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Autism’s Change to Autism Spectrum Disorder

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Exam

Exam

LATE Dementia, the Alzheimer Mimic

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Exam Probiotics

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Prebiotic, and Synbiotic Supplements … Huh?

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Exam A Gut Reaction

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A Gut Reaction:

An overview of the gastrointestinal system and what can go wrong with it

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Incident Reporting: Getting It Right

Incident Reporting: Getting It Right

Author: Mark Parkinson BsPharm: President AFC-CE

Credit Hours 1- Approximate time required: 60 min.

Educational Goal

Show how incident reports are a caregiving tool that leads to easier caregiving.

Educational Objectives

Explain about profession and amateur attitudes about towards incident reports.

Quote state regulations

Show how to effectively fill out and utilize incident reports

Procedure:

Read the course materials. 2. Click on exam portal [Take Exam]. 3. If you have not done so yet fill in Register form (username must be the name you want on your CE certificate). 4. Log in 5. Take exam. 6. Click on [Show Results] when done and follow the instructions that appear. 7. A score of 70% or better is considered passing and a Certificate of Completion will be generated for your records.

Disclaimer

The information presented in this activity is not meant to serve as a guideline for patient management. All procedures, medications, or other courses of diagnosis or treatment discussed or suggested in this article should not be used by care providers without evaluation of their patients’ Doctor. Some conditions and possible contraindications may be of concern. All applicable manufacturers’ product information should be reviewed before use. The author and publisher of this continuing education program have made all reasonable efforts to ensure that all information contained herein is accurate in accordance with the latest available scientific knowledge at the time of acceptance for publication. Nutritional products discussed are not intended for the diagnosis, treatment, cure, or prevention of any disease.

Incident Reporting: Getting It Right

When I first became an adult foster care provider back in the ‘80s, there were few, if any, regulations governing the industry. As I look back, the freedom of less regulation was a mixed blessing. Yes, I enjoyed not being told what to do, but it also left me wide open for conflict. Without regulation, any incident or harmful occurrence would lead to disputes and tension with the county. They became the enemy and I thought it was best to keep them in the dark as much as possible. It was not a very professional attitude, I admit. It closed the door on any help that the county could have given me. It also created a climate where erroneous methods never got addressed. With such an attitude, improvement and innovation got very stifled. How can you improve if you hide and deny every problem that comes along?

Today, regulations are a fact of the industry, but I have learned that is not necessarily a bad thing. Take, for instance, incident reporting. At first glance it appears that you are telling on yourself. Why would you want to send out a report on any problem that you’re having? Won’t that just get you in trouble? That is the common reaction of amateurs and the inexperienced. Professionals, however, view incident reports as just another caregiver tool that helps them identify the root cause of problems. Once identified, practices and systems can be improved, which eliminates the root cause of the problem. In doing so, this will naturally prevent the error from reoccurring in the future. If utilized correctly, incident reports may actually keep you from getting in trouble in the future. It’s a blessing, not a curse.

Whether you love them or hate them, incident reports are required to be filled out by government mandate. If you want to be licensed (and thus make a living) you have to agree to fill them out. If you ignore them or do them incorrectly, you may lose your license.

DHS Administrative Rules Chapter 411 Division 360

Since you are agreeing to follow the administrative rules you might as well know what they say.

411-360-0180 General Practices (15):

(15) Complete an incident report as described in section:

(A)

TYPES OF INCIDENTS. A foster care provider must complete an incident report for all of the following:
1. Any allegation of abuse as defined in OAR 411-317-0000.
2. Death or serious illness, injury, or accident, requiring inpatient or emergency hospitalization.
3. An individual is away from the home without support beyond the time frames established by their ISP team.
4. Use of an emergency physical restraint.
5. Use of a safeguarding intervention or safeguarding equipment.
6. Unusual incident as defined in OAR 411-317-000
INCIDENT REPORT REQUIREMENTS. An incident report must include all of the following information:
1. Name of the individual who is the subject of the incident.
2. Date, time, duration, type, and location of the incident.
3. Conditions prior to, or leading to, the incident.
4. Detailed description of the incident, including staff response.
5. Description of injury, if injury occurred.
6. Name of staff, including their position title, and witnesses to the incident.
7. Follow-up to be taken to prevent a recurrence of the incident. The use of any emergency physical restraint must be reviewed by the licensee within two hours of application.
INCIDENT REPORTING TIMELINES.
1. A foster care provider must place an incident report in the individual's record and provide a copy to the individual's case manager, and as applicable by their legal representative, in accordance with the following timelines:
  1. ABUSE. An incident report documenting abuse must be provided within five business days from the date of the incident.
  2. DEATH, SERIOUS ILLNESS, INJURY, OR ACCIDENT. An incident report documenting a death or a serious illness, injury, or accident, must be provided within five business days from the date of the incident.
  3. UNAUTHORIZED ABSENCE. An incident report documenting an individual's unauthorized absence must be provided within five business days from the date of the incident.
  4. EMERGENCY PHYSICAL RESTRAINT. An incident report documenting the use of an emergency physical restraint must be provided within one business day from the date of the incident.
  5. SAFEGUARDING INTERVENTION AND SAFEGUARDING EQUIPMENT.
    1. TEMPORARY EMERGENCY SAFETY PLANS. If an individual has a Temporary Emergency Safety Plan, an incident report documenting the use of a safeguarding intervention or safeguarding equipment must be completed in accordance with the requirements outlined in the individual's Temporary Emergency Safety Plan.
    2. INJURY. An incident report documenting the use of a safeguarding intervention or safeguarding equipment, resulting in an injury, must be provided within one business day from the date of the incident.
    3. NO INJURY. An incident report documenting the use of a safeguarding intervention or safeguarding equipment, not resulting in an injury, must be provided within five business days from the date of the incident.
    4. UNUSUAL INCIDENT. An incident report documenting an unusual incident must be provided within five business days.

(B) An individual's case manager or a Department designee (when applicable) must receive complete copies of all incident reports.

(C) A copy of an incident report provided to an individual's legal representative or other service providers must have confidential information about other individuals removed or redacted as required by federal and state privacy laws.

(D) A copy of an incident report may not be provided to an individual's legal representative when the report is part of an abuse investigation.

Some Notes from the Battle Trenches

It may seem that the rules are cut-and-dried because of the precise language used, but that is not the case. There is a lot of wiggle room on what is applied and how the terms are interpreted. There is even a lot of difference of application between different government officials. It would be wise not to get angry about it. This leads to an “us against them” environment that is not conducive to running a successful business. I’ve always found that establishing a good relationship with those in authority always leads to a greater latitude in permissions to act. It’s all about developing trust. If they don’t trust you, a stricter application of the rules is applied. It’s just that simple and is part of a normal human reaction; try to use that reaction to your advantage. Develop trust with those in authority and your job gets much easier. If you still are having trouble letting go of the “us versus them” mentality, ask yourself this question: Who gets the bigger traffic fine? The jerk who yells at the traffic cop and judge? Or the cooperative, humble, and grateful offender?

How to Effectively Fill Out an Incident Report

Start with the Right Frame of Mind

Perception influences reality. A negative fearful frame of mind compared to a positive and cooperative frame of thought affects how much benefit is derived from an incident report. A more effective way to fill out the form is to realize that incident reports are not a weapon that leads to destruction. It is a management tool that leads to improvement. Negative minds don’t look for benefit, positive minds do. If you are business owner with employees, you have to work hard at this so your people will cooperate. Nothing turns off cooperation faster than chewing someone out after an incident report is filed. (That’s a lesson that county officials need to be reminded of now and then.)

“Just the Facts, Ma’am”

That is a line made famous by Jack Webb’s character Joe Friday from the TV show Dragnet. He used it to filter out assumption, speculation, and guesses from witness statements. Similarly, incident reports are a simple statement of the facts. It is a nonjudgmental summary of events as you witnessed them. Do not write down any conclusions or assign any blame.

What does that look like?

Monday at 11:30 Mary Smith left the house unattended and was gone for three hours. After a search of the neighborhood, Jane Jones found and escorted the resident back home. No injuries or other incidents were observed.

Not – Mary Smith got agitated because her son brought his kids and they were too noisy. She took off because the son left the door open and was more concerned about his own kids and not his mom’s welfare.

If you didn’t see it, don’t write it as if you did. If there were witnesses, put their comments in quotation marks and reference their name. Remember, don’t draw any conclusions from the remarks.

Henry Kaplan, a fellow resident, reported, “I heard Mary’s son yell at her when she got upset about the kids misbehaving.” He witnessed the incident just before she left the home.

Not – The kids got her upset and that made the son angry. He was abusive to her which made her want to run away.

The benefit of “just the facts” is that you get to tell exactly what happened up front, before any conclusions are jumped to. You can get to what actually happened much faster and draw the correct conclusions after properly studying the facts. You will spend less time trying to correct an issue that may not have even occurred.

In his book The 7 Habits of Highly Effective People: Powerful Lessons in Personal Change, Stephen Covey states, “For every thousand hacking at the leaves of evil, there is one striking at the root.” A correctly filled-out, factual, non-judgmental report can help you get to the root of the problem faster.

Timeliness Counts

Incident reports must be written while memories are fresh. The human mind is easily distracted. We forget things easily as new thoughts push out the old. Not every fact makes it to our long-term memory. This leaves holes in the story. Often, our brain subconsciously knows that there are holes and fills them in with substituted facts. These false facts are filled in because that is what the subconscious mind wants us to believe. It’s what makes sense at the time. Our conscious mind is not aware that a substitution of facts took place. All it knows is that the flow of thoughts seems to fit together.

Also, a timely presentation of the facts prevents wrong conclusions from being formed. If you wait until later to file a report, assumptions will have already been made and it will be harder to see past an incorrect conclusion. That is true for your part, the witness, the boss, the family, and everyone else concerned. In the absence of timely facts people will make up their own story.

Finally, late reports make you look like you’re trying to hide something. You don’t want to go there. On the other hand, timely reports make it look like you’re on top of things. So, take care of immediate safety concerns and then write your report and get it to the right people quickly.

Follow Up

Now that you’ve filed the report, what are you going to do — nothing? Are you hoping that the incident won’t happen again? Are you going to let it sit there and wait to see what happens? Are you hoping that nobody will notice? That’s what amateur caregivers do. Doing nothing is a missed business opportunity. Professionals view incident reports as vital feedback on their caregiving practices. Successful businesses view incident reports as critical operational feedback that is used to improve their product. Successful business owners know that no improvements means that they will eventually fall behind the competition. You can bet that your competition is using this important data to try to out-compete you.

More Notes From the Business Trenches

Here is what I suggest that you do to get the full benefit out of incident reports: Treat an incident just as you would if it were a report on the appearance of symptoms in one of your residents. This time, the business is the patient and you’re the doctor. Ask questions to find out what is really going on. Is it serious? What are the contributing factors? What are the circumstances that will make it happen again? Do you see any hidden patterns? Once you’ve got a good handle on it, you’re going to want to conduct a therapeutic experiment to see if you can cure the patient. Find something to measure, implement a change, and record and review the results.

What does that look like?

After sending your report about Mary Smith, you start to look at the circumstances. Mary wandered off because she got agitated. She got agitated when her son yelled, because the kids were making her nervous. The son yelled because it was hard for him to control the kids. The kids got out of control because they got bored.

The therapeutic experiment: supply visiting children with entertaining distractions, or supply a plate of cookies, or keep staff around during family visits. Measure the agitation level during and after the visit, or the kid’s annoyance factor.

Conclusion

Over the years, I have changed my opinion about incident reports. Today, I see them as a valuable caregiving tool. I view their use by others as proof of their professionalism. No one will ever be perfect all the time; incidents are going to happen. Are you going to fearfully hide, or are you going to take advantage of incident reports? I hope that I have supplied you with enough reasoning to look on incident reports more favorably. Because the fact is, a properly filled-out incident report submitted in a timely manner will give you valuable insights that will drive improvement. Improperly filled-out or late reports will only land you in trouble with licensors, families, and the courts. Just view them as another professional caregiving tool, not as something that leads to punishment.

As always, good luck in your caregiving efforts.

Mark Parkinson, BSPharm

References:

Adult Foster Homes for Individuals with Intellectual or Developmental Disability. Oregon Administrative Rules, Chapter 411, Division 360. https://www.dhs.state.or.us/policy/spd/rules/411_360.pdf

Incident Reports. The Climate Change and Public Health Law Site. 2019. https://biotech.law.lsu.edu/Books/aspen/Aspen-INCIDENT.html

Hynes, JoElla MSN. Charting Checkup Don't Be Intimidated by Incident Reports. LPN2009. March/April 2009, Volume :5 Number 2, page 4 – 5. https://www.nursingcenter.com/journalarticle?Article_ID=843476&Journal_ID=522928&Issue_ID=843475

When to Report an Incident in an Assisted Living Facility. Highland Risk. 2019. https://www.highlandrisk.com/when-to-report-an-incident-in-an-assisted-living-facility/

Should I be reporting this to someone? Making sense of the Incident Reporting Requirements. Elliott Frost Leadingage Procare. ADHCC Annual Conference Apr. 2013 https://www.leadingageny.org/home/assets/File/Incident%20Reporting%20Requirements.pdf

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LATE Dementia, the Alzheimer Mimic

LATE Dementia, the Alzheimer Mimic

Author: Mark Parkinson BsPharm: President AFC-CE

Credit Hours 1- Approximate time required: 60 min.

Educational Goal

Educate caregivers about a newly describe form of dementia Limbic-predominant age-related TDP-43 encephalopathy. (LATE)

Educational Objectives

Provide variety in dementia training.

Describe LATE dementia

Tell how the discovery of LATE dementia effects medical research

Provide caregiver techniques in regard to residents who show signs of dementia.

Procedure:

Disclaimer

LATE Dementia, the Alzheimer Mimic

LATE Dementia Alzheimer's Disease

Something New in Dementia

Continuing education courses about dementia are constants in the adult foster care industry. You all have read the same concepts over and over again. This time, though, the dementia training will be different. Something new has come up that is the cutting edge of medical science. For now, it’s called limbic-predominant age-related TDP-43 encephalopathy, or LATE Dementia. The reason it warrants a CE course of its own for caregivers is that it looks and acts just like Alzheimer’s disease. Its discovery is impacting Alzheimer’s research and may have an impact on future Alzheimer’s therapy. Besides that, it’s about time you had some variety in dementia-related courses.

An article about LATE dementia was published this year in Oxford Academic’s Brain journal. The news is spreading quickly, and the medical science community’s reaction to it gives an interesting insight into how medical research is done. The article was the result of an international consensus of researchers from Britain’s Rush University Medical Center and scientists from several National Institutes of Health-funded institutions in the United States. For the advanced science geeks among you, the full article can be read for free at the following link: https://academic.oup.com/brain/article/142/6/1503/5481202

Fair warning, though, it’s pretty advanced reading (kind of refreshing in a weird way for the advanced medical professional). For the rest of us non-science geeks I will cover the details here and talk about its implications in more everyday language.

Alzheimer’s Disease Symptoms

As you know, Alzheimer’s is a difficult-to-diagnose disease that is predominantly recognized by the dementia symptoms of:

Increased memory loss and confusion
Inability to learn new things
Difficulty with language and problems with reading, writing, and working with numbers
Difficulty organizing thoughts and thinking logically
Shortened attention span
Problems coping with new situations
Difficulty carrying out multistep tasks, such as getting dressed
Problems recognizing family and friends
Hallucinations, delusions, and paranoia
Impulsive behavior such as undressing at inappropriate times or places, or using vulgar language
Inappropriate outbursts of anger
Restlessness, agitation, anxiety, tearfulness, or wandering—especially in the late afternoon or evening
Repetitive statements or movements and occasional muscle twitches

These signs of Alzheimer’s disease may be caused by the loss of brain matter due to changes in certain proteins in the brain. It is thought that the buildup of tau protein tangles and plaques of beta-amyloids (leftover fragment of larger proteins) interfere with the brain tissue’s normal functions and the brain cells die. The loss of brain cells leads to loss of brain function, causing the dementia symptoms.

You may have noticed I used the phrases “may be” and “it is thought.” There is a large amount of uncertainty in what is happening in the brain of dementia patients. There are many cases where dementia symptoms have occurred and there is no buildup of tau tangles and beta-amyloid plaques. These cases have baffled Alzheimer’s researchers, leading them to search for other possible causes of dementia. After months and years of study, another cause of dementia symptoms has been identified and named: deposits of a misfolded protein called TDP-43 in the brain.

TDP-43 Error and the Cause of Disease

The transactive response DNA-binding protein of 43 kDa, or TDP-43 for short, is a protein that helps regulate gene expressions of DNA and RNA. Think of it as a chemical tool the brain cell uses in getting its work done in the nucleus. TDP-43 is a highly folded molecule that attaches to DNA and RNA in specific ways in order for it to work properly.

