ll touch on Nutritional Supports. I credit HRS founder, Karen Green McGowan, RN, with enhancing my knowledge about this important way of support.

Few people with intellectual and developmental disabilities (IDD) are born with bony deformities. This is more often a function of failing to initiate the battle with gravity that begins with spinal shaping from a belly-down position. If, instead of moving the head and spine against the opposing force of gravity that normally changes the spine from a big C into an S curve, the person remains on their backside with little active movement, the body will take a new shape that reflects the primary pattern of movement. The head and spine will often flatten and reshape into scoliosis, kyphosis and a flattened chest. These deformities can interfere with normal bodily functioning including the ability to safely swallow.

Nutritional Supports are basically supporting a person in safely achieving good nutrition.

Consider someone that eats with her head rolled back and to the left. This position prevents an adequate closure of the flap that protects the windpipe. Bits of food can just fall right on into the airway. She develops aspiration pneumonia which leads to fibrosis in her lungs. Even if the poor eating posture is thereafter corrected, the fibrosis will predispose her to further pneumonias.

The key lesson here is prevention. Nutritional Supports are basically supporting a person in safely achieving good nutrition. Below are a few general tenants of good nutritional support.

Basics of proper alignment for eating:

  • Align the person starting with the proximal joints and work your way out to the arms and legs.
  • The trunk should between 45 and 105 degrees with 90 degrees the theoretical optimum.
  • We can eat in other positions besides sitting, such as prone on forearms or side lying. These positions are usually reserved for people who have deformities such that sitting is not a good position for them.
  • Keep the trunk as straight as possible with the nose, navel and knees pointing in the same direction.
  • The head should be pointing forward with the nose in midline. The head should not be tilted forward or back as that interferes with the function of the epiglottis in covering the airway. The most dangerous of these is tilted back as it opens the airway right up. It is very dangerous to eat this way.
  • The person may need to have their head supported in neutral and a little help to pull the jaw forward.

The above is general information and should not be implemented for any particular person without consulting with their healthcare professional. Always refer to a person’s Physical and Nutritional Support Plan for individual guidance of positioning and proper techniques for safe eating.

Physical & Nutritional Supports (Part 1)

I’ve practiced medicine in the field of healthcare for people with intellectual and developmental disabilities for many years, and sadly, I had never heard of the term “Physical and Nutritional Supports.” Sure, we did some of these things in our clinical support of people with IDD, but we never had fully understood what I consider this “lost art.” It’s time to put an end to that way of thinking. In this newsletter, we’ll talk about Physical Supports, and in a later newsletter, we’ll delve into Nutritional Supports. Much of what you read in these articles was adapted from the writings of HRS founder Karen Green-McGowan, RN. I’m thankful for the opportunity to have learned this and so much more from her.

The Concept of Physical & Nutritional Supports

People with physical disabilities often have conditions like cerebral palsy, spasticity and contractures of their extremities. Often, they are prescribed physical therapy for range of motion. There’s nothing wrong with that, but let’s look at it this way. We’ll compare weight loss to physical therapy to illustrate the concept.

Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day.

Consider a person who is morbidly obese. Doses of therapy, such as a 300-calorie meal three times a week, will seldom impact the problem unless movement and intake are modified 24 hours a day. Many clinical services are delivered in doses, but most major issues, such as obesity or recovery from a stroke, require a major alteration in lifestyle

With that in mind, consider a person who has a physical disability. They go to see a physical therapist for three doses of physical therapy per week. They then return home and are placed in a chair for the rest of the day before being placed in bed. That physical therapy is wasted and will have little, if any, impact on the health of the person. Ninety minutes of stretching a week compared to the remaining 9,990 minutes in the week spent sitting or lying down with little active movement just won’t do it.

Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day. Babies born with hemiplegia, the most common form of cerebral palsy, want to use only their good side and leave the involved side dragging behind. When they are forced to use the involved side from the get-go, within a year or so, one can often not tell that the toddler had a disability at all.

This makes the case for 24-hour planning that utilizes many forms of supports to get the function of a healthy body. It is not only up to the therapist or clinician to manage the person’s health. It is up to each person who supports them to understand the forms of support this person requires and how they fit in. Techniques to support people 24/7 are relatively easy to learn and to implement by all staff including direct support professionals when guided properly by a physical and nutritional supports plan. Rather than focusing on doses of therapy, we should develop a therapeutic lifestyle. It just makes sense.

Eating Disorders

Eating disorders are generally considered and diagnosed in neurotypical people, but did you know they can affect persons with IDD as well? Although serious and sometimes fatal, they are treatable.

The person typically has an uncommon relationship with food. It can be portrayed in their actions, their justification for it or it can be their lover, comforter and friend. Eating disorders can also stem from distorted perceptions of weight and body image. Females are more often affected than males.

