Author: Gaby Perham

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.

The Fatal Five Plus

By Karen Green McGowan, RN-BC and Craig Escude, MD, FAAFP, FAADM, FAAIDD

The term “Fatal Five” refers to the top conditions linked to preventable deaths of people with intellectual and developmental disabilities (IDD) in congregate care settings or in community-based residential settings. While the issues can differ in order of frequency depending on the population being represented, the conditions most likely to result in death or health deterioration for people with IDD are:

Aspiration
Constipation/Bowel Obstruction
Seizures
Dehydration
Sepsis

Another condition which is exceedingly common, frequently overlooked, and leads to significant health troubles in people with IDD is Gastroesophageal Reflux Disease, also known simply as GERD.

Let’s talk about each one of these in a little more detail:

Aspiration is usually listed as the most common cause of death in institutional settings, including nursing homes and large group care settings for people with IDD. Aspiration pneumonia is a common discharge diagnosis following hospitalization. It occurs when bits of food or liquids make their way into the windpipe instead of into the esophagus where it should be. Aspiration can occur during the swallowing process, but also occurs when stomach contents come back up the esophagus as a result of vomiting or gastroesophageal reflux. It often begins subtly and damages increasing portions of the lungs. Feeding tubes, which carry their own increased risks, are often utilized in an attempt to bypass the swallowing process and reduce aspiration episodes, but are not always entirely effective. Other factors which may lead to aspiration are poor body positioning, particularly in individuals who cannot control their own movements well, and behavioral issues related to eating. One of the most common signs of aspiration is a cough noted during eating or drinking or shortly thereafter. When a cough is noted under these conditions an evaluation should be initiated to look for possible aspiration.

One of the most common signs of aspiration is a cough noted during eating or drinking or shortly thereafter.

Constipation and Bowel Obstruction are almost always at the top of the list of causes of illness and preventable death in people with IDD. One of the most important root causes of bowel obstruction is the use of multiple drugs with constipating side effects. Add to this the fact that most of us have dietary habits that contribute to the problem, chief among them, diets that are low in fiber and adequate fluids. Lack of mobility is a contributing factor to constipation, as well. We often see people on one or more medications to help improve elimination, but ironically, drugs intended to improve constipation often place the person at higher risk for impaired bowel function. Adequate active movement or exercise is also important to bowel function. Controlling these factors, along with training caretakers to recognize the signs and symptoms of bowel problems at the earliest moment can greatly reduce occurrences of illness or death from bowel obstruction.

Seizure deaths can occur from episodes of prolonged, uncontrolled seizures as well as something called SUDEP or sudden unexplained death in epilepsy. For reasons that medical science has yet to explain, people who have epilepsy have a higher chance of dying suddenly unrelated to actual seizure activity. Drug toxicity and medication side effects can further impact the health and well-being of people who takethese medications, and the balance between adequately controlling someone’s seizures and the risk of adverse drug reactions must always be at the forefront of the treatment plan. Life expectancy for people with active seizure disorders has been shown to be up to 10 years less than those without epilepsy.

Dehydration is all too common and easily preventable in most cases. People who do not swallow well are particularly likely to refuse fluids or indicate fear when they get them, often resulting in dehydration. Dehydration is also likely when fluids are restricted in an attempt to prevent incontinence, not realizing that lack of fluids can contribute to constipation and increased seizure frequency, not to mention drug toxicity and other health problems. Awareness of fluid loss through sweating in warm and humid conditions or from loss due to vomiting or persistently elevated blood glucose levels in people with diabetes is important, as well. The presence of fever also increases a person’s fluid needs. Anyone supporting people with IDD should be aware of a person’s fluid requirements and work to ensure that they receive the necessary fluids to prevent dehydration.

Sepsis, sometimes called “the silent killer” is an ever-present threat to all. Sepsis is a condition which results from a significant infection in the bloodstream and the body’s response to that infection. Early signs of sepsis include fever, chills, rapid heart rate, low blood pressure and mental status changes. Some of these symptoms are common with may illnesses, but one’s index of suspicion should remain high for worsening signs of a serious infection and referral for a medical evaluation should be considered earlier rather than later. The risk of death increases significantly for each hour that passes when sepsis is left untreated. Remember, “When in doubt, send them out!”

Early detection and treatment of these conditions can lead to better health, lower risk of death, and improved quality of life for people with IDD.