Unfortunately, a mutation can and does occur in a cell’s DNA and a misfolded TDP-43 is created. The misfolding error changes the protein’s shape. The change in shape interferes with the protein’s proper function. As the misfolded TDP-43 accumulates in the brain, malfunctions start to occur, resulting in memory loss and thinking skill problems. Misfolded TDP-43 malfunction is also a factor in amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) and frontotemporal lobar degeneration.

Recent brain tissue studies have found that misfolded TDP-43 protein is very common in older adults — about one-quarter of people over 85 have enough misfolded TDP-43 protein to affect activities of daily living. In my opinion, this may partially explain the aging process of the brain.

LATE Dementia

Misfolded TDP-43 is a major factor in LATE-caused dementia. As the malfunctioning protein starts to accumulate, protein tangles start to appear outside of the nucleus. When tangles accumulate in the cells of limbic regions of the brain, dementia symptoms start to occur. The limbic system of the brain is heavily involved in memory recall and memory storage, emotions, and survival instincts. As damage in the limbic regions increases, so does memory loss. Emotions such as fear and anger become harder to manage. Changes in personality are seen and the ability to think clearly decreases. These are all classic signs of dementia.

LATE dementia progresses in three phases.

Stage 1 – TDP-43 accumulates in the amygdala.
Stage 2 – TDP tangles spreads to the hippocampus.
Stage 3 –TDP tangles have started to accumulate in the middle frontal gyrus of the frontal lobe of the brain.

So far, research shows that the onset of LATE dementia occurs later in life. In brain autopsies, the condition is seen in “the oldest of the old.” The reason for the age relationship was not discussed in the articles I researched. I speculate that it is part of the age-related breakdown of the repair mechanisms of the brain. If the breakdown occurs in the limbic system, you get dementia. That is just a guess on my part, though.

Another limitation I found in the articles I read was that currently the only way to make a certain diagnosis of LATE dementia is through a brain autopsy. Also, there is no cure or even a way to slow LATE dementia down. Not very useful for living patients with dementia symptoms. Clearly, more work needs to be done. But medical science has to start somewhere, and the discovery of LATE dementia is still very significant. It gives hope that other discoveries may lead to other advances in understanding dementia, and maybe one day we’ll find a remedy for it.

Caregivers and LATE Dementia

So, if you can’t detect LATE dementia without a brain autopsy (that’s not going to happen very often) and you can’t cure it, why bother writing a course about it? What good does knowing all this do for caregivers? Good questions. Kind of cynical thinking, but valid reasoning nonetheless.

There are a couple of reasons I wrote this course. I thought that you would like a break from the standard dementia course. Don’t you get tired of reading the same thing over and over again? Also, you have to admit, learning something brand-new and interesting in your chosen career field is kind of cool. But beyond the entertainment value, there are practical applications for caregivers in knowing about another cause of dementia.

Firstly, I have always considered adult foster care providers as medical professionals. You are not just babysitters but valuable members of the medical caregiving spectrum. In order for you to interact effectively with other members of the medical community, you have to be up-to-date with your understanding of medicine. Also, you are the first point of contact with the patient and their family. If they hear of LATE dementia, they will understandably have questions and hopes for new therapeutic options. You can provide those answers and help them to have realistic expectations. Dashed hopes only leads to depression and anger. Besides, it’s just good business sense to be more knowledgeable than your competition.

Late Dementia Versus Alzheimer’s Disease

Medically speaking, the discovery of LATE is very significant across all causes of dementia, including Alzheimer’s disease. It has filled in gaps in our understanding and changed the way we perceive dementia. We now know that LATE mimics Alzheimer’s-caused dementia so closely that we didn’t even know it was there. The only visible difference between the two is that LATE occurs primarily in adults over 80 years old. Autopsy studies show that between 20 to 50 percent of people in this age group have signs of TDP-43 tangles. In contrast, the first signs of Alzheimer’s start to manifest themselves decades earlier. Other than the age thing, it’s almost impossible to tell the difference between LATE and Alzheimer’s in live patients.

Because of this fact, researchers are starting to wonder if what was once diagnosed as Alzheimer’s was actually LATE instead. It has been estimated that 15 to 20 percent of Alzheimer’s cases should actually have been diagnosed as LATE. To complicate things even further, they have found several cases where both Alzheimer’s and LATE pathology caused the dementia symptoms.

So why should we even care? Dementia is dementia, after all. Calling it LATE or Alzheimer’s doesn’t really affect how we care for the patient. In caregiving, that’s true, but in medical research the possibility that cases were mislabeled changes everything. All the conclusions drawn from all previous studies could now be wrong. It’s like we have to start all over again in many ways.

For example, consider a drug trial that targets the Alzheimer’s disease process. They give the drug to a thousand dementia patients and the results are disappointing. It worked for some patients but had no effect on others. The researchers then concluded that the drug doesn’t work for enough Alzheimer’s patients, so they went in a different direction.

Suppose now that those non-responders didn’t have Alzheimer’s at all but had LATE instead? The conclusion that the drug didn’t work was actually wrong. It did work; the poor responses were a result of giving the drug to the wrong type of patient. You can’t treat a disease that wasn’t there in the first place.

Going forward, dementia research now has to take LATE into consideration. Old projects could be reevaluated. Abandoned lines of thought could be resurrected. The challenge now is determining who has LATE dementia and who has Alzheimer’s dementia so that proper studies can be done. The race is on now to find biological markers for LATE that doesn’t involve cutting out a portion of a living brain and putting it under a microscope.

LATE Therapy

I know that information that the caregiver can use in their work is kind of skinny in this article, so let’s put some meat on the bone for you to chew on.

Brain cell damage due to LATE is irreversible. You can’t regrow brain tissue that has been lost. That leaves utilizing what brain function remains in the best way possible. The overriding caregiving principle is that YOU have to change and adapt because the resident can’t. The disease has robbed them of the mental capacities they once had.

Here are some caregiver tips, ideas and tools that will help.

Create a reliable daily routine with small rituals (less change to cope with).
Allow for unusual behavior. Reduce your rejection of bizarre behavior unless it endangers someone.
Keep the lines of communication open with family, friends, and loved ones. Educate them so there is less social rejection.
Keep the home well-lit using soft natural light. Avoid fluorescent lights, which can agitate people with dementia.
Demonstrate what you want the patient to do (takes less brain power to understand).
Lay out the clothes in the right sequence (less decision-making needed).
Clearly mark the toilet, e.g., a colorful door with a symbol (visual cue again. You can do the same with other activities of daily living tasks).
Make going to the toilet part of the daily routine.
The inside of the toilet bowl should be dark (e.g., by coloring the water). A totally white toilet does not allow orientation, especially for men while urinating in a standing position.
Restlessness sometimes indicates a need to go to the toilet.
Control napping to avoid sundowners.
Speak slowly, not too loud, using a low-pitched voice.
Face the person when you are speaking to them.
Use short, familiar words and short, simple sentences that clearly express what you want to say.
Allow sufficient time to respond. If the person does not respond, repeat your question with the same wording as before.
Ask only one question or give one instruction at a time. Break tasks down into smaller steps that are more manageable. For instance, even activities as simple as tooth brushing are made up of many smaller tasks, such as picking up the toothpaste, taking off the cap, picking up the toothbrush, putting toothpaste on the brush, etc.
Don’t confront … redirect instead. Avoid saying "don't" or giving negative commands. For example, instead of saying "Don't go in that room," try saying "Let's go over here."
Avoid questions that require a lot of thought, memory, and words.
Avoid instructions that require the patient to remember more than one action at a time (for example, avoid questions of the type "What film did you see last night?" or "What did you do this morning?").
Avoid arguing or disagreeing with the patient. Since dementia affects reason and logic, and arguing with someone requires logic, arguing is pointless.
Address the feelings of a person with dementia rather than focusing on the facts or accuracy of what the person is saying. Avoid reorienting the person to reality if not necessary. For instance, if someone with dementia thinks that the year is 1970, and this is not hurting anyone, refrain from trying to convince them it’s not. Instead, try to identify feelings related to 1970 by asking more about it.
Keep things peaceful and simple.

Thanks to Dementia.com for most of these tips. For even more, visit their website at https://www.dementia.com/coping-with.html.

Conclusion

The neurodegenerative syndrome that is dementia can be caused by a number of different factors. Despite the popular belief, not all dementia is caused by Alzheimer’s disease. The discovery of LATE is filling in many gaps in our understanding of the condition. The challenge now for researchers is to find ways of identifying cases in live patients so that studies can be more accurate and effective. For caregivers, the challenge is to understand LATE and communicate with other medical professionals, residents, and their families effectively. Caregiving in dementia is about adapting to the client’s reducing mental capacities.

I hope you enjoyed the article and got some benefit out of it.

As always, good luck in your caregiving efforts.

Mark Parkinson, BSPharm

References:

TDP-43. Alzpedia Alzforum. 2019. https://www.alzforum.org/alzpedia/tdp-43

Peter T Nelson et al. Limbic-predominant age-related TDP-43 encephalopathy (LATE): consensus working group report. Brain. Volume 142, Issue 6 June 2019. https://academic.oup.com/brain/article/142/6/1503/5481202

Researchers define Alzheimer's-like brain disorder. Science Daily. Apr.30 2019. https://www.sciencedaily.com/releases/2019/04/190430121800.htm

We Totally Missed a Different Kind of Dementia for Decades. SciSchow Psych. Sep. 26 2019. https://www.youtube.com/watch?v=CC2LG5TQn_4

Scientists Identify New Type of Dementia That Mimics Alzheimer’s. Being Patient. May 1 2019 https://www.beingpatient.com/late-dementia/

Coping with dementia. Dementia.com. 2019. https://www.dementia.com/coping-with.html

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Dealing with Migraines

Dealing with Migraines

Author: Mark Parkinson BsPharm: President AFC-CE

Credit Hours 2- Approximate time required: 120 min.

Educational Goal

Provide instruction about the Migraine disorder and how care to for residents who suffer from Migraine headaches

Educational Objectives

Provide migraine statistics

Define Migraine disorder and improve caregiver understanding

State the need a bridge between migraine suffers and proper care

Tell about the management principles of the Migraine disorder

Procedure:

Disclaimer

Dealing with Migraines

Making a difference in the lives of the most needy is what helps foster care providers get up each morning and face a new day. Sometimes, though, a caregiving challenge arises that seems overwhelming. Boy, I hated those days when I was a caregiver. Everyone looks at you like you’re some kind of miracle worker that should know what do to solve any problem.

What do you do when the caregiving challenge is a resident with a headache so severe that it causes nausea and vomiting? What do you do when someone in your charge develops a searing, debilitating, throbbing head pain that almost totally incapacitates them? What do you do when the headaches happen over and over and over again despite your best efforts? That’s the foster caregiving nightmare called a migraine headache. What do you do about migraines? You get busy and learn about them and how to best manage them.

Migraine Facts

Prevalence

Migraine is a very common neurological disorder of the brain. It afflicts 39 million people in the U.S. and 1 billion worldwide, making it the third most prevalent illness in the world. In the United States, 12 percent of the population suffer from migraines. It is estimated that one in four households includes someone who has endured a migraine.

Gender

Men, women, and children can suffer from a migraine. In America 18 percent of women, 6 percent of men, and 10 percent of children have experienced an episode. Adult women are three times more likely than men to have a migraine. Up to 30 percent of women will have at least one episode in their lifetime.

Age

Migraine can occur at any age, with cases having been reported in children as young as 18 months. Migraine headaches occur most frequently between the ages of 18 to 44. Before puberty, boys are affected more than girls, but during adolescence, the risk of migraine and its severity rises in girls. Half of all migraine sufferers have their first attack before the age of 12. After the age of 50 the frequency of headaches and the severity of the episodes seem to reduce.

Genetics

Migraines tends to run in families. Ninety percent of sufferers also have a family history of occurrences. Children who have one parent suffering from a migraine have a 50 percent chance of having one too. The chance of occurrence for a child who has both parents with a history of migraines increases to 75 percent.

Frequency

Every 10 seconds, someone in the U.S. goes to the emergency room complaining of head pain, out of which approximately 1.2 million visits are for acute migraine attacks. More than 4 million people have chronic daily migraines, with at least 15 migraine days per month. However, most patients only have 1 or 2 a month.

Costs

It is estimated that migraines cost the U.S. economy 20 million a year due to direct health costs and lost time, though that figure could be a lot higher. Fewer than 5 percent of patients are seen by a healthcare provider, receive a proper diagnosis, and receive appropriate care.

More Than Just a Headache

Handling the nightmare that is migraine starts with gaining a proper caregiver perspective on what it is. Most of what you probably know about migraine comes from popular cultural references and is probably wrong. Despite what caregivers have been told, migraine is not just a severe headache that comes and goes. It is a primary brain disorder that causes a headache. Even how you use the word is probably wrong. “I’m having a migraine” is no more accurate than saying “I’m having diabetes.” It is not an event, it is a condition.

The migraine disorder is not fully understood yet by medical science. It most likely involves how the nerves and blood system of the brain develop in certain parts of the brain. Overactive or overly sensitive nerves send out signals to the trigeminal nerve, a major nerve that supplies sensations to the head and face. In turn, the trigeminal nerve stimulates other reactions including the release of chemicals that cause blood vessels in the lining of the brain to swell. The inflammation greatly contributes to the pain experienced in a migraine headache. This condition makes patients with migraine more suspectable to biological and environmental triggers that result in a special kind of moderate to severe headache called a migraine headache. There may yet be other contributing factors that remain undiscovered.

Having a migraine may be an inaccurate way to describe what is actually going on, but the concept is so ingrained in our society that there is little point in trying to correct it. As long as the caregiver starts off with the proper understanding, therapeutic efforts can be more effective. From now on in this article if I say “having a migraine” you’ll know what that I really mean.

Migraine Headaches

Migraine headaches are different from regular headaches. How you recognize them, how you treat them, and how you prevent them is all different. You don’t just give a resident an aspirin when the migraine comes on and expect that everything will be okay, because it won’t be. Fortunately, there are ways to manage migraines if caregivers can spot them and know what to do.

Recognizing Migraines

There is significant variability in how migraine headaches are experienced. There are patterns in the signs and symptoms, though, that set apart migraines from regular headaches. Typically, migraine headaches are felt on one side of the head, are throbbing, and can last from a few hours to three days. Often other symptoms accompany the headache; these may include nausea, vomiting, and sensitivity to light, sound, or smell. The pain is generally made worse by physical activity. Also, migraine headaches occur in phases. Certain signs and symptoms may happen before, during, and afterward the migraine. There are also predictable events that trigger the onset of a migraine. The phases of a migraine are:

Prodrome phase

Because the brain controls many things, when migraine disordered cells are triggered, other bodily effects can result before a headache occurs. Prodromal symptoms can be seen in up to 60 percent of patients. They can occur between two hours to two days before the pain phase and can be used as a sign that a migraine is coming on. The symptoms are as varied as individuals are, so it’s best to keep tract of events before the migraine comes on. Look for things like altered mood, irritability, depression or euphoria, fatigue, cravings for certain foods, stiff muscles (especially in the neck), constipation or diarrhea, and sensitivity to smells or noise.

Aura Phase

Up to one-third of people with migraine headaches experience what is called an aura — a short period of sensory disturbances that signals that the headache will soon occur. They usually last less than 60 minutes. Ninety-nine percent of aura cases involve impaired visual effects. Other sensory disturbances are seen in about 30–40 percent of auras.

Visual auras often affect just a portion of the field of vision and can flicker in and out. They can appear as zigzagging lines of black or white that start in the center of the field of vision and extend outward. Others experience blurred spots, while others lose a portion of the visual field. All visual auras can affect the resident’s ability to perform visual tasks.

Other sensory disturbances can be feeling pins and needles in the skin on one side of the body, starting at the hand and traveling up toward the nose and mouth area. Numbness usually follows. Some patients describe tasting, smelling, seeing, or hearing things that are not there. Also, language problems and dizziness may temporarily appear.

Rarely, an aura can occur without a following headache. Known as an acephalgic or silent migraine, they can be used as an indication of the migraine disorder.

Pain Phase

This is when the actual headache starts. It begins gradually and pulses into greater intensity. Because inflamed cranial blood vessels are involved, anything that makes blood pressure and flow increase, like physical activity, will make the throbbing pain worse. Typically, the pain is only felt on one side but over 40 percent of cases experience pain on both sides. Less commonly, pain may occur primarily in the back or top of the head. The pain phase can last from four to 72 hours. In younger children, the pain phase often lasts less than one hour.

