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.

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.

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:

  1. Confusion or problems with recent memory. Long term memory is generally not affected.
  2. Getting lost in familiar places.
  3. Wandering or elopement.
  4. Decline in ability to assist with or independently complete activities of daily living, including toileting.
  5. Inappropriate emotional response—crying when they are happy or clapping and smiling when there is a solemn occasion.
  6. Unable to follow simple instructions.
  7. Loss of ability to identify objects.
  8. 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.

Physical Supports

When you think of physical supports, do you only think of things like wedges, custom fit wheel chairs and seat belts? If that’s the case, you are missing out on a lot of things you can do to improve the lives of the people you serve.

Physical Supports allows you to provide the external supports necessary throughout the 24-hour day to help the person become more functional. Think about the supports you need throughout the day. Are you a little on the shorter side and need someone else to reach the top shelf of the cabinet? What about an extra pillow at night to prop up your arm so it doesn’t go to sleep? Glasses in order to read? These are very minor, but they are still physical supports.

When we are on a diet, we don’t just diet 3 days a week or only at meals then binge the rest of the time. It’s the same principle when a person is getting physical therapy: we can’t just let them be inactive and have therapy 3 times a week. During the time they are not actively receiving P.T. we can be placing the person in ACTIVE or WORKING positions. If a dead person could maintain the position, it is not an “active” or “working” position. Just lying on your side is not an active position. Putting someone into a prone on forearms position so that they have to hold their head up is a working position.

Physical Supports allows you to provide the external supports necessary throughout the 24-hour day to help the person become more functional.

We often can see these positions in infants as they develop. The infant will start raising its arms up or holding up their head on their own. They can’t hold these positions for long until they build up strength. They are building against gravity. A person that has a contracture in an elbow for instance, may have their arm placed in a working position that allows gravitational force to help move the arm down into a more usable position.

There are also physical supports that are not active. Positioning a person to prevent pressure injuries is a physical support. Sometimes we do it with special equipment, sometimes it is just with bed pillows. Just know that we are positioning them for prevention when they are in EVERY position throughout their entire day, not just at night.

Physical supports can help prevent pneumonia, help with bowel function, keep skin healthy, help the person to become more independent and many, many other things. Please keep in mind that even the most minor change can make an enormous difference in someone’s life. 

Using Standardized Tools

Nurses are very familiar with evidence-based practice. It is using the most recent and best evidence in the decision-making process for patient care. Part of evidence-based practice is using the most current standardized tools for assessment or screenings in determining individualized risks.

There are many assessments and screenings that are completed on individuals with IDD. Some are completed by behavior analysts, some by QDDPs and yet others by nurses or other members of the interdisciplinary team. It is important that standardized assessments/screenings be used. Utilizing a standardized assessment or screening means it has been tested and the results have been validated. A validated tool means it really does what it is supposed to do. If a tool has been validated to screen for depression, the result truly determines if the person meets criteria for depression or not.

Interrater reliability is also a key factor to look for when utilizing any assessment/screen. If Person A screens Individual XYZ, and Person B also screens that same individual, the results should be the same. Interrater reliability means that two people given the same information should get the same results. This shows the tool is not open to wide interpretation.

There are many standardized tools that are used in the field of IDD. Many we know by the acronyms only and if we do not personally administer the tools, we may not know what those abbreviations stand for or what the tools are even used for.

A validated tool means it really does what it is supposed to do. If a tool has been validated to screen for depression, the result truly determines if the person meets criteria for depression or not.