Many people do recover from eating disorders but may relapse during stressful periods in their life.

Anxiety, depression, substance abuse and obsessive-compulsive tendencies often occur in combination with eating disorders. Anxiety is the most frequently seen in connection with an eating disorder.

Here are some eating disorders that you may see:

  • Anorexia NervosaThis is identified by a significant weight loss and a skewed view of body image. There is often denial that there is a problem and the person doesn’t recognize the seriousness of the disease.
  • Avoidant Restrictive Food Intake DisorderThis describes a very, very “picky” eater which often results in a significant lack of nutrients and calories for cellular health and overall body health.
  • Binge EatingBinging is eating a large amount of food within 2 hours or less, significantly more than others would eat. The person has the feeling of loss of control during a binge and strong feelings of guilt and shame after the binge. Binge Eating is the most common eating disorder in the U.S.
  • Body Dysmorphic DisorderThe person focuses on one area on, or part of, the body and sees a serious “flaw(s). The area or “flaw” is generally not noticed by others. They feel ugly and deformed and “fat” when they are within their normal weight. They are constantly comparing their body to others and are obsessed with checking mirrors, excessive clothing changes and application of makeup.
  • Bulimia NervosaBulimia is binge eating with compensatory behaviors to eliminate the calories they consumed. These compensatory measures may be vomiting immediately after binging or taking excessive diuretics and laxatives. Bulimia is not necessarily about the food or its comfort, but more about body image.
  • NeophobiaNeophobia is the fear of trying any new foods and rejecting food when it is served before it is even tasted. This can sometimes be related to the presentation, form and smell of foods.
  • PicaA person eats nonnutritive substances for at least 1 month. The more severe the disability, the more likely it is for the person to have pica. Some pica can be related to nutrient and mineral deprivation, especially iron and zinc. Pica is strongly associated with disorders of the GI tract.
  • Purging DisordersPurging disorders occur in the absence of binging. Purging can take the form of self-induced vomiting, over-use of laxatives, diuretics or enemas.
  • RuminationIt is generally defined as chewing and re-swallowing prior ingested food. It can also be the voluntary and repetitive expulsion of regurgitated stomach contents. It can occur across the lifespan and is more common in persons with IDD. It is often misdiagnosed, in some cases 2 years. Generalized anxiety disorder often accompanies rumination.
  • Super TasterThis person has a sense of taste that is a higher intensity than others. A super taster typically has a more intense taste to bitter, fatty or very sweet items. They may eat more salt to counteract the bitterness. The person also may be very sensitive to hot, spicy food because pain receptors surround the taste buds.

The primary goal when treating a person with an eating disorder is to first treat the malnutrition and the underlying damage caused to organs when possible. Many people do recover from eating disorders but may relapse during stressful periods in their life. 

Obesity in America

Obesity has become so common in America, we think it’s normal when we see extremely overweight people. And, how do they find that many people to film the show “My 600 Pound Life” season after season?

Obesity is defined by the CDC as a BMI over 30 and severe obesity is a BMI over 40. Sometimes health care providers look at waist circumference as well. In women a waist circumference of > 35″ and males > 40″ is considered obese. We need to readjust our acceptance of obesity. Not because of the way the person looks, that is absolutely not what I mean, I mean the health concerns that obesity causes.

Many of the persons receiving supports may have a syndrome that is associated with obesity but we still need to manage the issue. Most of you are probably familiar with Prader Willi Syndrome and Down Syndrome (Trisomy 21). Both of these syndromes have a problem with obesity. Nevertheless, we can try to manage a person’s weight so that they are just a little heavy, but not considered unhealthy. Diet and exercise management is extremely important, not only to prevent weight gain, but also to manage constipation, hypertension, diabetes, bone health and many other conditions. Remember that eating is so much more than the intake of food, it is a social event, time for celebration and also the enjoyment of wonderful new foods.

Prader Willi Syndrome and Down Syndrome (Trisomy 21). Both of these syndromes have a problem with obesity.

Portion control, especially what we see in typical restaurants, is usually at least 2 -4 times more than the appropriate portion size. If we were served 1 cup of spaghetti on our plates, we would be very upset but that is the amount of pasta in a serving. Learning about and teaching portion sizes can be very constructive and this website from NIH is helpful. NIH Website.

Laboratory testing to monitor blood glucose, lipids, kidney function and other key indicators must be performed regularly to allow for early intervention when a problem is first identified. Face-to-face assessments with nurses in the community and the physician or a physician extender must occur regularly to help prevent increased death and other diseases.