As the headache intensity grows, other symptoms start to appear. In 90 percent of cases, nausea is felt, with one-third of those resulting in vomiting. The patient is aggravated by light, sounds, or smells. Dizziness, scalp tenderness, lightheadedness, confusion, blurred vision, nasal stuffiness, diarrhea, frequent urination, pallor, or sweating may also occur. These additional symptoms appear less frequently in the elderly.

Postdrome Phase

After the migraine headache resolves, rebound symptoms can occur, like weakness, confusion, mood changes (including euphoria), GI disturbances, and tenderness in the headache area. It has been described like being hung over and can last for several days. The emotional response can range from feeling refreshed or euphoric to general malaise and depression.

A final distinction in migraine is that it is a brain function disorder and is often associated with other brain function maladies. They can include major depression, bipolar disorder, anxiety disorders, and obsessive-compulsive disorder. These psychiatric disorders are approximately two to five times more common in people without aura, and three to ten times more common in people with aura than the general public.

Triggers

There are a number of things that can set off the cascade of cellular events that can lead to migraine headaches. They include:

Hormones in women – Changes in the estrogen levels in women seen in menstrual periods, pregnancy, and menopause can trigger migraines and affect their severity. Medications that include hormones, like oral contraceptives and hormone replacement therapy, can also worsen migraines. Some women, though, find that taking hormones decreases the number of migraines they experience.
Drinks – Drinks that contain alcohol and caffeine affect brain cells and thus are known triggers for migraine headaches.
Stress – Increases in mental and physical stresses.
Overstimulating the senses – Bright lights, glaring sunshine, loud sounds, strong smells, and secondhand smoke can all set off migraine-sensitive nerves.
Changes in sleep patterns – Migraines can be triggered by getting too much sleep, not enough sleep, or jet lag.
Physical activities – An increase in activity increases several brain functions including migraines. Feeling fatigued can also be a factor.
Weather changes – A change of weather or barometric pressure can bring on a migraine.
Medications – It is a given that drugs that affect hormone levels and blood pressure will affect migraine occurrences. They include oral contraceptives, vasodilators, and nitroglycerin.
Foods and food additives – Ingredients in certain foods like aged cheeses, salty and processed foods, aspartame, and monosodium glutamate (MSG) have been observed in triggering headaches. There is also a link through the gut-brain axis and how our intestinal flora reacts with food that can send signals to the brain that will trigger a migraine.

Being the Bridge to Proper Care

It is one thing to make an overall list of the signs, symptoms, and triggers of migraine, but it’s a totally different thing diagnosing and treating the individual. If medical science doesn’t have a complete handle on what migraine disorder is, then the general public is particularly clueless. That is one of the reasons why only 5 percent of migraine patients receive proper treatment. Foster care providers can help fill the understanding gap that will lead to more patients receiving more appropriate care. It starts with recognizing that the moderate to severe headache that the resident is experiencing might be something more.

So, how can a caregiver tell a migraine headache is coming on and not just a regular headache? The answer? Being an expert on your residents and recognizing the migraine pattern of symptoms and behaviors.

First, recognizing who’s most likely to have migraines. Pay attention to patient files and family histories. If there is a history of migraines, then those are the ones that are most likely to have future migraine headaches.
Second, recognizing repeating events. If the patient does have oversensitive nerves, then headaches will occur frequently. You will notice that they may be triggered predictably by certain events.
Third, recognizing the patterns in the headaches, including what happens before and after the headache. Remember, migraine headaches occur in phases.

The Diagnosis

One of the great things about being a foster care provider is that we don’t have to come up with a diagnosis. All we have to do is suspect that the resident has migraine; the doctor has to make the diagnosis call. When our suspicions prove true, then we look like a hero for catching something that no one else did (that’s particularly satisfying, in my opinion). If the doctor doesn’t agree with your guess, it’s no big deal. Don’t stop monitoring; doctors have been known to be wrong before.

According to the International Headache Society, a migraine diagnosis can be made according to the following "5, 4, 3, 2, 1 criteria."

Five or more attacks — for migraine with aura, two attacks are sufficient for diagnosis.
Four hours to three days in duration
Two or more of the following:
- Unilateral (affecting half the head)
- Pulsating
- Moderate or severe pain intensity
- Worsened by or causing avoidance of routine physical activity
One or more of the following:
- Nausea and/or vomiting;
- Sensitivity to both light (photophobia) and sound (phonophobia)

I think it is important to point out a few things about this subject.

The vast majority of migraine sufferers have not been properly identified, diagnosed, and treated. That means most will want to just hide in a dark, quiet place or go to the ER.
Some, like mental health patients, developmentally disabled, and children who have communication problems, have never properly described what they are experiencing. You’ll have to do it for them.
Those who have experienced multiple migraines will be engrained in a particular line of thought on what it is and what it is not. Their migraine reality is shaped by the fear of a painful headache episode. Going outside their comfort zone will be very hard because of the fear of that pain.
Patients will have only called their doctor in the middle of a headache demanding an immediate remedy. Most likely, not much effort will have been made in treating migraine like a disease; rather, it’s treated like an emergency event.
There is a tendency of inexperienced doctors to not diagnose migraines unless there is an aura. Gently remind the doctors that the majority of migraines are without aura, or ask questions about all the other symptoms that you see. For example, “What about the light sensitivity and nausea, doctor, what is causing that?”
Not every migraine patient will have every phase of migraine.

Have patience with the resident, the family, and the doctor. Be the bridge between what is now happening and what needs to be happening in the future in regard to migraine disorders.

Caregiving in Migraine

There may be headache relievers but there is no cure for migraine, just management — management of the triggers, management of the patient, and management of the headache. The key to successful migraine management is you, the in-home caregiver. You are in the best position to manage all the factors that can reduce the severity and frequency of migraine episodes. The following are a few helpful suggestions and resources that I believe will be beneficial to your caregiving efforts.

Frame of Mind

Start off and continue in the right frame of mind: empathic, supportive, and flexible. Everyone experiences migraine differently and may need different kinds of support. Treatments may vary from medication, chiropractic care, alternative medication, special diets, or whatever. If it works, run with it. Don’t forget about expecting and managing the other the symptoms involved in migraine, for example vomiting. Remember, migraine is a disorder, not an event. Your emotional support during headaches will be very important.

Management of Triggers

Getting In-the-Know

The more involved you become in understanding your resident’s condition, the more likely you will be able to affect the course of the disease. A Migraine Diary will be a very effective caregiving tool in getting in-the-know. There are several free versions, or ones available at very low cost. Most are easily adaptable to a care home setting. They are designed to help identify what triggers a migraine and measure how effective therapy is. Doctors will love you if you send them patients with a filled-out migraine diary.

Check this one out, written by Hartford Healthcare.Org https://hartfordhealthcare.org/File%20Library/Services/PDFs/Headache-Center-Diary-and-Guide.pdf

The Menu

Cooking recipes from scratch helps manage ingredients that trigger migraine attacks. It will help you avoid having to prepare completely separate trigger-free meals. Nitrates, commonly found in processed meats, can be an issue. There are nitrate-free versions; you just have to look for them. Save time and just ask the grocer or butcher where they are. Once you get a good handle on food triggers, educate family members who want to bring food gifts or take their loved ones out to dinner.

Take Regular Walks

Those who read my CEs know how much I tout the benefits of taking residents for regular walks. It turns out walks are recommended for migraine trigger management, too. Mild physical activity reduces stress, a migraine trigger. It also strengthens the blood flood gradually. Those who regularly exercise become more capable of handling sudden demands on blood flow, also a known trigger of migraines.

Triggers Are Accumulative

Not all trigger events cause a migraine every time. The explanation is there seems to be a stimuli threshold that has to be crossed before migraine-effected brain cells are set off. So, if the resident accidently eats a trigger ingredient, manage all the other triggers and you might avoid the migraine. Also, if there is an increase of uncontrollable triggers like the weather or menstrual periods, be ready with extra trigger control.

Management of the Patient

Classification

Migraines are classified into several subclasses. A list of them is not that important right now, though if you do see the subclass name it might give you clues on how to manage the resident. The classifications I want to concentrate on is acute versus chronic. In the case of migraine, acute is defined as present or experienced in an intense, severe way. On the other hand, chronic is defined as having three or four acute attacks per month. These labels will help determine what medication is used. Everyone will get an abortive agent(s), which is the headache remedy. Chronic migraine sufferers might get a prophylaxis agent, which is a preventative medication. I was going to give you a list of meds but I will spare you from reading a long, boring list. Instead, I will give you a list of helpful caregiver medication management hints.

PRN and the Overused Red Flag

I know the PRN log is a pain to fill out, but in migraine it can give you very useful info. How often PRN meds are charted tells a lot about how migraines are experienced. It also helps alert you to overuse, which can actually lead to more migraines (ironic, isn’t it?). It might also be an indication that a med routine change is needed. It would be wise to get a “call the doctor” point in the frequency of PRN drug use from the prescriber.

When to Dose

Abortive agents work better if given early on. It’s easier to put out a one-alarm fire than a five-alarm fire. Don’t wait too long to give PRN meds.

Statistically, the onset of most attacks of migraine occur in the morning when you’re the busiest. The migraine may even have started before the resident woke up, so the early warnings may not be there. Be more aware of migraine symptoms in your morning routine and be ready with the abortive meds.

Preventative Medication Considerations

Medication used to prevent migraines will be familiar to you but applied in a different way. When a preventative medication is started, the doctor might begin with a fairly low dose and gradually increase the amount used depending on the patient’s response or side effects that occur. Feedback to the doctor is pretty important at this time. Monitor for effect with skill. In many instances, these agents are not used long enough. Frustration on the part of both the physician and the patient leads to frequent changing of medications. Some of these preventive agents, particularly verapamil and divalproex sodium, may take six to eight weeks before one sees a significant reduction of headache frequency and severity. Often patients have their drugs changed every couple of weeks and never give the medication an adequate trial. You can help by asking questions about sufficient trial times for each medication. Consulting a pharmacist might also help get the point across.

In migraine prevention, higher doses of calcium channel blockers and beta-blockers are needed than are used in treating hypertension so watch for side effects. Also, in tricyclic antidepressants, lower doses are used than what is seen in treating depression.

Children Medications

Many migraine relief medications contain aspirin (like Excedrin Migraine). Children and aspirin-containing products don’t mix well. The worry is about causing Reye’s syndrome. If you take care of infants, read the ingredients of all your headache remedies. If aspirin is present, bring it to the attention of the doctor. Educate family members not to give these products when the resident is with them.

Migraine Prevention Devices

There are nerve stimulation devices that are FDA-approved for migraine prevention. Insurance coverage is going to be an issue. The good thing is that there are no side effects and they can be used for children and teens.

Management of the Headache

Caregiver Tools for Headache Management

Once the migraine is triggered, caregivers have to switch gears from prevention to controlling the pain and other symptoms that you know are coming. The pressure is on you, the caregiver — not the doctor, not the home health nurse, and not the family. Here are a few ideas that I think will help you manage the headache.

Monitoring for Effect

Because of the PRN nature of headache remedies, you will have to use skill in when to apply them. That skill is developed as you pay attention to how effective the remedies are. The Migraine Diary is an essential tool in this effort. Record what you did and what effect it seemed to have. Include time frames as well. Review the records and discuss them with the resident and the doctor. Over time you can develop an effective treatment regime.

Stimulus Control

Now is the time when you have to control or eliminate all the things that can aggravate the headache that is coming on. Establish a place that is cool, quiet, and dark. Don’t make any demands on the resident and provide plenty of stress-free emotional support.

Drug Considerations

If the doctor has not spelled out a drug regime for migraine, get one. It should be more than just PRN Excedrin. Develop a more detailed plan. It’s going to be a work in progress as you report back to the doctor what works and what doesn’t. Don’t forget nausea control in the regime.

For headaches that happen at least 15 times per month, ask the doctor if medication overuse is contributing to the headache. If it is, it’s going to take two to six weeks to taper off the meds to get things under control again.

Non-Drug Therapies

Drugs are first-line therapies, but they are not the only tools in your caregiver toolbox. The following may or may not be thought of as therapy. When in doubt, get the doctor to add them to the PRN migraine management orders.

Many people find that putting gentle pressure on the head, face, and neck during a migraine can help ease the pain. Techniques to try:
Press your brow line and under your eyes.
Rub your temples and jaw in a circular motion.
Massage the base of your skull with a tennis ball.
A variety of head wraps and bands claim to ease migraine pain. They're inexpensive and might be worth a try.
Relaxation techniques.
Migraine masks. These are specially shaped cold packs worn over the face. A supply of cool compress rags would have a similar effect.
Aromatherapy (lavender oil might help).
Massaging the muscles in the neck and shoulders can help to relieve tension and alleviate migraine pain. Massage may also reduce stress.
Residents can be given a tennis ball and use it for self-massage along the shoulders and back.
Acupressure: application of pressure to specific parts of the body. Stimulating specific points of the body in this way is believed to release muscle tension and alleviate pain.

“One popular pressure point is the LI-4 point in the space between the base of the left thumb and pointer finger. Applying firm but not painful circular pressure to the LI-4 point, using the opposite hand for 5 minutes, may relieve headache pain. A 2012 study looked at 40 people who had migraines without aura. It found that pressure on the PC6 acupoint, which is located three fingers up from the base of the wrist on the inside of the arm, was effective in relieving migraine-associated nausea or vomiting associated with a migraine headache.”

Source https://www.medicalnewstoday.com/articles/322814.php#3

Conclusion

Dealing with a headache is not fun. Dealing with a migraine headache is particularly debilitating and those who suffer will need help. A resident who has migraine disorder is going to need caregiver management of their triggers, the prevention therapies, and the migraine headache themselves. Adult foster care providers will find that they are in a powerful position to manage all aspects of the disease that is called migraine. Remember, it is not an event, it’s a disorder.

As always, good luck in your caregiving efforts.

Mark Parkinson, BsPharm

References:

By S. Jähnichen (talk) - File:Brandenburger_Tor_Blaue_Stunde.jpg, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=6668865

Migraine, MayoClinic 2019. https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201

Migraine Research Organization 2019. https://migraineresearchfoundation.org/about-migraine/migraine-facts/

Migraine Diary. Hartford Healthcare,org. https://hartfordhealthcare.org/File%20Library/Services/PDFs/Headache-Center-Diary-and-Guide.pdf

Migraine Headaches. WebMD. 2019. https://www.webmd.com/migraines-headaches/migraines-headaches-migraines#1

Migraine. Wikipedia. 2019. https://en.wikipedia.org/wiki/Migraine

How to Support Someone with Migraine. Migraine Foundation. https://cdn2.hubspot.net/hubfs/2611652/How%20to%20Support%20Someone%20with%20Migraine.pdf

Sai NR Chandamuri, MD, James Abbey, MD, Jesse Vance, PharmD. Migraine Headaches. InfantRisk Center, Texas Tech University Health Center. https://www.infantrisk.com/content/migraine-headaches

Migraine and Tension Headache Guideline. Kaiser Permanente.

https://wa.kaiserpermanente.org/static/pdf/public/guidelines/headache.pdf

Lifestyle Strategies That Might Help Your Migraine. WebMD. https://www.webmd.com/migraines-headaches/common-headaches-17/migraine/slideshow-nondrug-migraine-relief

Nicole Galan. What are some tips for instant migraine relief? MedicalNewsToday. Aug. 20, 2018. https://www.medicalnewstoday.com/articles/322814.php#3

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Autism’s Change to Autism Spectrum Disorder

Autism’s Change to Autism Spectrum Disorder

Author: Mark Parkinson BsPharm: President AFC-CE

Credit Hours 3- Approximate time required: 180 min.

Educational Goal

Show how the grouping all the different kinds of Autism into a single diagnosis effects Autism therapy.

Educational Objectives

Explain how the various autism disorders are now combine into a single diagnostic category as a spectrum of disorders and its impact on therapy and diagnosis.

Define Autism Spectrum Disorder, and inform about its biology, prevalence, risk factors.

List Autism Spectrum Disorders signs and symptoms and therapy option

Show how ASD effects all foster care settings.

Provide caregiver perspectives on ADS care.

Procedure:

Disclaimer

Autism’s Change to Autism Spectrum Disorder

This topic was requested by a developmentally disabled caregiver. Yes, I do respond to requests. Just shoot me an email.

Over the past decade, there has been a fundamental shift in how autism is perceived and cared for. Historically, the lack of therapeutic and care options shunted autistic patients into long-term care institutions. Institutionalization hid the problem behind whitewashed walls and created a stigma in the mind of the general public. Autism became a topic of pity that was best avoided in general discussions. In the medical community, all of that has changed. Institutionalization has been largely abandoned in favor of integration. Emphasis has changed from assigning a diagnostic label to developmental therapeutic options. Before we talk any further about this change, we first have to get everyone on the same page.