Gastroesophageal reflux disease (GERD) is the backing up of stomach contents, including acid, into the esophagus. GERD is frequently undiagnosed in many people, including those without disabilities, until major harm has been done to the bottom of the esophagus. Medications that cause constipation also contribute to GERD. Individuals who are overweight, particularly when they carry excess weight around the abdomen or wear clothing that is too tight have a higher risk of GERD. Ill-advised dietary choices, immobility and improper positioning also contribute greatly to the incidence of GERD. As this disorder continues without treatment, discreet or frank aspiration, life-threatening gastrointestinal bleeding and esophageal cancer become increasingly common. Recognizing signs of GERD, especially in people who do not communicate with words, is important to reduce the risks associated with this condition. People who exhibit food refusal, coughing when lying down, physical or verbal aggression particularly around meal times, or distress in the middle of the night may be telling you that they are experiencing GERD. Pica, a behavior where people eat things of non-nutritional value, may also be a sign of GERD and should prompt an evaluation.

Early detection and treatment of these conditions can lead to better health, lower risk of death and improved quality of life for people with IDD. Make it a priority to educate yourself, support staff, families, and those with IDD to recognize signs of these conditions and to seek medical consultation at the earliest signs of illness.

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.

Metabolic Syndrome and Health Impact

Taking a lot of medications is a very real problem among persons with Intellectual and Developmental Disabilities. One pharmacy that only provides services to persons with IDD indicates their average number of medications per person is in double digits! No person can consume that many medications without experiencing side effects, drug:drug interactions or drug:food interactions.

Oftentimes, the medications that are frequently prescribed are anti- psychotic medications. The first-generation anti-psychotic medications consist of drugs like Thorazine (chlorpromazine), Haldol (haloperidol) and Mellaril (thioridazine) among others. These medications have a nasty side effect of Tardive Dyskinesia or TD. TD is a very unpleasant side effect and can certainly bring social attention and embarrassment, but it generally has little effect on mortality. The second-generation anti-psychotic medications such as Clozaril (clozapine), Zyprexa (olanzapine), Risperdal (risperidone) and Abilify (aripiprazole) have a different side effect called Metabolic Syndrome. Unlike TD, Metabolic Syndrome can and does kill people.

Metabolic Syndrome is a cluster of disease processes. It consists of Diabetes Mellitus, Hypertension, Obesity, elevated Triglycerides and decreased HDL cholesterol. These diseases may be controlled, but often aren’t, due to either lack of awareness by health care providers, lack of aggressive treatment for persons with IDD, lack of ability to purchase high quality foods and plan nutritious meals or lack of compliance among persons.

It is critical that Metabolic Syndrome be managed and controlled to the best of our ability. Poorly controlled Diabetes Mellitus can cause blindness, kidney disease and failure, poor wound healing and loss of limbs. Hypertension that is not well managed can also cause kidney failure along with other serious and life-threatening conditions like aneurysms, strokes and heart failure. Obesity contributes to heart disease, the development of hypertension and diabetes and social unacceptance. Poor regulation of cholesterol and triglycerides increases stroke and heart attack risk.

It is critical that Metabolic Syndrome be managed and controlled to the best of our ability.

Early recognition of Metabolic Syndrome may save lives. All providers of services should remember that although the 2nd generation anti-psychotics are safer than the 1st generation, they are not without their own set of issues. Quite often these medications significantly improve the quality of life for a person with IDD, but the potential side effects must be recognized and managed.

Life Long Learning

Learning is generally a conscious act. We take classes, we read articles related to our work, we go to seminars or listen to webinars. Lifelong learning is a concept that we not only use in our lives to better ourselves, but it is built in to the support process for the people we provide services to.

One of the major things we do in our support is to teach and lead. Maybe you don’t think of yourself as a leader or a teacher. You might think that is the responsibility of the people above you, but you are wrong. All of us lead and teach, no matter what position we are in. It is often not a conscious act.

If we are yelling at another staff in a conversation, are we not sending a message (hence, leading or teaching) that it is OK to yell at someone else? But what happens if a person receiving supports starts yelling at their peer? Yes, you got it – we “reprimand” or correct them and give them a lecture on how that is not appropriate. I had to burst out in laughter one time when a direct support person said “Gayle is so darn bossy. She thinks she’s staff.” My reply was “And if she thinks she’s staff and is bossy, just who did she learn that from?” It took the DSP aback that the staff indeed were “teaching” Gayle to be bossy.

Learning doesn’t have to be boring and related to our work.

Not only do we need to provide lifelong learning to the persons we support, but we need to do this for ourselves as well. It keeps our brain active and engaged. Learning doesn’t have to be boring and related to our work. If you love to garden, learning more about ideal planting times, soil types, water requirements, light requirements, fertilizer and many other things will help make your endeavor more successful. Doing puzzles and yes, even video games, keep our brain active and helps maintain hand/eye coordination.

Lifelong learning is so important to all persons’ lives. It makes us all a better person, friend, teacher, leader, parent or spouse. I hope you all learn at least one new thing every day. It may be a very small thing, or it might be something that profoundly affects your life. The point is, always accept learning opportunities when offered. There are so many different ways to gain knowledge without ever opening up another school book.