Remember, the only person we can change is ourselves. But we can become positively contagious and set the example for others by eating in a healthy way at home with guests or if you go out to a restaurant. Be sure when shopping for food you go with the person receiving supports and teach them about portion sizes and how to read food labels. There are very simple and easy ways to teach portion control. Associate size with something they are familiar with in their environment, such as a cupcake wrapper or the tip of their finger or the palm of their hand.

I don’t know all answers to eliminating obesity, but this is a good start. 

Nutritional Supports

Nutritional supports take a very broad look at the process of eating and digestion. Many people that are receiving services require some assistance with the intake of food. They may need their food specially prepared or need assistance with eating. Safety is the biggest concern as persons become more dependent on others for eating.

Mealtimes and eating may become unpleasant for a person. This may be due to pain or discomfort, swallowing difficulties or even that they have had to have a feeding tube placed and can no longer enjoy the taste of food. Whatever is causing that person to find meals disagreeable should be investigated and the cause eliminated if possible. Drill down to find out if the problem is related to the intake of food, the processing or absorption of the food or even the excretion of waste.

Safety is the biggest concern as persons become more dependent on others for eating.

When we look at the intake of food, we are focusing on getting the food safely in the mouth, down the throat and esophagus and into the stomach. There are many things that can go wrong here because of the high level of muscle and nervous system coordination that is required to get the food from plate to the stomach. Difficulty swallowing and aspiration is one of the big concerns.

If the person does not have good lip closure, strong tongue control or adequate nerve supply to the throat, choking and aspiration are a real threat to the person’s life and overall health. If the muscle at the top of the stomach doesn’t close well, reflux becomes an issue. When the person has significant heartburn and stomach pain, they don’t feel very much like eating.

Processing of food and absorption of nutrients can be problematic as well. It takes 4 to 6 hours for food to completely be digested enough to leave the stomach. High fat meals require the longest time. Often positioning a person on their right side with their trunk and head elevated at least 30 degrees helps the stomach to empty. This also may help to reduce the frequency of reflux by helping the stomach to drain rather than push food back up into the esophagus.

The formation and elimination of bowel movements certainly causes difficulties for people that we serve. This doesn’t even scratch the surface of things that can cause difficulties at mealtimes. The important thing to be aware of is, does the person have a problem with intake, processing, absorption or elimination? Once the problem is identified always take action to see what you can do to resolve the problem to make eating and mealtimes more pleasurable.

We have discussed the problems with constipation and bowel obstructions in the past. I’m sure we will produce more articles on these topics in the future because it is such a prevalent issue. If you would like to read any of those historical articles, go to https://hrstonline.com and click “Article Library” at the bottom right of the page.

Physical & Nutritional Supports

For most all of us, getting up and eating our daily meals, plus a few snacks here and there, is something we take for granted. Running through a drive-thru window for our favorite beverage on the way to work is routine. But what if our meals had to come through a tube, or be pureed or liquids thickened? That would certainly turn our daily routine upside down!

As service providers, some of the people you provide supports for receive tube feedings or their food and fluids are otherwise specially prepared. This is their routine. Doesn’t sound very appetizing, does it? What if you could help a person MAYBE eat a little more independently or have a more typical presentation of their meals and drinks? I think you would agree that would be the better way to go. Physical and nutritional supports may help you do that.

What if you could help a person MAYBE eat a little more independently or have a more typical presentation of their meals and drinks?

Don’t just think of physical supports as a specialized chair or positioning device. Physical supports are a whole range of positions that a person can assume throughout the 24-hour day to help assist that person move better. It may consist of placing a person in a position where they are required to reach out for an item or loosen up a tight joint. This might allow him or her to eventually use that arm to eat by being able to reach their utensils or a glass of fluid. As a caregiver, you may be trained in special techniques to help control jaw movement or teach a person to drink from a straw. These special positions and procedures are often used by physical and occupational therapists to achieve a more independent eating style for the person.

There are many ways that therapists can assist a person with eating. Therapeutic positioning is one of the means they use to help a person gain more control. Therapeutic positioning involves putting a person into a “working” position. A working position is one where muscles, bones and joints must “work” to hold them in that position. These positions help reform those connections and the movement ability. A person should be in working positions throughout the entire day. The appropriate therapist prescribes what those positions should look like.

Therapists may also help persons with adaptive feeding methods or other physical supports. There are many eating utensils that enable a person to eat more independently. You may be familiar with some items such as built up handles on a spoon or a rocker knife, but there are a lot of other devices available. Sometimes, a person could eat more by mouth with special presentation techniques. The therapist can determine if they have one side of the mouth that is stronger than the other and determine where food needs to be placed on the tongue. Another method is to trigger reflexes of the lips in order for a person to pull food off of a utensil.