Autism’s Definitions

No, that is not a typo — I do mean definitions, plural. Let me explain. The general definition of autism is a developmental disorder where the individual has difficulties with social interactions and communicating with others. It often creates restrictive or repetitive behaviors. But there is a problem with that definition. It doesn’t describe the disorder; it’s just a broad list of symptoms. There is nothing beyond calling it a “developmental disorder.” This left the general public, doctors, and even researchers to fill in the blanks themselves, creating, in effect, multiple definitions of what autism is.

Previously, groups of individuals with similar symptoms and severities were placed in the same general subgroup. You probably recognize some of their names: Asperger syndrome, Rett syndrome, childhood disintegrative disorder (CDD) and pervasive developmental disorders not otherwise specified (PDD-NOS), also called atypical autism.

The problem was that the subgroups were very fluid. It seemed that each doctor had their own criteria for who belonged in which group. The confusion was understandable. There is still no clear answer to what causes autism. Even in recognizing the symptoms there is a large variation in severity and presentation. Diagnosis was very difficult for doctors because it was impossible to set clear diagnostic guidelines that everyone could agree upon. For example, Asperger’s syndrome is generally recognized as a milder form of autism. Where does Asperger’s end and autism begin? Which symptom do you measure for severity that indicates it is no longer Asperger’s, but full-blown autism? If you have no answers, many doctors trying to diagnose their patients didn’t either.

In order for that system of diagnosis to work, a lot of effort had to go into finding out what caused the symptoms and trying to find ways to measure them. Many people thought that required too much emphasis on describing symptoms, at the expense of providing meaningful therapy. Labeling different groups of patients also created social stigmas that hampered therapy. Clinicians and specialists started to take a different approach and more effort was concentrated on therapeutic options, regardless of symptoms. Some experts even speculated that autism might be just a natural variation of brain development and not a disorder at all.

A Change in Emphasis

In May of 2013, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DMS-5) removed the individual listings of the various autism disorders and placed them in the general category of autism spectrum disorder (ASD). This created a whole new diagnostic model. It recognizes that the level of disability and the combination of symptoms varies tremendously from person to person. It enabled doctors to diagnose patients who may look very different when it comes to their behaviors and abilities but still fit into the same general autism criteria. In my opinion, statements made on the website helpguide.org capture the spirit of this new diagnostic model:

“Autism is not a single disorder, but a spectrum of closely related disorders with a shared core of symptoms. Every individual on the autism spectrum has problems to some degree with social interaction, empathy, communication, and flexible behavior. But the level of disability and the combination of symptoms varies tremendously from person to person. In fact, two kids with the same diagnosis may look very different when it comes to their behaviors and abilities.”

“No diagnostic label can tell you exactly what challenges your child will have. Finding treatment that addresses your child’s needs, rather than focusing on what to call the problem, is the most helpful thing you can do. You don’t need a diagnosis to start getting help for your child’s symptoms.”

What We Know of Autism so Far

I hope that everyone reading this course is on the same page now, or least getting there soon. That is also, in essence, the best way to describe what change has happened to autism care in America today. By describing autism as a spectrum of conditions, the researchers, doctors, therapists, educators, politicians, family members, and caregivers are all on the same page. We are all focused on helping the autistic patient have the best possible outcomes, regardless of what caused the condition to develop in the first place. From now on, when I talk about autism, I mean autism spectrum disorder. Okay, let’s continue. If autism is not a single disease but a spectrum of different conditions, what do we know so far?

Biology

The cause of autism is not well understood. There appear to be many factors that contribute to its development. There may even be several different conditions originating from different biological pathologies that happen to result in the same core autistic symptoms. What is clear is that it is related to changes in the normal maturation process of the brain and nervous system. It may be related to mutated genes (a weakness in the gene expression that causes errors in building brain tissue), a change in how the nerves of the nervous system connect to each other along synapses, physical damage from toxins or inflammation to the pregnant mother and child, or some combination of all of the above.

There is some evidence that the bacteria in the gut may play a role in autism. The bacteria in our gut is called our microbiome. Research shows clear evidence that our microbiome affects the enteric nervous system, which is connected to the gut-brain axis. Studies are being conducted in hopes of determining if the right balance of microbes in the gut will have an effect on the development or therapy of ASD.

Prevalence

The number individuals who have been identified with ASD seems to be a bit hazy. That is to be expected when you change diagnostic procedures. Its prevalence seems to be increasing, but that just might be related to the new diagnostic methodology. Wikipedia reported estimates of a prevalence of one or two per 1,000 for autism and close to six per 1,000 for ASD as of 2007. Later in the same article it was cited that a 2016 survey in the United States reported a rate of 25 per 1,000 children for ASD. In 2014 the Centers for Disease Control and Prevention (CDC) sampled eight-year-old children from 11 U.S. communities and estimated that one in 59 children were identified with ASD.

Risk Factors

Genetics: There is a strong genetic influence on the development of autism spectrum disorder (ASD). ASD traits are inherited in the vast majority of cases. Parents who have a child with ASD have a 2 to 18 percent chance of having a second child who is also affected.
Race: ASD appears in all races, ethnic, and socio-economic groups.
Gender: There are four times the number of boys affected by ASD than there are girls. The reason for this is unclear.
Age of parents: The children of older parents are at greater risk for ASD. This is because the biological systems of the parents are wearing out, causing errors and mutations.
Abnormal genetic disorders: People with conditions such as Down syndrome, fragile X syndrome, and Rett syndrome are more likely than others to have ASD.
Development at time of birth: Very low birth weight is a known factor in autism.
Environmental factors: There seems to be an increase trigger of ASD if the pregnant mother has an infection with inflammation (German measles), has taken medications that cause birth defects (antiseizure meds), or has been exposed to certain air pollutants or toxins such as alcohol.
Vaccination: Vaccinations do not cause autism. There was an attempt to sue a drug manufacturer, claiming a preservative in a vaccine had caused autism in a patient. It was later proved that the case was a fraudulent attempt at getting rich. After 20 years of extensive research by several organizations, it is clear that vaccinations have no connection to ASD.

Signs and Symptoms

As we have discussed already, autism is a highly variable brain development issue. Each patient will have their own unique set of symptoms and severities. The impact on the patient’s life is described as low functioning to high functioning. Symptoms can be diagnosed as early as two years old or go undiagnosed until later in life.

WebMD.com states that “half of parents of children with ASD noticed issues by the time their child reached 12 months, and between 80% and 90% noticed problems by two years.”

According to the DSM-5, (the guide created by the American Psychiatric Association used to diagnose mental disorders), symptoms are broadly described as:

difficulty with communication and interaction with other people,
restricted interests and repetitive behaviors, and
symptoms that hurt the person’s ability to function properly in school, work, and other areas of life.

What does all that actually look like in real life? What are restricted interests? What are some examples of individual behaviors that impair the ability to function in life activities? There are many examples, which we can break up into two categories.

Social Communication Problems and the Lack of Social Understanding

Fails to respond to his or her name or appears not to hear you at times.
Resistance to being touched. For example, resists cuddling and holding and seems to prefer playing alone.
Doesn't speak or has delayed speech development. May lose previous ability to say words or sentences.
Can't start a conversation or keep one going; only starts one to make requests or label items.
Speaks with an abnormal tone or rhythm and may use a singsong voice or robot-like speech.
Repeats words or phrases verbatim but doesn't understand how to use them.
Doesn't appear to understand simple questions or directions.
Doesn't express emotions or feelings and appears unaware of others’ feelings.
Inappropriately approaches a social interaction by being passive, aggressive or disruptive.
Unusual or inappropriate body language, gestures, and facial expressions. For example, avoiding eye contact or using facial expressions that do not match with what he or she is saying.
Problems with pronouns (saying “you” instead of “I,” for example).
Lack of interest in other people or in sharing interests or achievements. For example, doesn't point at or bring objects to share interest, like pointing at a bird.
Difficulty understanding other people’s feelings and reactions and recognizing social cues like body postures and tone of voice.
Difficulty or failure to make friends with children the same age.

Restrictive and Repetitive Behavioral Problems

Performs repetitive movements, such as rocking, spinning, or hand flapping.
Not using or rarely using common gestures (pointing or waving), and not responding to them.
Performs activities that could cause self-harm, such as biting or head-banging.
Has a strong need for sameness, order, and routines. For example, lines up toys, or follows a rigid schedule. Gets upset by change in their routine or environment.
Has problems with coordination or has odd movement patterns, such as clumsiness or walking on toes, and has stiff or exaggerated body language.
Is fascinated by details of an object, such as the spinning wheels of a toy car, but doesn't understand the overall purpose or function of the object.
Doesn't engage in imitative or make-believe play.
Fixates on an object or activity with abnormal intensity or focus. For example, has an obsessive attachment to unusual objects (rubber bands, keys, light switches).
Has specific food preferences, such as eating only a few foods, or refusing foods with a certain texture.
Repeating words or phrases over and over without communicative intent.
Taking what is said too literally, missing humor, irony, and sarcasm.
Delay in learning how to speak (after the age of two) or doesn’t talk at all.
Is unusually sensitive to light, sound, or touch, yet may be indifferent to pain or temperature.

A Change in Method

I hope you have realized by now that the switch from autism to ASD has turned everything on its ear, medically speaking. Everything is handled differently. You’re not looking for disease markers but how regular abilities are developing. Therapy can and should happen before a diagnosis is made. Therapy concentrates on behavioral adaptation and skill development, not “curing” the disease. A special education teacher may have more impact than a doctor does. So, where do you start? It starts by suspecting something is not quite right and climbing up the ladder. It’s going to take time, patience, and a different mindset.

Diagnosis

Diagnosis can be a difficult and trying experience. There are no tests to take or biological markers to look for. Diagnosis is based on the presence of multiple symptoms that disrupt a person’s ability to communicate, form relationships, explore, play, and learn. This takes time and experience on what to look for. It may take years of observation by a team of specialists before you can get an official declaration of identification. After all, we’re talk about infants and 2-year-olds who do not communicate normally. It’s going to take extra time observing behaviors and brain development patterns over multiple doctor visits. Diagnosis typically is a two-step process.

Step 1: Well Child Developmental Screenings

What doctors are looking for are delays in regular development. Each child is different but the general guidelines are:

doesn't respond with a smile or happy expression by six months.
doesn't mimic sounds or facial expressions by nine months.
doesn't babble or coo by 12 months.
doesn't gesture — such as point or wave — by 14 months.
doesn't say single words by 16 months.
doesn't play "make-believe" or pretend by 18 months.
doesn't say two-word phrases by 24 months.
loses language skills or social skills at any age.

Step 2: Targeted Evaluation

This step is where an “observation team” goes to work. The team might include a child psychiatrist or psychologist, pediatric neurologist, developmental pediatrician, and a speech pathologist. If you are thinking this is starting to look expensive, it is. It is not unusual for medical bills to start topping $60,000 a year.

Associated Medical Conditions

Autism doesn’t occur in a bubble. Other conditions called comorbidities can occur at any time in the child’s life, even up into adulthood. Often, they are linked to the same developmental issues. The strain of trying to live with a disability can also lead the patient into other mental health issues and the development of maladaptive behaviors. Up to three-quarters of ASD patients have comorbidities that reduce their quality of life and hamper therapeutic efforts.

Comorbidities and maladaptive behaviors often seen in ASD are:

Anxiety and phobias
Attention deficit hyperactivity disorder (ADHD)
Bipolar disorder
Clinical depression
Down syndrome
Fragile X syndrome
Gastrointestinal symptoms (IBS, constipation, sensitive stomach)
Intellectual disability and developmental delays
Motor difficulties (lack of muscle control leading to being clumsy)
Obsessive-compulsive disorder (OCD)
Self-injury
Seizures and epilepsy
Sleep problems (getting to sleep, staying asleep, nightmares)
Tantrums
Tourette’s syndrome
Tuberous sclerosis

Prognosis

There is no cure for ASD but there is the ability to adapt to the limitations of the disability. Skills can be learned, and therapy can be applied. There are even reports that some children improve enough to lose the ASD diagnosis. Language skills are usually developed by age 5, and other symptoms become less severe as they age into adulthood. The presence of therapy, social support, and gaining a marketable skill are key factors in a positive outcome.

A Change in Therapy

In standard medical practice you usually wait for a diagnosis and then apply therapy to resolve the medical issue. Historically, that didn’t work very well with autism. Even today, there is still no medical intervention that can alter the course of autism. Instead, experts suggest that therapy begin even before a diagnosis is pronounced. They point out that waiting years for a doctor can waste valuable time in the critical years of childhood development. But if there is no medical intervention that can change the course of the disorder, what does autism therapy do?

Goals of Therapy

The shift in focus from identifying the symptoms to therapeutic intervention changes the goals of therapy. The main goals in treating children with autism is to enable functional independence by developing life skills, lessening the associated deficits, and reducing patient and family stress. Even if independence cannot be fully achieved, an increase in the quality of life is still the goal by teaching patients how to accomplish activities of daily living.

What does that look like?

Being a spectrum of disorders, there is no one therapy that works for everyone. A care plan that is tailored to the individual needs of the patient will have to be developed. It will be a long-term plan that changes as the child’s needs change. The guiding principles of the care plan are:

Comorbidity Control and Symptom Impact Reduction

Once comorbidities and troublesome symptoms have been identified, medical intervention can be selected and applied. Medication and therapy can help manage the problems so that the patient can get on with their life.

Early Intervention Services

Early intervention can greatly improve the child’s ability to learn and develop the basic functional and social skills that are needed by every child.

IDEA Act

The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for special services. These include therapy to help the child talk, walk, and interact with others. Even if the child has not been diagnosed yet, early intervention treatment services may still be available.

Treatment Selection

There are a wide variety of treatment modalities available. Due to the individualistic nature of the disorder, it is impossible to say which is the most effective therapy. Monitoring for effect will be an essential component of therapy. To help you get an overall understanding of the various therapies available, I have combined the choices into the following categories:

Behavior and Communication Approaches

These are programs that attempt to modify behaviors through communication therapies and techniques. Behavioral and communications approaches have been around since the 1960s and have been extensively studied. Several different methodologies have been developed.

I found a brief description of several different approaches on the Centers for Disease Control and Prevention website: https://www.cdc.gov/ncbddd/autism/treatment.html

Applied Behavior Analysis (ABA)

A notable treatment approach for people with ASD is called applied behavior analysis (ABA). ABA has become widely accepted among healthcare professionals and is used in many schools and treatment clinics. ABA encourages positive behaviors and discourages negative behaviors in order to improve a variety of skills. The child’s progress is tracked and measured.

There are different types of ABA. The following are some examples:

Discrete Trial Training (DTT)

DTT is a style of teaching that uses a series of trials to teach each step of a desired behavior or response. Lessons are broken down into their simplest parts and positive reinforcement is used to reward correct answers and behaviors. Incorrect answers are ignored.

Early Intensive Behavioral Intervention (EIBI)

This is a type of ABA for very young children with ASD, usually younger than 5, and often younger than 3.

Pivotal Response Training (PRT)

PRT aims to increase a child’s motivation to learn, monitor their own behavior, and initiate communication with others. Positive changes in these behaviors should have widespread effects on other behaviors.

Verbal Behavior Intervention (VBI)

VBI is a type of ABA that focuses on teaching verbal skills.

Other therapies that can be part of a complete treatment program for a child with an ASD include:

Developmental, Individual Differences, Relationship-Based Approach

(DIR; also called “Floortime”)

Floortime focuses on emotional and relational development (feelings, relationships with caregivers). It also focuses on how the child deals with sights, sounds, and smells.

Treatment and Education of Autistic and Related Communication-handicapped Children (TEACCH)

TEACCH uses visual cues to teach skills. For example, picture cards can help teach a child how to get dressed by breaking information down into small steps.

Occupational Therapy

Occupational therapy teaches skills that help the person live as independently as possible. Skills might include dressing, eating, bathing, and relating to people.

Sensory Integration Therapy

Sensory integration therapy helps the person deal with sensory information, like sights, sounds, and smells. Sensory integration therapy could help a child who is bothered by certain sounds or does not like to be touched.

Speech Therapy

Speech therapy helps to improve the person’s communication skills. Some people are able to learn verbal communication skills. For others, using gestures or picture boards is more realistic.

The Picture Exchange Communication System (PECS)

PECS uses picture symbols to teach communication skills. The person is taught to use picture symbols to ask and answer questions and have a conversation.

If you would like to know more about these therapeutic approaches, visit the Autism Speaks or Autism Society websites, where you can read more about them.

Dietary Approaches

Dietary approaches assert that some autistic behaviors are a result of food allergies or sensitivities. By reducing or eliminating the offending food, negative behaviors are more easily controlled. For example, if an autistic child has celiac disease (sensitivity to wheat gluten) and is given some bread, then the child will misbehave because his or her stomach hurts.