Here are some of the common ones:

  • Abnormal Involuntary Movement Scale (AIMS): A scale used to determine if signs or symptoms of tardive dyskinesia are present. Get AIMS Tool
  • Braden Scale: An assessment to determine a person’s risk for developing pressure ulcers. It evaluates 6 areas that contribute to risk. Get Braden Scale
  • Bristol Stool Chart: A chart of standard descriptions for bowel movements. It describes seven different types of bowel movements and indicates what constipation, diarrhea and normal stool looks like. Get Bristol Stool Chart
  • Dyskinesia Identification System Condensed User Scale (DISCUS): Another scale used to determine if signs or symptoms of tardive dyskinesia are present. Get the DISCUS Tool
  • Health Risk Screening Tool (HRST): A screening tool to determine individual health risk and identify early health destabilization. See HRST Tool
  • Inventory for Client and Agency Planning (ICAP): Measures motor skills, personal living skills, community living skills, social and communication skills, and broad independence as well as eight categories of maladaptive behavior. See ICAP Tool
  • Monitoring of Side Effects Scale (MOSES) – Measures medication side effects, particularly psychiatric medications. Get MOSES Tool
  • Supports Intensity Scale-A (SIS-A): Measures the individual’s support needs in personal, work-related, and social activities, in order to identify and describe the types and intensity of the supports an individual requires. See SIS Tool

This short list describes just some of the standardized tools that you may find useful (or are used) in your setting. Hopefully this helps untangle all those abbreviations!

Quality Improvement

Quality – what is it? Most people will say they can’t describe or define it, but they know it when they see it. Do you know what quality is? Do you practice continuous quality improvement in your daily work? Does your agency have a formal program? Whew, that’s a lot of questions, let’s see if we can answer some of them.

“Quality” as defined by the Merriam Webster dictionary is “a degree of excellence.” In the BusinessDictionary.com it is, “a measure of excellence or a state of being free from defects, deficiencies and significant variations.” Depending on our own personal standards, excellence is nebulous and may be very individualized. What we are striving for is excellence in providing supports to individuals who are physically or mentally disabled or challenged. We want both quality of life and quality of health. If we work hard enough and stay aware, we can achieve both.

In all our everyday activities, whether at work or in our personal lives, we should always practice continuous quality improvement. Being better today than yesterday is sometimes a struggle. Maybe you’re happy with the status quo and don’t want to change. There is an old saying that, “no one likes change except a baby with a dirty diaper”. Change is difficult, it takes us out of our comfort zones sometimes. But if you make small, slow changes, it can be easy and fun.

In all our everyday activities, whether at work or in our personal lives, we should always practice continuous quality improvement.

The first thing to practicing quality improvement is to recognize that change is needed. Some agencies are still not practicing person centered thinking or using current terminology. I know that politically-correct terms seem to alter daily, but you can always ask a person what they wish to be called, or how they want to be addressed. If you are still using the terminology “mental retardation,” it is time for a change. The correct overall categorical terminology is “intellectually disabled” or “intellectually and developmentally disabled.” There is a federal law that mandates that terminology replaces the term ‘mental retardation’ with “intellectual disability” (federal statute, Public Law 111-256, Rosa’s law.) You can start your quality change by teaching others about this wording. Is speaking out to others not your thing? Well, start with one person and tell them. Then read up on why it is important. Then tell a group of two people, then continue to spread the word and grow from there.

Another quality improvement may be looking at meal practices. Is there a nutritious meal planned? Does it meet the current “my plate” guidelines? If not, how can you change that? What are ways that you can make eating salads and vegetables more appealing? Read and research to get some ideas and tips. Many of you are on Facebook or Pinterest or Twitter. Follow some social media pages related to nutrition. Save or write down some of the recipes posted. For example, I found an excellent recipe for pizza crust using cauliflower and parmesan cheese. A coworker’s four-year-old child HATES vegetables and yet ate almost a whole pizza with this crust. Someone hate salads? Add tomatoes and yellow or orange peppers strips to liven it up- adding color makes food more appealing. Research the “my plate” guidelines at https://www.choosemyplate.gov/.

These are just some examples but there are many ways you can take steps to improve the quality of your own work. Be the first and set the example! Step up and make the necessary changes to improve, even if it may be uncomfortable.