Dementia and I/DD

We are all exposed to different syndromes every day in our work. A syndrome is a set of symptoms that consistently occur together. Dementia is like a syndrome but not all people lose the same skills consistently. With dementia, there can be a wide range of symptoms associated with a decline in memory or other cognitive skills that when presented together are severe enough to reduce a person’s ability to perform everyday tasks. You may also hear dementia referred to as Alzheimer’s Disease. Alzheimer’s is just one of many types of dementia, but it does account for 60% – 80% of the cases.

Alzheimer’s is just one of many types of dementia, but it does account for 60% – 80% of the cases.

In the neuro-typical population, we expect to see the onset of dementia after the age of 65. However, since persons with I/DD age quicker than neuro-typical peers, the onset of their dementia may occur at a much earlier age, some as low as 35 in certain I/DD syndromes and diagnoses. For a person with I/DD never assume that the changes they are exhibiting are part of their diagnosis or syndrome. Always know the baseline functioning of the person so you can pick up on subtle changes. The typical screens for dementia are generally not appropriate for persons with I/DD because often they never did know the answer to the question in the screening, not just since they started showing symptoms.

Some of the declines to watch for are:

Confusion or problems with recent memory. Long term memory is generally not affected.
Getting lost in familiar places.
Wandering or elopement.
Decline in ability to assist with or independently complete activities of daily living, including toileting.
Inappropriate emotional response—crying when they are happy or clapping and smiling when there is a solemn occasion.
Unable to follow simple instructions.
Loss of ability to identify objects.
Change in personality.

Anyone would dread such a diagnosis and may experience depression. Death is always the outcome of dementia. Disabilities, mental health and behavioral issues may become more difficult to manage. The dementia diagnosis may have an emotional effect on the staff as well. One might even see depression signs in the staff as they slowly lose someone who helps fulfill their life.

But we can make this whole dementia process more manageable and be proactive. Let’s find out the desires and dreams of the person and try our best to bring those to fruition. Let us do things and provide activities that will delight the person and bring happiness to all. Sometimes we have to be determined and dare to be a strong advocate for the person to continue to live an inclusive and fulfilled life until they are no longer able to do so.

Behavior: What Could It Mean?

Often when we hear “behavior” we roll our eyes, knowing we have to deal with Janice and her behavior of the day. But behavior can be so many different things. We all display it, often we use it instead of words. Everyone knows what screaming and stomping the floor signifies. A definition of behavior is: the way in which an animal or person acts in response to a particular situation or stimulus.

Instead of labeling people as having bad or uncontrolled behavior, maybe we should play detective. If a person cannot use words to communicate, behavior is often their only means of getting their point across. We all communicate non-verbally and behavior is often how we do that.

If a person cannot use words to communicate, behavior is often their only means of getting their point across.

This non-verbal response is so often a form of communication. It is so frustrating for the person to train every new staff member. When traveling coast to coast training, I ask if anyone has turnover in their agency and every hand goes up! The person being supported is constantly training new staff about what they are attempting to communicate, and it really is a pain in the rear for them! When you discover what a certain behavior is portraying, write it down somewhere. If the person becomes very confused and wanders every time they have a UTI, write it down somewhere. This way we can get the person treatment earlier and eliminate the behavior.

What if the person engages in head banging when the allergy counts are high, and they have a terrific sinus headache? Again, write it down somewhere accessible. Anytime someone new comes in to work, they could look at the documentation and the light bulb would immediately come on instead of the person having to suffer for days or months and be put on multiple psychotropic meds because of “behavior”.

Having a “behavior” should not mean automatically being put on more medications. It should kick in an investigative response to see what it means.

If you are interested in learning more about behaviors and how they are a form of communication, join the HRS webinar on March 14 “Actions Speak Louder than Words”. It will help you to perform your job better!

What is Sepsis?

To put it simply sepsis is a term used to describe a serious illness characterized by a bacterial infection in the bloodstream. You might’ve heard the term blood poisoning, that’s another term for sepsis.

Sources of sepsis are urinary tract infection and pneumonia. That’s why it’s so important to recognize the signs of these conditions and get them treated early. Earlier treatment of these and other infections may prevent someone from becoming septic.

If someone is getting septic, you might see them looking pale, sweaty, their heart rate may go up, they could be breathing harder, weak and confused. You might also see blotchiness of their skin and a high fever.

Sepsis is a medical emergency and needs to be treated immediately. Every hour that treatment is delayed increases the risk of death by 10 percent. To use a phrase you probably heard In other webinars and e-learning modules by HRS U “when in doubt, send them out!” That’s an important thing to remember.

Join us for our upcoming webinar “The Fatal Five, Plus!”. In that webinar you’ll learn about sepsis and several other very important medical conditions that are common in people with intellectual and developmental disabilities. You’ll learn how to recognize them early and help people that you support live happier and healthier lives.

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://replacingrisk.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.