Complementary and Alternative Medicine

Up to 30 percent of parents look outside traditional medical practice for therapeutic options. In desperation, they turn to practitioners of homeopathy, naturopaths, and Eastern medical practices. There is little scientific data on the viability of these approaches. They may or may not work, and they may or may not be safe for the child. As primary caregivers you may have the opportunity to talk to the family about such choices. Tell them that finding a way to measure positive and negative outcomes are critical in these approaches. Point out that when making this choice they are in essence doing a medical experiment on their child. They might believe the myth that because a medical supplement claims to be “natural,” it is safe. Reminded them that deadly nightshade is also “natural,” but is it safe? Here are some examples of good and not-so-good complementary and alternative therapies.

May have some benefit and are relatively safe:

Creative therapies – Art or music-focused therapy. The goal is to reduce the child's sensitivity to touch or sound by creating enjoyable experiences with these activities. These therapies are usually added on to other treatments.
Sensory-based therapies – There is an unproven theory that people with autism spectrum disorder have a sensory processing disorder that causes problems in tolerating or processing sensory information. Therapists use brushes, squeeze toys, trampolines, and other materials to stimulate and desensitize these senses. Research has not yet shown these therapies to be effective, but it's possible they may offer some benefit when used along with other therapies.
Massage — Massages are relaxing and a positive experience. Everyone likes a massage. Unfortunately, there isn't enough evidence to determine if it improves symptoms of autism spectrum disorder.
Pet or horse therapy — Pets can provide companionship and recreation to any child. Research is just starting to look into whether the interaction with animals can specifically affect the symptoms of autism.

May not be harmful but studies are not conclusive if they are of benefit yet:

Vitamin supplements and probiotics — Vitamins and probiotics (good bacteria) are not harmful when used in normal amounts. The problem is that no one knows how much and which ones may be of benefit in autism therapy. It also may benefit only certain types of patients, for example, probiotic use for patients that have irritable bowel syndrome (IBS). More research is needed.
Acupuncture — Acupuncture has been used for centuries but its effectiveness in autism is not supported by any significant research.

May be potentially dangerous therapies:

Chelation therapy — This treatment attempts to remove heavy metals such as mercury from the body. There's no known link between autism spectrum disorder and heavy metals. Chelation therapy for autism spectrum disorder is not supported by any research evidence and can be very dangerous. There are reports that children treated with chelation therapy have died.
Hyperbaric oxygen treatments — Hyperbaric oxygen is a treatment that involves breathing oxygen inside a pressurized chamber. This treatment is expensive and there is little evidence that it is effective. The Food and Drug Administration (FDA) has not approved its use in autism.
Intravenous immunoglobulin (IVIG) infusions — The FDA has not approved immunoglobulin products for this use. This is a flat-out dangerous experiment with no research to support its use.

Autism’s Change and Caregiving

We’ve talked a lot about how the change from autism to autism spectrum disorder has affected medical practice, from managing a disease to therapeutic developmental support. Let’s now talk about what that means to in-home caregiving. As a disease, caregiving was just doing what the doctor ordered. As a therapeutic developmental support, in-home caregiving takes on a more important role in therapy. How you set up your home and how the autistic resident lives there becomes therapy. Let’s talk about ways to make that happen more easily and be more effective. First, let’s make this real for all caregivers regardless of what kind of home they work in.

Missed Diagnosis and Misdiagnosis

I know that there are some adult foster care providers who are in geriatric or mental health homes reading this course and thinking this is just for developmentally disabled (DD) homes. I’m not so sure of that. Not too long ago, some kids who would be diagnosed with autism spectrum disorder today might have been labeled as “difficult” or “learning disabled,” and may not have gotten the help they needed. They struggled through life not quite able to make it on their own, and they eventually end up in your home.

So I ask all caregivers — DD, mental health, and adult family care (AFC) — do you know what autism spectrum disorder looks like? Should your troublesome resident belong on the autism spectrum? If not now, could it happen with a future resident? Of course it’s possible. Therefore, here is what I think you should do.

Look for the signs. Foster care providers are great monitors of their residents. You are where the rubber meets the road, medically speaking. You’ll catch things way before anyone else does. You don’t have to diagnosis, you just have to suspect.

When in doubt, call it out. Document your observations and get them to the doctor and ask the question — “Is this autism?”

If it is autism, adjust your caregiving. Autism is a disorder of social interaction and communication. They can’t react as other residents do. You will have to help them compensate for their disability. When you do, things should go that much more smoothly in your home.

Now let’s look at the other side of the coin. If you have a diagnosis of autism and therapy is not working, is it really autism that you’re dealing with? Since there are no definitive tests, there is always an element of guessing going on. What if they guessed wrong? There are several conditions that look like some aspects of autism spectrum disorder.

They are:

Hearing loss
Psychological disorders
Avoidant personality disorder
Obsessive-compulsive disorder (OCD)
Reactive attachment disorder
Social (pragmatic) communication disorder
Schizophrenia, which rarely happens in children
Lead poisoning
Genetic disorders
Down syndrome
Tuberous sclerosis

Here again the caregiver steps are “look for the signs” and “when in doubt, call it out.”

Medication Management

Now that we know the possibility is real, let’s talk about caregiver tools and techniques in regard to ASD. Since I’m a pharmacist, I’ll start off with the drugs that may be used in treatment and what you might have to do with them.

Medication therapy is seen in up to 62 percent of cases. Medications are used to help control behaviors that make it difficult for the patient to integrate into home, school, and work environments. In my experience, that percentage starts out higher in care homes. New residents to your home typically bring with them a mixed bag of pills. I have found that unskilled family caregivers and other well-meaning support personnel sometimes use medications as a chemical babysitter or restraint. The result is the target behavior is controlled but the side effects are not managed well, which usually results in more medications to control the side effects. When the resident gets established in a stable and professional foster care home, the need for medications usually diminishes. Care providers should carefully review the med list periodically to see if the drug is still needed. And as always, be familiar with what side effects can occur. They might be more of an issue than the original problem.

Here’s a table of some common meds used in ASD. Though some of these medications will be familiar to caregivers, their intended effect may be different than what you are used to. The side effects that may appear may also be different than what you have typically seen in your other residents.

Drug Type Treats Side Effects

Stimulants

methylphenidate

(Ritalin, Metadate,

Concerta, Methylin,

Focalin, Daytrana)

mixed amphetamine

salts (Adderall)

dextroamphetamine

(Dexedrine)

lisdexamfetamine

(Vyvanse)

Hyperactivity

Short attention span

Impulsive behaviors

Common

Problems falling asleep

Low appetite

Irritability

Emotional

outbursts

Less Common

Anxiety

Depression

Repeating behaviors

and thoughts

Headaches

Diarrhea

Social withdrawal

Changes in heart rate

Tics

Alpha Agonist

guanfacine

(Tenex, Intuniv)

clonidine

(Catapres, Kapvay)

Hyperactivity

Short attention span

Impulsive behaviors

Sleep problems

Tics

Sleepiness

Irritability

Aggression

Low appetite

Low blood pressure

Constipation

Antidepressant

fluoxetine (Prozac)

fluvoxamine (Luvox)

sertraline (Zoloft)

paroxetine (Paxil)

citalopram (Celexa)

escitalopram (Lexapro)

Depression

Anxiety

Repeating thoughts

Repeating behaviors

GI problems (nausea, vomiting, constipation, low appetite)

Headaches

Problems falling asleep

Sleepiness

Agitation

Weight gain

Seizure

Thoughts of harming self

Suicide

Serotonin syndrome

Antipsychotics

risperdone (Risperdal)

olanzapine (Zyprexa)

quetiapine (Seroquel)

aripiprazole (Abilify)

ziprasidone (Geodon)

Irritability

Aggression

Self-injury

Tantrums

Sleep problems

High activity level

Repeating behaviors

Tics

Sleepiness

Drooling

Increased appetite and weight gain

High blood sugar, diabetes

High cholesterol

Tardive dyskinesia

(abnormal movements)

Quetiapine –

eye side effects

Ziprasidone –

heart side effects

Anti-Seizures/Mood Stabilizers

carbamazepine

(Tegretol, Carbatrol)

valproic acid

(Depakote, Depakene)

lamotrigine (Lamictal)

oxcarbazepine (Trileptal)

topiramate (Topamax)

clonazepam (Klonopin)

alprazolam (Xanax)

Seizures

Mood problems

Aggression

Self-injury

Anxiety

Sleepiness

Nausea

Vomiting

Confusion

Clonazepam and Alprazolam –impaired memory, judgement, and coordination

Dizziness

Rashes

Memory problems

Hepatitis

Liver failure

Pancreatitis

Bone marrow suppression

Tremor

Depression

Clonazepam and Alprazolam – Paranoia

Valproic acid –

fever, hair loss

Behavioral Management

Because autism is a spectrum of disorders, each person will have their own unique set of strengths and weaknesses that influences how they have developed. By the time they arrive at your care home they will inevitably have acquired some maladaptive behaviors that need to be addressed. As you start working with your autistic resident, care providers must remember that there will be unique communication problems and a lack of social understanding. That doesn’t mean that they will be problem residents, it just means that caregivers will have to adapt their techniques to get the desired results.

Accept your resident, quirks and all. Don’t fall into the trap of comparing the autistic patient with “normal” people (if there is such a thing). It helps to remember that there is a developmental handicap and the person can’t act “normally.” That doesn’t mean they can’t fit in given the right support.
Don’t give up. Your resident will adapt but at their own pace, dictated by their weaknesses and strengths. Work around what is missing and learn to enjoy the strengths.
Become an expert on your resident. Figure out what triggers a behavior. Find out what is stressful and challenging. Discover what is calming and enjoyable. Record your discoveries in your files so you can educate others more easily.
Become the resident’s advocate with the world. Educate others about the limitations and quirks that you have discovered. Help the resident communicate with those he or she will come in contact with.
Learn about autism. You’re not in this alone. There is a wealth of information on ASD that others have discovered that you can take advantage of. I will provide starting points for your research later on.

Helping Your Child with Autism Thrive: Tips from the Help Guide at Autism Speaks

Tip 1: Provide structure and safety.

Be consistent. Children with ASD have a hard time applying what they’ve learned in one setting (such as the therapist’s office or school) to others, including the home. For example, your child may use sign language at school to communicate, but never think to do so at home. Creating consistency in your child’s environment is the best way to reinforce learning. Find out what your child’s therapists are doing and continue their techniques at home. Explore the possibility of having therapy take place in more than one place in order to encourage your child to transfer what he or she has learned from one environment to another. It’s also important to be consistent in the way you interact with your child and deal with challenging behaviors.
Stick to a schedule. Children with ASD tend to do best when they have a highly structured schedule or routine. Again, this goes back to the consistency they both need and crave. Set up a schedule for your child, with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your child for it in advance.
Reward good behavior. Positive reinforcement can go a long way with children with ASD, so make an effort to “catch them doing something good.” Praise them when they act appropriately or learn a new skill, being very specific about what behavior they’re being praised for. Also look for other ways to reward them for good behavior, such as giving them a sticker or letting them play with a favorite toy.
Create a home safety zone. Carve out a private space in your home where your child can relax, feel secure, and be safe. This will involve organizing and setting boundaries in ways your child can understand. Visual cues can be helpful (e.g., colored tape marking areas that are off-limits, labeling items in the house with pictures). You may also need to safety-proof the house, particularly if your child is prone to tantrums or other self-injurious behaviors.

Tip 2: Find nonverbal ways to connect.

Connecting with a child with ASD can be challenging, but you don’t need to talk — or even touch — in order to communicate and bond. You communicate by the way you look at your child, by the tone of your voice, your body language, and possibly the way you touch your child. Your child is also communicating with you, even if he or she never speaks. You just need to learn the language.

Look for nonverbal cues. If you are observant and aware, you can learn to pick up on the nonverbal cues that children with ASD use to communicate. Pay attention to the kinds of sounds they make, their facial expressions, and the gestures they use when they’re tired, hungry, or want something.
Figure out the motivation behind the tantrum. It’s only natural to feel upset when you are misunderstood or ignored, and it’s no different for children with ASD. When children with ASD act out, it’s often because you’re not picking up on their nonverbal cues. Throwing a tantrum is their way of communicating their frustration and getting your attention.
Make time for fun. A child coping with ASD is still a child. For both children with ASD and their parents, there needs to be more to life than therapy. Schedule playtime when your child is most alert and awake. Figure out ways to have fun together by thinking about the things that make your child smile, laugh, and come out of her/his shell. Your child is likely to enjoy these activities most if they don’t seem therapeutic or educational. There are tremendous benefits that result from your enjoyment of your child’s company and from your child’s enjoyment of spending unpressured time with you. Play is an essential part of learning for all children and shouldn’t feel like work.
Pay attention to your child’s sensory sensitivities. Many children with ASD are hypersensitive to light, sound, touch, taste, and smell. Some children with autism are “under-sensitive” to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your kid’s “bad” or disruptive behaviors and what elicits a positive response. What does your child find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, you’ll be better at troubleshooting problems, preventing situations that cause difficulties, and creating successful experiences.

Source https://www.helpguide.org/articles/autism-learning-disabilities/helping-your-child-with-autism-thrive.htm

Developmental Management

Autistic residents may be developmentally handicapped, but they can learn to adapt and grow if given the right support. The doctor and the autism specialist team may develop a long-term care plan. You may hear different or even conflicting recommendations from parents, teachers, and doctors. Be the resident’s advocate and straighten things out. Keep in mind that there is no single treatment that works for everyone. Be the doctor’s eyes and ears and report back how therapy is going.

Help, but not too much. Development will be slowed if the resident is coddled too much. Help develop the life skills that will serve the resident throughout their life.
Learn more about autism home-based and school-based treatments and interventions for autism.
Play and interact with the children in ways that promote social interaction skills, manage problem behaviors, and teach daily living skills and communication.
Take advantage of programs and specialists that are all around you.

Autism Resource Research Starting Points

Autism Navigator: https://autismnavigator.com/

Autism Speaks: https://www.autismspeaks.org

https://www.autismspeaks.org/tool-kit

Autism Society: https://www.autism-society.org/

https://www.autism-society.org/about-the-autism-society/contact-us/

To speak to an I&R Specialist directly, call 800-3-AUTISM (800-328-8476).

Autism Today: https://autismtoday.com/

CDC: https://www.cdc.gov/ncbddd/autism/index.html

Conclusion

The perception of autism has changed from separate individual disorders to viewing them as a whole spectrum of the same disorder. This has shifted the emphasis from diagnosis to therapy selection and patient development. Though diagnosis could take a team of experts and years to complete, the needs of the patient can start to be fulfilled right away.

With this change comes the possibility of missed diagnosis in current residents of any type of care home. With this realization, difficult patients may belong on the autism spectrum. Caregivers must look for the signs and bring their observations to the doctor’s attention. Once a patient is diagnosed, elements of regular home living can become therapy. Because of communication and social interaction disabilities, the caregiver will need to adjust their caregiving to meet the needs of the autistic resident. This CE is just the beginning. The need for further education is self-evident.

Good luck in your ASD caregiving,

Mark Parkinson, BS Pharm

References:

Autism Spectrum Disorder. National Institute of Mental Health, NIH. 2019. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml

Autism spectrum disorder. MayoClinic, 2019. Jan. 06, 2018. https://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/symptoms-causes/syc-20352928

Autism Spectrum Disorders. HelpGuide 2019. https://www.helpguide.org/articles/autism-learning-disabilities/autism-spectrum-disorders.htm

Helping Your Child with Autism Thrive. HelpGuide 2019. https://www.helpguide.org/articles/autism-learning-disabilities/helping-your-child-with-autism-thrive.htm

Autism Spectrum Disorder (ASD). Center for Disease Control and Prevention. Aug. 27 2019. https://www.cdc.gov/ncbddd/autism/facts.html

Practical Oral care for People with Autism. NIH Publication No. 09–5190 July 2009. https://www.nidcr.nih.gov/sites/default/files/2017-09/practical-oral-care-autism.pdf

Narek Israelyana, Kara Gross Margolisb, Serotonin as a Link Between the Gut-Brain-Microbiome Axis in Autism Spectrum Disorders. Pharmacol Res. 2018 Jun; 132: 1–6. NBCI. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6368356/

Autism. National Center for Complementary and Integrated Health NIH. Sep.24, 2017 . https://nccih.nih.gov/health/autism

What Drugs Are Used for Treating Autism? Applied Behavior Analysis Edu.Org 2019. https://www.appliedbehavioranalysisedu.org/what-drugs-are-used-for-treating autism/#targetText=Anticonvulsants%20are%20among%20the%20few,third%20of%20autism%20patients%20do.

Tool Kit. AutismSpeaks. 2019. https://www.autismspeaks.org/tool-kit

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Probiotic, Prebiotic, and Synbiotic Supplements … Huh?

Probiotic, Prebiotic, and Synbiotic Supplements … Huh?

Author: Mark Parkinson BsPharm: President AFC-CE

Credit Hours 1- Approximate time required: 60 min.

Educational Goal

Teach caregivers about Probiotic, Prebiotic and Synbiotic Supplements and there use in caregiving

Educational Objectives

Define the terms probiotics, prebiotics and synbiotics

Tell how they are regulated by the FDA

Show the difference between beneficial bacteria and harmful bacteria

Delineate the beneficial effects of the gut microbiome

List ways to incorporate probiotics into in home caregiving

Procedure:

Disclaimer

Probiotic, Prebiotic, and Synbiotic Supplements … Huh?

According to the National Institute of Health (NIH):

‘The 2012 National Health Interview Survey (NHIS) showed that about 4 million (1.6 percent) U.S. adults had used probiotics or prebiotics in the past 30 days. Among adults, probiotics or prebiotics were the third most commonly used dietary supplement other than vitamins and minerals. The use of probiotics by adults quadrupled between 2007 and 2012. The 2012 NHIS also showed that 300,000 children age 4 to 17 (0.5 percent) had used probiotics or prebiotics in the 30 days before the survey.”

Without question, the word “probiotics” is getting more and more popular in today’s culture. You’re seeing the term everywhere, seemingly describing totally different products. To add to the confusion, you will also hear the terms “prebiotic” and “synbiotic” thrown around. What is a probiotic? What’s it good for? Can foster care providers use them for their residents? Do they need to be charted on a Medication Administration Record (MAR) or do they belong on the menu? Are they a food or are they therapy? We’re going clarify what these words actually mean and how they fit into caregiving.

Definitions

Probiotics are live microorganisms that, when administered in adequate amounts, confer a health benefit to the host.

Prebiotics are nondigestible food components that selectively stimulate the growth or activity of desirable microorganisms.

Synbiotics are products that combine probiotics and prebiotics.

Being Healthy — Good Bugs vs. Bad Bugs

All over your skin and inside your guts are trillions of live microbes, mainly bacteria. They outnumber your own cells by a ratio of 10 to one. Collectively, they used to be called your microflora; now, we refer to them as your microbiome.

We are used to thinking of bacteria as villains, a source of infections and disease. We have labeled bacteria as bad bugs that cause poor health. However, in our gut reside several beneficial species of bacteria that play vital roles in digestion, immunity, and even mental health. These are good bugs that are our symbiotic partners that help us maintain good health.

What do the good bugs do that is so beneficial? To understand how they are beneficial, you first have to know what they do. Think of bacteria as chemical producers with voracious appetites. We can’t digest all the food we eat. The leftover bits and fibers flow into the lower intestinal tract where they come into contact with these little chemical factories. The bacteria produce enzymes that break down the undigested material in a process called fermentation. The bacteria then consume part of the broken-down material and produce chemical byproducts of their own. As a result of all this microbial activity we gain several benefits:

Bacteria produce nutrients that are essential to good health. They are:

Vitamin K
Vitamin B12
Other B vitamins
Short-chain amino acids.

The bacteria that make up our microbiome protect themselves from harmful events. In protecting themselves they also protect us by:

breaking down toxins that make it to the colon
killing cancerous cells
controlling the bad bugs that lead to infections.

The chemicals produced by the microbiome can be sensed by the enteric nervous system, a large network of nerves that connects the brain to the gut. In essence, the microbes chemically “talk” to the brain.

This “conversation” is implicated as an important factor in many metabolic processes and disorders including:

mental health issues
migraine headache resolution
irritable bowel syndrome (IBS) and other gastrointestinal (GI) disorders.

Proper bowel function is also dependent on the chemicals produced by the microbiome. The right mix of chemicals can help the stool move through the colon in a normal manner.

The symbiotic relationship between our bodies and our microbiome is very complex, with trillions of interactions per hour. We are just beginning to understand the significance of all these interactions.

What We Know So Far

The vitamins produced in our gut are important in metabolic processes throughout our bodies. The only source of vitamin B12 is from bacterial fermentation. The short-chain amino acids are utilized as a food source for our cells. They also play an important role in muscle function and the prevention of chronic diseases, including certain cancers and bowel disorders. The nervous system in our gut can sense changes in the chemical compensation of the contents of our gastrointestinal (GI) tract, which reports the information directly to the brain. Recent studies have shown that this interaction plays a significant role in how we feel. It can lead to contentment or contribute to depression. By competing for food and living space, the good bugs inhibit the growth of the bad bugs all throughout the body.

There are over a thousand different kinds of bacteria in our microbiome. Different species produce different effects. Too much of one and not enough of another can throw off our metabolism. It’s all a balancing act. Our continued good health depends on a healthy balance of the good bugs in our microbiome, which brings us to why we take prebiotics and probiotics.

Prebiotics — Feeding Our Microbiome

Just like us, our microbiome needs to be fed a healthy diet. They can only eat what we eat. If we eat a low-fiber and high-fat diet, the balance of our microbiome is affected, with a less-than-optimum outcome. A more favorable microbiome output is produced by a diet rich in fiber and other nutrients. Let’s face it, though: we do not always eat right, and our microbiome is affected. To help compensate, supplement manufacturers are producing a line of products collectively called prebiotics. They are a combination of nondigestible food components that pass through the digestive system to feed the bacteria in our colon. The idea is to selectively stimulate the growth or activity of desirable microorganisms to achieve the optimal outcome for good health. In theory, the idea is sound; in practice, the variability and vast complexity of our microbiome makes desired outcomes much harder to achieve. More research needs to be done.

Caregiving and Prebiotics

The Food and Drug Administration (FDA) treats prebiotics not as a drug, but as a food. As such, the regulations only cover basic nutrition and harmful effects. There is no one guaranteeing that the product contains the correct nutrients any more than they would a bag of carrots.

Health claims cannot be made by the manufacturer of the supplement, so marketing and health claims are done in a roundabout way, mainly through testimonials. If you can trust the person giving the testimonial, you can have a fairly good chance of getting the desired outcome. Otherwise it’s a crapshoot. Health claim testimonials are only good for the specific product that the supposed “expert” has had experience with. There is no guarantee that product A has the same effect as product B, even if the label has the same ingredients. What that means for the caregiver is that the brand of the prebiotic supplements matters. If you want to save money by changing brands you will have to monitor its use for effect.

Prebiotics may not be regulated as a drug, but they are therapy, not food. Caregivers will have to run everything concerning prebiotics by the doctor, including brand changes. It may be easier to simply serve a balanced diet. I suppose that there could be times when a healthy diet is difficult to maintain. My recommendation is to treat prebiotics as another caregiver’s tool to be used with skill and judgment when needed.

Probiotics — Supplementing Your Microbiome

There are all sorts of ways the bacterial makeup of your microbiome can get out of balance. It can range from antibiotic use (killing off good and bad bacteria), a compromised immune system, chronic disease states, poor nutritional choices, and just plain bad luck. Again, supplement manufacturers have stepped up to the plate and offered a solution. Why not take a dose of beneficial bacteria to augment what is already there? And there is scientific evidence that this therapeutic approach actually works.

Fermented foods go as far back as the ancient Greeks, and people of the Middle East have long used them as therapy for a host of human ills. The concept of probiotic supplements was first introduced by Élie Metchnikoff of the Pasteur Institute of Paris in 1907. He noticed that yogurt-eating people of Hungary tended to live longer. He postulated that the good bacteria in the yogurt was a contributing factor for their long life.

Today you can find probiotics in a variety of different products, from food to pills to cosmetic products. The FDA regulates probiotics in several different ways: as a food ingredient, as a supplement, and as a drug. It all depends on how the manufacturer intends their product to be used. Again, you can’t claim a health benefit unless you can prove it scientifically.

Food

Bacterial fermentation is used in the preparation of many foods. Remember the definition of a probiotic: “live” microbes that relay a health benefit. The most common probiotic foods are yogurt, kefir, kombucha, sauerkraut and kimchi. If the product has been pasteurized, all the bacteria has been killed off and it can’t be called a probiotic. Product labeling usually indicates live bacteria and yeast as “active cultured.”

Supplement

You can purchase supplement products containing a collection of good bacterial strains. Probiotics are identified by their specific strain. Product labeling will indicate a bacterial name that will include genus, species and subspecies, if applicable, or they may use a strain nickname.

For example:

Nomenclature for Sample Commercial Strains of Probiotics

Genus Species Subspecies Strain Strain Nickname

Lactobacillus rhamnosus none GG LGG

Bifidobacterium animalis lactis DN-173 010 Bifidus regularis

Bifidobacterium longum longum 35624 Bifantis

Probiotics quantities are measured in colony-forming units (CFU), which indicates the number of viable cells at the time of manufacture. Quantities may be seen as CFU per dose; for example, 1 x 10⁹ for 1 billion CFU or 1 x 10¹⁰ for 10 billion CFU. Current labeling standards only require the manufacturer to indicate the total weight of the microorganism. It may include both live and dead cultures. The CFU may also increase or decrease as the product sits on the shelf.

Drugs

There are drug manufacturers that have gone through the rigors of scientifically proving the safety and efficacy of their product to the FDA. Many are over-the-counter products such as Culturelle Digestive Health, VSL#3 and Phillips Colon Health. Dosing is determined by the doctor or as indicated on the package. Doses are usually taken once a day.

Caregiving and Probiotics

Given the trillions of microbes in our gut, the differences between individuals’ microbiomes, and the variability of ingredients in products, the effectiveness of probiotics therapy is hard to determine. Without more research being done, probiotic use as therapy in a care home setting will be limited to certain cases and conditions.

Probiotics are generally considered safe to use with little to no side effects for caregivers to monitor for. Although, for those with compromised immune systems, there is a chance for bacterial overgrowth. Extra monitoring for signs of infection will be required for these types of residents. Changes in bowel habits may also become problematic for caregivers.

Probiotic foods on the menu are generally not considered therapy any more than prune juice is. It is another tool to be used with skill by the caregiver. Be careful not to cross over the therapy line and use the probiotic food as a way to circumvent the doctor. When in doubt, get the doctor’s approval in writing to cover your tush.

When including probiotic foods on the menu, a few principles to remember are:

“Active culture” products are the most potent ones.
Cooking the food will kill the good bugs.
Serving probiotic foods during antibiotic therapy is a good way of maintaining a healthy microbiome.
You have to serve the foods in large enough quantities so that a portion of the live microbes make it through the stomach acid and digestive processes of the small intestine.
Probiotics in larger quantities given over time can and will affect bowel habits. Monitor for cramping, nausea, soft stools, flatulence, and constipation.

Pharmacology

The role of probiotics in medicine is a matter of ongoing research. In the future, I believe that you will see doctors using them more often. What research has been done has been very promising in some cases and a total bust in others.

Probiotic effect:

Promising outcomes	No effect
Obesity	Crohn’s disease
Diabetes	Ulcerative colitis
Antibiotic-induced diarrhea	Dysbiosis
High cholesterol	Hepatic encephalopathy
Irritable bowel syndrome	Upper respiratory tract infection
Atopic dermatitis	Pancreatitis
Pediatric acute infectious diarrhea	Asthma prevention

According to drugs.com the mechanisms of probiotic actions are:

“probiotics … action may include production of pathogen-inhibitory substances, inhibition of pathogen attachment, inhibition of the action of microbial toxins, stimulation of immunoglobulin A, and trophic effects on intestinal mucosa.”

There is also good evidence that the microbiome “talks” to the brain via the gut-brain axis of the enteric nervous system (ENS). Manipulation of the microbiome is currently being developed as therapy for mental health conditions. Watch for future developments to come.

Synbiotics

I haven’t covered synbiotics a whole lot. In my opinion, I don’t know how effective they would be beyond the obvious convenience of taking one product versus two. I think it’s just a marketing ploy, but they might have their uses. Anyway, we covered the basic principles in the prebiotic and probiotic sections.

Conclusion

I find it very ironic that we as health professionals try so hard to prevent the spread of bacteria, just to turn around and recommend to our patients that it might be helpful to consume more bacteria. Regardless of the irony, probiotic effectiveness has been proven in so many cases that it is now part of our culture. Foster care providers can utilize the concept of good bugs to aid in their caregiving efforts. It’s another tool for the caregiver’s toolbox to be used with skill and care.

As always, good luck in your caregiving efforts.

Mark Parkinson, BSPharm

References:

Probiotics: What You Need to Know. National Center for Complementary and Integrated Health, NIH. 2019. https://nccih.nih.gov/health/probiotics/introduction.htm

Probiotics Fact Sheet for Health Professionals. National Institute on Health Office of Dietary Supplements. June 26, 2019. https://ods.od.nih.gov/factsheets/Probiotics-HealthProfessional/

Probiotic. Wikipedia. Dec.7 2019. https://en.wikipedia.org/wiki/Probiotic

Probiotics. Drug.com Mar. 30 2019.https://www.drugs.com/npp/probiotics.html

Prebiotics, probiotics and your health. MayoClinc. 2019. https://www.mayoclinic.org/prebiotics-probiotics-and-your-health/art-20390058

The Microbiome. Harvard T.H. Chan School of Public Health. 2019. https://www.hsph.harvard.edu/nutritionsource/microbiome/

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A Gut Reaction:

A Gut Reaction:

An overview of the gastrointestinal system and what can go wrong with it

Author: Mark Parkinson BsParm: President AFC-CE

Credit Hours 4- Approximate time required: 240 min.

Educational Goal:

Provide a great understanding of the gastrointestinal tract and it’s associated disorders.

Educational Objectives:

Describe the anatomy of the gastrointestinal tract.

Explain how physiology gastrointestinal tract works.

List and provide an overview of GI specific disorders.

Provide caregiver principles that manage GI symptoms

Procedure:

Disclaimer

A Gut Reaction:

An overview of the gastrointestinal system and what can go wrong with it

Sometimes I think the human body is very strange and frustrating for caregivers. Isn’t it a mystery how the same food served to different residents has such varying effect? The food that makes one resident happy and content gives the other resident gas and diarrhea. Isn’t it strange how a resident can, just out of the blue, develop stomach pains and complain of constipation and bloating? Isn’t it worrisome when those symptoms turn into long-term problems? How is a caregiver supposed to react? Do you just change the menu? Do you start looking for possible health problems? Which diseases do you look for?

Have you ever noticed how many diseases have the same gastrointestinal (GI) symptoms? A resident who complains of chronic nausea, gas, stomachache, diarrhea, or constipation (or both) might be suffering from Crohn’s disease, celiac disease, irritable bowel syndrome (IBS), lactose intolerance, several different cancers, ulcerative colitis (UC) or simple food allergies. I ask you, how’s a caregiver supposed to keep it all straight? Does that resident who complains of chronic irritable bowels have a food allergy or colitis or IBS or, heaven forbid, cancer? How can different diseases have the exact same symptoms, for goodness’ sake? More importantly, how is a caregiver supposed to cook for and take care of the resident with chronic stomach complaints?

What you need is more knowledge about the digestive system. As a medical professional, you need to be a little higher on the learning curve than other people. As a foster care provider that manages a resident’s diet, you need more training on how food affects your clientele. Let’s work on those things. It’s my “gut reaction” that you will receive some useful information that will help you in your caregiving when something goes wrong in the gut.

Structure (Anatomy)

The Gut

To understand what’s going wrong, you first have to understand what’s going on. Let’s go over the basic anatomy and physiology of your inner parts. Your gut is essentially a long tube that passes through your body from your mouth to your bottom, with a bunch of other organs that feed into it. It has been called the digestive system, the gastrointestinal tract, the GI tract, and the alimentary canal. It is used to take in food and liquids, break them down, absorb the useable material, and then excrete what’s left over.

Interesting fact

Medically speaking, the inside of the gut is considered to be outside of the body. That explains why it take a while for medication to start working: It has to be absorbed first. The drug is not really in the body until after it makes it through the lining of the gut.

At any given time, there are tens of thousands of different reactions occurring all along the GI tract. That’s way too many to comprehend all at once, so let’s break the gut down into more easily understandable parts.

The gastrointestinal tract is a series of tubes closed off from each other by various structures. The GI tract consists of the mouth, pharynx, esophagus, stomach, small intestine, large intestine, rectum and anus. Add to that the salivary glands, liver, pancreases, gallbladder, blood vessels, nerves and hormones, and you get the digestive system. The gastrointestinal tract is also commonly divided into the upper GI tract (the mouth to just past the stomach) and the lower GI tract (most of the small intestine to the anus). The entire digestive system is wrapped up and held in place by a membranous sac called the peritoneum.

Histology (Gastrointestinal Tissues)

The tissues that make up the GI tract are made up of four different layers: the mucosa, submucosa, muscular layer and adventitia or serosa. Each section of the GI tract has additional specialized cells that aid in the digestion process.

Lumen

The lumen is not a tissue; rather, it’s the hollow part at the center of any tube. It’s the canal that the food travels down.

Mucosa

The mucosa is the innermost layer, the part that comes in contact with the food. It’s where most of the digestive action takes place. It’s packed with specialized cells that perform the necessary functions of the different areas of the alimentary canal.

The mucosa itself has three layers:

The epithelium, which contains the cells that excrete, absorb, and digest.
The lamina propria, which is mainly connective tissue.
The muscularis mucosae, a thin layer of smooth muscles that helps move the food around.

Submucosa

The submucosa is the next layer out. It mainly contains dense connective tissue that houses large blood vessels, nerves, and lymph vessels.

Muscular Layer

The muscular layer is made up of two levels of muscle tissue laid down in two separate ways. The inner layer wraps around in a circular manner. It prevents the food from traveling backwards. The outer layer is laid out lengthwise. When the muscles contract, they move the food forward. Between the muscle layers lies the myenteric plexus. It is the part of the nervous system that controls the muscles. Think of it as the pacemaker of the gut; it starts the rhythmic contraction called peristalsis.

Peristalsis is the wave of muscular contractions that run the length of the alimentary canal. It involves all three layers of muscle of the gut, including the thin muscle layer in the mucosa.

Interesting Fact

Peristalsis occurs at different rates in different parts of the GI tract — roughly three contractions per minute in the stomach, 12 per minute in the duodenum, nine per minute in the ileum, and one per 30 minutes in the large intestines. Of course, the presence of different kinds of foods affects the rate of contraction. More about peristalsis later.

Adventitia and serosa

The outermost layer of the GI tract has several layers of connective tissues that include the adventitia and serosa. I know that was a lot to take in. Don’t worry, though; it will all start to come together for you as we talk about the function of the gut’s different parts.

Function (Physiology)

To help you understand the functioning of the digestive system I want you to stop reading and go grab a snack. Get something substantial and delicious. Go ahead, I’ll wait…. (If the snack involves chocolate, bring enough for me too.) Got it? Good. Take a big bite.

We’re going to follow that bite down the digestive tract. The first step in that journey starts in an unusual place: the brain.

Cephalic Phase of Digestion

There is a two-way communication connection between the gut and the brain called the gut-brain axis. It involves hormones and the autonomous nervous system (the nervous system that operates without much conscious thought). When you think about food, the brain automatically sends signals to the digestive system to get ramped up. It says, “Get ready, food’s coming.” The salivary glands start to produce saliva, peristalsis increases, and other systems are stimulated. Oh, by the way, in case you haven’t guessed it already, cephalic means pertaining to the brain.

The Mouth

After you take your first bite of food, the chewing process starts to break down the food and mixes it with saliva. The saliva moistens the food and turns it into an easily transportable soft mass called a bolus. Enzymes in the saliva start to chemically break down the bolus. Sensory signals are sent back to the brain and your brain decides if it likes or dislikes the food you’re chewing.

Interesting Fact

You have three pairs of salivary glands and they normally produce about two pints of liquid a day.

Esophagus

If your brain decides it likes or at least tolerates the snack you have chosen to eat, you swallow the bolus and it travels down the esophagus. As the bolus bulges into the esophagus, stretch receptors trigger a peristaltic reaction. Muscles relax in front of the bolus and contract around the bolus, propelling the food toward the stomach.

Stomach

Your snack bolus enters the stomach when the peristaltic wave relaxes the muscles of the esophageal sphincter. A sphincter is a band of muscles that closes off certain parts of the GI tract. Once in the stomach, the food is churned and mixed with stomach acids, enzymes, and fluids until it has turned into a liquidy paste called chyme. The chyme is then pushed through the bottom pyloric sphincter into the small intestine about an eighth of an ounce at a time.

Interesting Fact

The stomach acid and enzymes are very powerful. They are just about as strong as battery acid in breaking down material. The GI tract has layer upon layer of protection so that we don’t digest our own gut.

Small Intestine

Your snack’s chyme enters into the small intestine where it is mixed with other digestive juices to continue the breaking-down process. It also produces chemicals that start to reduce the acidity of the chyme. The small intestine can be broken down into three sections:

Duodenum – The duodenum is the upper part of the small intestine. It is the section where more digestive juices come from the pancreas, liver, and gallbladder.
Jejunum – Digestion continues in the next section, called the jejunum. The nutrients from your snack start to be absorbed into your bloodstream.
Ileum – The longest and final section, called the ileum, is where the majority of your snack’s nutrients are absorbed. Most of the stomach acid has been neutralized by this time.

Pancreas, Liver and Gallbladder

Digesting the food we eat is a very tough job. The food must be broken down to the molecular level. The pieces have to be small enough to make it through the gut lining, flow into the bloodstream, and eventually be absorbed into each individual cell. To help, the pancreas, liver, and gallbladder produce digestive chemicals and hormones that aid in the digestive process.

Pancreas – The pancreas lays just behind the stomach and is connected to the duodenum by the pancreatic duct. Through the duct flows many of the enzymes that break down the individual components of your snack. For example, proteins and carbohydrates are still too large to be absorbed through a cell wall so enzymes chop up the molecules into smaller molecular chunks. The pancreas also produces the hormone insulin. It is delivered directly into the bloodstream. Hormones are chemicals our bodies use to control the body’s functions, including digestion, but that’s a story for another time.
Liver – The liver lays just below the diaphragm. The liver has four main functions: 1. breaking down or converting substances in the bloodstream, 2. extracting energy from the nutrients we eat, 3. breaking down toxins so they are less harmful to the body and removing them from the bloodstream, and 4. producing bile that is stored in the gallbladder. Actually, the liver is the chemical workhorse of our body. It accomplishes over 500 different reactions. It’s where the nutrients are first sent after being absorbed into the bloodstream. In the liver, the nutrients are stored or converted into more useable molecules, like glucose.
Gallbladder – The gallbladder is a small pouch just below the liver. It stores bile, which is used to break down the fats we eat. It empties into the duodenum at the same place as the pancreatic duct.

Large Intestine

What’s left of your snack now flows into the large intestine at a structure called the cecum. The cecum is the part that has the appendix attached to it. From the cecum, the residue flows into the colons (ascending, transverse, descending, and sigmoid). The large intestine’s job is to reabsorb all the useful material, leaving only a waste byproduct we call the stool.

Rectum and Anus

Once the water is removed from the stool, the stool collects in the rectum. As the rectum lining stretches, signals are sent to the brain via stretch-sensing nerve receptors. They signal the need to defecate. The anus (which is really a muscular sphincter) is told by the brain to relax and we eliminate the indigestible bits of the snack you ate hours ago.

Interesting Fact

The time it takes for food to pass from the mouth to your bottom is highly variable and dependent on several factors. I found this information at the Mayo Clinic’s website.

“Digestion time varies between individuals and between men and women. After you eat, it takes about six to eight hours for food to pass through your stomach and small intestine. Food then enters your large intestine (colon) for further digestion, absorption of water and, finally, elimination of undigested food.

“In the 1980s, Mayo Clinic researchers measured digestion time in 21 healthy people. Total transit time, from eating to elimination in stool, averaged 53 hours (although that figure is a little overstated, because the markers used by the researchers passed more slowly through the stomach than actual food). The average transit time through just the large intestine (colon) was 40 hours, with significant difference between men and women: 33 hours for men, 47 hours for women.”

Source: https://www.mayoclinic.org/digestive-system/expert-answers/faq-20058340

Nervous System

Remember when I told you how the brain talks to the gut via the gut-brain axis? Well, the gut talks back to the brain as well. There are over 100 million nerve cells in the digestive system. Collectively, they are called the enteric nervous system (ENS). Some medical professionals call it the body’s “second brain.” The gut also produces many hormones that chemically “talk” to the nervous system. The information superhighway between the brain and the gut is the vagal nerve. It is responsible for the majority of the nerve signals along the gut-brain axis. The gut-brain axis “nerve talk” consists of things like, “I want a snack,” “You ate too much snack,” “You ate harmful things as a snack,” “You’re allergic to the snack,” and “Boy, that snack was satisfying.”

Food is not the only thing talked about between the gut and the brain. Ever heard of a nervous stomach, or “I’m just too nervous to eat right now”? Emotions have a large effect on the gut. Warning signals also are communicated back to the brain from the gut. You can “feel/sense” when things are going wrong. We can sense inflammation, infection, dehydration, organ malfunction, and many other things. You’ve all heard of the saying, “I’ve got a gut feeling that something is wrong.”

Microbiome (Bacteria)

What used to be called the gut flora is now referred to as the microbiome, for it is truly a fully functional environment all to itself. There are tens of trillions of bacteria in our gut and on our skin, with over 1,000 different known species of bacteria. Each is a chemical-producing factory. The microbiome can weigh up to 2 kilos! Functionally, the microbiome in our gut has even been referred to a digestive organ.

The role of bacteria in the gut – Our microbiome eats what is left over after digestion. Included in their byproducts are some important nutrients that are vital for keeping us healthy. They produce vitamin K, folate, vitamin B12, and short-chain fatty acids our intestinal cells can use as fuel. The bacteria are our first line of immunity defense. They limit and control the bad bugs and even help in breaking down some toxins. We are used to thinking of bacteria as infectious parasites, but for most of our microflora, we should think of them as our gut garden. Properly balanced, the garden helps keep us healthy. Out-of-balance gut gardens can cause problems and disease.
Bacteria can “talk” to our brain too – New research has identified several different ways that the microbiome communicates with the brain through the enteric nervous system. They may have a larger role in influencing how we feel than was previously thought. An improperly balanced microbiome is proving to be a major factor in many disease states.

Interesting Fact

There are 10 times more microbiome cells than human cells in and on our body. There are also 150 times more genes in our gut garden than our own human genes.

Source: https://www.gutmicrobiotaforhealth.com/en/about-gut-microbiota-info/

Caregiving and the Gut

You now are higher on the digestive system learning curve. You can apply this knowledge as you go about your caregiving duties. It will give you more expertise in interacting with your residents and fellow medical professionals.

You are also better primed to learn about what can go wrong in the digestive system. Already you can start to appreciate just how complex and variable the gut is. How so many factors are involved in even the most basic of GI functions. I bet you that you are even starting to think of ways to change your caregiving efforts. Let’s add even more to your understanding and medical know-how.

Gastrointestinal Pathology

Symptomatic problems can occur anywhere along the GI tract as our gut reacts to the normal variability of life events.

For example:

Get dehydrated and the colon tries to pull more water from the stool, resulting in constipation.
Eat something the body doesn’t like and the ENS will try to get rid of it quickly through a bout of diarrhea.
Become too nervous and the brain overstimulates the stomach, causing a nervous stomach.

Most of the time the symptoms resolve themselves. The caregiver normally doesn’t have to be too concerned over such things. Caregiving red flags start to fly, though, when a symptom occurs over and over again or the symptoms doesn’t resolve itself and becomes a chronic issue. These are the problems that makes the caregiver start to worry. Is what you are seeing the start of something serious? We’re going to cover the disorders that occur inside the gastrointestinal tract so you can more readily answer that question.

Terminology

Gastrointestinal pathology can refer to any disorder, disease, or syndrome that occurs primarily within the GI tract. In medical terms, the words disorder, disease, and syndrome mean different things.

Disorder – a derangement or abnormality of function; a morbid physical or mental state.
Disease – An abnormal condition of a part, organ, or system of an organism resulting from various causes, such as infection, inflammation, environmental factors, or genetic defect, and characterized by an identifiable group of signs, symptoms, or both.
Syndrome – A group of symptoms that collectively indicate or characterize a disease, disorder, or other condition considered abnormal. Source: The Free Dictionary by Fairfax

If you’re thinking that this still isn’t very clear, I agree. For the purpose of this course only, I will define a disorder as any abnormality of function from any cause. A disease is an abnormality that has an identifiable set of symptoms, and a syndrome is a condition or a group of symptoms where at least some of the causes are unknown.

I am going to exclude other conditions that have GI effects but originate outside the gut, like depression or Parkinson’s disease. We are also going to cover just the most common maladies. Could you imagine how long this article would be if we covered everything? It would be encyclopedia big. I just don’t have the energy to write that. So, presenting in no particular order, starting generally with the mouth and progressing toward the bottom, let’s start getting you higher on the GI pathology learning curve.

GERD

GERD stands for gastroesophageal reflux disease. It has also been called acid reflux disease. It is a condition where stomach acid backs up into the esophagus and causes damage. The esophagus does not have the same protective layers the stomach does. When the stomach acid and enzymes of the gastric juice reflux into the throat, the tissues start to break down. We feel that damage as heartburn. Other symptoms of GERD are:

Bloating
Bloody or black stools or bloody vomiting
Burping
Dysphagia — the sensation of food being stuck in your throat
Hiccups that don't let up
Nausea
Weight loss for no known reason
Wheezing, dry cough, hoarseness, or chronic sore throat
Dry cough

If the symptoms occur more than twice week, last for hours, or occur often enough to be unusual, it might be time for a caregiver to call a doctor.

Causes

Several different factors can cause gastric juice to reflux back into the esophagus. For example, perhaps the lower esophageal sphincter (LES) is damaged or obstructed, the tone of the muscle is weakened, nerves that control the muscles do not function normally, or the pressure on the stomach is too much for the sphincter. The end result is all the same — a leaky LES.

Risk Factors

Caregivers should keep a closer eye on their residents who have:

Obesity
Bulging of the top of the stomach up into the diaphragm (hiatal hernia)
Pregnancy
Connective tissue disorders, such as scleroderma
Smoking habits

Interesting facts

Incidents of reported cases of GERD are increasing. Hospitalizations for GERD 1998 were 995,402. In 2005 that number climbed to 3.14 million. Between 1998 and 2005 42 percent more infants and 80 percent more children ages 2–17 were hospitalized because of GERD.

Source: https://www.healthline.com/health/gerd/facts-statistics-infographic#2

Gastric Disorders

Gastric means “pertaining to the stomach” and disorder means “pathological condition.” Or, in everyday terms. things are not right in the tummy.

Gastroparesis – A condition where the stomach cannot empty itself in a normal fashion; usually muscle contraction is slowed or delayed. It is caused by nerve damage to the vagal nerve or the ENS. The nervous system is affected by uncontrolled diabetes, drugs (narcotics and antidepressants are common culprits), viral infections, and other nervous system diseases.

Symptoms include:

Heartburn or gastroesophageal reflux (backup of stomach contents into the esophagus)
Nausea
Vomiting undigested food
Early satiety (feeling full quickly when eating)
Abdominal bloating (enlargement)
Poor appetite and weight loss
Poor blood sugar control

Gastritis – Inflammation of the stomach lining. Most often from an infection. Overuse of drugs and alcohol can also inflame the stomach. Symptoms are obviously a stomachache.
Dyspepsia – In a word, indigestion. Dyspepsia is usually just the result of bad luck, poor choices, or nerves. The savvy caregiver should not automatically write off indigestion symptoms, though, especially repeated or chronic occurrences. That is not normal and definitely could be a red-flag symptom of something worse.

Peptic Ulcer Disease (PUD)

PUD refers to both gastric (stomach) and duodenal ulcers. An ulcer is a small hole in the protective lining of the GI tract. When gastric juices flow through the hole and come in contact with the gut tissues, damage occurs. Bleeding into the GI tract may occur.

The symptoms of an ulcer are:

A gnawing or burning pain in the middle or upper stomach between meals or at night
Bloating
Heartburn
Nausea or vomiting (the vomit may appear red or dark-colored)

Some ulcers do not cause pain, or the pain is masked by other factors. The pathology is manifested in other ways:

Dark or black stool (due to bleeding)
Intolerance of fatty or acidic foods or other appetite changes
Unexplained weight loss
An increase in anxiety or shortening of breath
Feeling faint or lightheaded

Causes

There are three major factors that can disrupt all the protective layers of the upper GI system: Bugs, Drugs and Stress.

Bugs – Helicobacter pylori bacteria commonly live in the mucosal layer. If a colony grows abnormally large, the protective layers are disrupted and an ulcer occurs.

Drugs – The long-term use of certain drugs disrupts the production of mucus, leading to inadequate protection. NSAIDs, aspirin, SSRIs, antidepressants, Fosamax, and Actonel all list ulcers as possible side effects of continued use.

Stress – Stress can overstimulate the upper GI, which leads to an increased production of gastric juices and changes peristalsis. Eating a lot of acidic foods doesn’t help the situation, either.

Risk Factors

Smoking, alcohol, chronic stress, spicy foods, and a weakened immune system can all cause or aggravate PUD.

Interesting fact

A quote from an article I found.

The ENS may trigger big emotional shifts experienced by people coping with irritable bowel syndrome (IBS) and functional bowel problems such as constipation, diarrhea, bloating, pain and stomach upset. “For decades, researchers and doctors thought that anxiety and depression contributed to these problems. But our studies and others show that it may also be the other way around,” Pasricha says. Researchers are finding evidence that irritation in the gastrointestinal system may send signals to the central nervous system (CNS) that trigger mood changes. “These new findings may explain why a higher-than-normal percentage of people with IBS and functional bowel problems develop depression and anxiety.”

Source: John Hopkins, https://www.hopkinsmedicine.org/health/wellness-and-prevention/the-brain-gut-connection

Celiac Disease

Celiac disease is an abnormal reaction to gluten, a protein that is found in wheat, rye, and barley. When those who are genetically predisposed eat gluten, the immune system responds by attacking the lining of the small intestine. Celiac disease is not a food allergy but an abnormal autoimmune response. It can cause pain and discomfort and also lead to serious disruption of the absorption of nutrients in the small intestine. The autoimmune response is variable between different patients.

Causes

The exact cause is unknown. Genetics plays a role in inheriting the condition as well as infant feeding practices, bacterial infections, and microbiome imbalance.

Risk Factors

Those with a milder response may not even know they have the disease and attribute symptoms to other conditions. Caregivers, especially those who take care of developing children, should look for:

Nausea and vomiting
Chronic diarrhea
Swollen belly
Constipation
Gas
Pale, foul-smelling stools
Dermatitis — the rash usually occurs on the elbows, knees, torso, scalp, or bottom

Chronic uncontrol reactions can lead to the malnutrition problems of:

Failure to thrive for infants
Damage to tooth enamel
Weight loss
Anemia
Irritability
Short stature
Delayed puberty

Crohn’s Disease

Crohn’s disease is a chronic inflammatory bowel disease, or IBD. In Crohn’s a patch or patches of the GI tract become temporarily reddened, swollen, and painful. Most often it is felt in the ileum of the small intestine but can be experienced in any part of the GI tract. Crohn’s flare-ups can affect the entire thickness of the bowel wall. The inflammation can even spread to areas of the body outside the gut. The inflammation can be quite debilitating.

Causes

It is unclear why Chron’s disease occurs. Genetics and environmental factors play a key role in flares.

Risk Factors

There are no general risk factors for Chron’s, though it appears it can be inherited. It can happen to anyone at any age. Most initial diagnoses occur in adults and adolescents. Flares can occur gradually or come on suddenly. Caregivers should watch for flare-up signs of:

Diarrhea
Fever
Fatigue
Abdominal pain and cramping
Blood in your stool
Mouth sores
Reduced appetite and weight loss
Pain or drainage near or around the anus due to inflammation from a tunnel into the skin (fistula)

Ulcerative Colitis

Another IBD is ulcerative colitis (UC). It differs from Chron’s disease in that it affects only the innermost layer of the colon and rectum. Unlike the patchiness of Chron’s, UC uniformly involves large portions of the colon and rectum.

Doctors will classify UC occurrences by where it is located and label them accordingly. The different names can cause caregivers to think a different disease is occurring, which can lead to some confusion for caregivers. If you see the following names, remember, it’s actually ulcerative colitis.

Ulcerative proctitis
Proctosigmoiditis
Left-sided colitis
Pancolitis

Ulcerative colitis symptoms most often are mild to moderate and usually develop over time. If left untreated, UC can lead to holes in the lining of the colon wall. Caregivers should watch for:

Diarrhea, often with blood or pus
Abdominal pain and cramping
Rectal pain
Rectal bleeding — passing small amounts of blood with stool
Urgency to defecate
Inability to defecate despite urgency
Weight loss
Fatigue
Fever
In children, failure to grow

Interesting Fact

The inflammation that occurs in inflammatory bowel diseases can spread outside of the gastrointestinal tract. Inflammatory symptoms and the accompanying pain occurs in the skin, joints, and eyes during IBD flareups.

Polyps and Colorectal Cancer

Colon polyps are a small group of cells that have grown abnormally. They form bumps or mushroom-like stalks in the inside lining of the large intestine, rectum, and other places in the body. Most polyps are benign, meaning that they are non-cancerous. Unfortunately, there is always the potential of cancer developing over time, usually after many years, especially if the polyps are larger. Anyone can develop polyps, but you are more like to have them if you are older than 50, a smoker, obese, have a family history of occurrence, or have a history of colon cancer.

Causes

Abnormal growth sometimes happens without any discernable cause; other times, repeated cell damage or chronic inflammation triggers their growth. Other known causes are:

A foreign object
A cyst
A tumor
Mutation in the genes of the colon cells
Toxin exposure to such substances as tobacco and alcohol

Signs and Symptoms

Most polyps appear without any outward signs or symptoms. If they turn cancerous or become large enough to cause obstruction, the following symptoms may occur:

Blood in stool
Abdominal pain
Constipation
Diarrhea

Diverticular Disease

Diverticular disease is the manifestation of diverticula in the colon. Diverticula are the opposite of polyps. They are outpouching pockets, small sacs that develop at weak points in the colon wall. Diverticular disease presents itself in a severity spectrum based on symptom presentation. On the mild side you have diverticulosis, which is a common condition of diverticula without any outward symptoms. Mid-range is diverticula, in which one develops holes that bleed into the stool. On the severe side you have diverticulitis, where the holes have developed painful infections.

Causes

Diverticula are thought to be caused by the extra pressure exerted from repeated bouts of constipation. Increased constipation is most commonly caused by dehydration or a poor diet that is high in fat and low in fiber. Old age is also a contributing factor.

Interesting Fact

It is a common myth that eating seeds and nuts causes diverticulitis, but there’s no actual proof that this actually occurs.

Signs and Symptoms

Lower abdominal pain
Fever
Rectal bleeding

Risk Factors

Aging, especially after age 40
Obesity — increased pressure on the gut
Smoking
Lack of exercise — lower muscle tone creates weaknesses
Diet high in animal fat and low in fiber

Hemorrhoids and Anal Fissures

Hemorrhoids are swollen and inflamed veins in the lower rectum and anus. Anal fissures are small tears in the lining of the anus. Hemorrhoids are a common occurrence in older adults and are sometimes called piles. Anal fissures may be seen in newborns and infants. The irritation that is felt may lead to anal sphincter spasms.

Causes

Occurrences are plainly a matter of too much pressure on weakened tissues. The extra pressure and tissue weakness has varying causes. Sometimes the cause is unknown; sometimes it’s just a matter of standing too long. Other known contributing factors are:

Aging
Chronic constipation or diarrhea
Pregnancy
Heredity
Straining during bowel movements
Faulty bowel function due to overuse of laxatives or enemas
Spending long periods of time on the toilet (e.g., reading)

Risk Factors

Aging
Obesity
Chronic inflammatory conditions

Interesting Fact

Hemorrhoids are common in both men and women and affect about 1 in 20 Americans. About half of adults older than age 50 have hemorrhoids.

Source https://www.niddk.nih.gov/health-information/digestive-diseases/hemorrhoids/definition-facts

Malabsorption Syndromes

Malabsorption syndromes are a group of disorders that affect absorption of nutrients in the small intestine. They either result from improper digestion of food or a disturbance in the absorption process. The result is the same: malnutrition. It can be a temporary condition (like the recovery time after a surgery) or a permanent problem that has long-term consequences.

Malabsorption causes diarrhea, weight loss, and bulky, extremely foul-smelling stools. It throws off the balance in the gut garden and makes your resident chronically feel bad.

Causes

For the most part, this is a secondary condition that is being caused by other things. Just about every disease listed in this section, bad genes, or a completely unknown cause could be contributing factors.

Risk Factors

Caregivers of the developmentally challenged and the chronically ill should keep an eye on the overall gut health of the resident. It is going to require a more intense focus on the diet of the resident. In this case, food (or the nutritional elements in the food) becomes therapy.

Food Allergies and Intolerances

Two of the causes of malabsorption are food allergies and food intolerances. They can have similar symptoms but are really two different conditions. The real difference between them is in the consequences of long-term exposure to the offending food type.

Food Intolerances are the result of the body being unable to digest a specific food properly. Part of the digestive system is missing or broken. The most well-known is lactose intolerance. The patient’s body does not produce lactase, an enzyme that is required to break down some of the proteins in dairy products. The result is the undigested protein flows into the colon, creating a food source for bacteria. The bacteria love it. They eat it all and produce byproducts that result in the symptoms that the patient feels. An example is CO2, which builds up and causes bloating and flatulence (farting).

Food allergies are the result of an overreaction of the immune system. When exposed to a certain food, the immune system thinks that the body is being invaded by a foreign substance and triggers inflammation. The inflammation shows as redness, rash, itching, swelling, and fever. Since all this is happening on the inside as well as the outside, the patient can also experience nausea, vomiting, and diarrhea.

The Difference: Consequences of Exposure

The difference between food intolerance and allergy is how much inflammation there is. In food intolerance, a small amount of food causes little or no reaction. In a true allergy, even a microscopic amount of food breathed into the lungs can trigger a full-blown reaction. Also, the more exposure to the food (allergen), the more severe the response can get. That includes the lungs swelling up inside, causing breathing difficulties and death (anaphylaxis).

For caregivers, the difference between the two is crucial in managing the diets of their residents and what to do after exposure happens.

Interesting Fact

90% of human food allergies are the following:

Cow’s milk
Soy
Eggs
Wheat
Fish and shellfish
Peanuts and tree nuts

Irritable Bowel Syndrome (IBS)

Irritable bowel syndrome is a condition where the patient experiences a certain set of symptoms. Doctors call it a syndrome because no one knows what causes these symptoms and there are no medical tests that can be used in diagnosing what is going wrong. It all comes down to the skill of the doctor in recognizing the following symptoms as IBS.

Abdominal pain, cramping, or bloating that is typically relieved or partially relieved by passing a bowel movement
Excess gas
Diarrhea or constipation — sometimes alternating bouts of diarrhea and constipation
Mucus in the stool

You’ll notice that the list is very general. A lot of other gut problems could cause those symptoms. What most doctors end up doing is running a bunch of tests that eliminate all other possible causes. If no other conditions exist, then they call it IBS. That is why I left IBS for last. It helps you understand what a doctor has to go through before he can say someone has irritable bowel syndrome.

Causes

Even though the cause of IBS is still unknown, researchers strongly suspect that:

The muscle contraction mechanism is involved. Muscle contractions that are stronger and last longer lead to gas, pain, and diarrhea. Muscle contractions that are weaker lead to constipation.
Something has gone wrong with the nervous system and the GI tract. You remember the gut-brain axis?
The gut’s microbiome is a contributing factor. It’s either a communication problem, an imbalance, or something yet unknown.
Environmental factors can trigger an episode. For example, food intolerances or allergies can cause an IBS flare.
IBS is not caused by stress, but stress can make symptoms worse.

Interesting Fact

Women are twice as likely to experience symptoms of irritable bowel syndrome. It is thought that hormones may play a role in IBS.

Risk Factors

Irritable bowel syndrome is not a serious or life-threatening condition. So far, no long-term consequences have been reported. There is a very small risk of it contributing to the severity of other GI pathology. However, it can seriously impact a patient’s wellbeing and quality of life. You can imagine what it would feel like to suddenly have a painful spasm in your lower abdomen. In fact, doctors used to call IBS a spastic colon. Identifying and managing triggers becomes a major part of therapy.

Caregivers and GI Pathology

You are now even higher on the digestive system learning curve. You have a broader base of knowledge and are more capable of understanding what’s behind the abdominal difficulties that your residents are experiencing. Communications with other health professionals should be that much easier as well. It’s kind of hard not to feel foolish when you don’t have the foggiest idea what’s going on. You should now have more confidence in asking the right questions and understanding at least some of the answers.

We’re not done with the learning yet. Let’s get you even higher on the digestive system learning curve and cover the topic that really matters to in-home caregivers: GI caregiving expertise.

Gastrointestinal Caregiving

The same symptoms for so many conditions

There are only so many ways the body can signal that something is going wrong. For example, if a resident’s colon has Chron’s disease, or lactose intolerance, or inflammatory bowel disease, it’s going to feel bloated, painful, and have diarrhea. Same symptoms, different conditions … because they all involve the colon. Easy enough to understand. I’m going to take advantage of that fact and make this course easier for you. I’m going to lump all the caregiving concepts of all the conditions as if they were all the same, with a few notes on subtle differences in between diseases when applicable. So let’s get to it.

Interesting Fact

About 60 to 70 million Americans are affected by digestive diseases.

Prevention

The easiest way to take care of a malady from a caregiving point of view is to prevent it from happening in the first place. I know foster care providers can’t do much in preventing diseases from occurring. Genetics, environmental factors, and lifestyle choices have all occurred way before the resident moves into your home. The damage has already been done.

But, the patient is now in your home and you are in control of the environmental factors and lifestyle choices. You can help the resident live a healthy lifestyle that will have a big impact on symptom flare-ups. It’s what foster care providers do better than any another health professional.

Caregiver Tips to Maintain a Healthy Gut

Reduce stress. A calm, content resident is an easier resident to take care of. That includes reduced abdominal issues.
Eliminate the obvious symptom triggers. No smoking, no alcohol, reduce caffeine intake, limit spicy foods, reduce fatty and processed foods, and control exposures to allergens.
Walks are my preferred mode of keeping the resident moving. Couch potatoes are more likely to require more caregiving efforts in the long run, not less. Kind of ironic, isn’t it.
Plenty of fluids. The digestive highway is a road paved with water.
Be mindful of how the whole body works. Engage in holistic caregiving. Take advantage of aromas to stimulate appetite. Include residents’ favorites in the menu. Pay attention to food textures. Encourage slower eating habits and chewing properly. Eating too fast and swallowing big chunks can trigger symptoms.
Eat on a schedule. It’s easier for the cook, and better for the resident.

Monitoring

Foster care providers are the eyes and ears of the doctor. More than any other health professional, they are in the best position to tell when things are going wrong. That is what it all boils down to: recognizing what is different. Establish a routine and start to pay attention when the resident deviates from the norm. Once the behavior has got your attention, look for patterns. Don’t get excited about one-offs. Look for repeating symptoms, except when it’s severe. Start keeping notes so that you can pass on the important details to the doctor. Don’t worry about figuring out what is going on; that’s what you pay the doctor for. Your role is the attention-getting red-flag-waver. If you do recognize something the doctor isn’t paying attention to, the most diplomatic way to handle it is by asking pointed questions. For example, “Doctor, I noticed that my resident gets an upset stomach after eating dairy, but I could not see any evidence of inflammation or a rash. Do you think it’s lactose intolerance?”

The overriding principle for all foster care monitoring is “When in doubt, call it out.” And keep calling it out until you’re satisfied with the answer or outcome. When you “call it out,” have some data to support your concern or no one will pay attention to you in the future.

Interesting Fact

Most caregivers use a menu. It’s the most efficient and cost-effective way of feeding everyone. Did you realize that the menu can also be used as a food/symptom diary? Pretty cool, isn’t it? Paying attention to how the resident reacts to the menu steps up your monitoring and recordkeeping with hardly any extra effort.

Diet/Nutrition

Simply put, diet is what you serve your residents and nutrition is what your residence absorbs. In GI disorders, they aren’t necessarily the same. There are many conditions that prevent the absorption of vital nutrients. As a caregiver/cook, malnutrition is something to be concerned over. The question is, does your resident get enough of the right foods? On the other hand, certain foods are triggers for symptoms. So, the flipside of the issue is, what foods are you giving too much of?

Now we’re crossing over into a foster care therapy twilight zone. The questions are:

When does food become therapy?
How much do you involve the doctor in planning the menu?

Fortunately, I found the answers in doing my research for this course. The answer to question 2 first: There is no special diet for any given disease. There are just too many variables to establish a “one menu fits all” diet. It’s all a matter of taking what you’re cooking and tweaking it according the needs of the resident.

Now here’s the answer to question 1: In my experience, doctors don’t spend a whole lot of time counseling on menu choices. But, if they do write something down and hand it to you, food has become therapy. You’re required to adjust your cooking accordingly.

In these cases, my advice for caregivers/cooks is to cook from scratch. It gives you a lot more control in dealing with special needs. Instead of having to cook two separate meals, you just tweak the ingredients in a dish or adjust a smaller portion of a dish to meet the needs of therapy.

Cooking from scratch also has the benefits of avoiding preservatives and food additives, as many are known triggers of GI symptoms. It’s also cheaper — you make more profit that way. You can regain some of the convenience lost in cooking from scratch by doubling or tripling the batches and freezing the leftovers. Ta-da, instant meal. Slow cookers are also a great way to cut the labor of home cooking.

General Dietary Guidelines for GI Disorders

Fats – Fatty foods are harder to digest. They also trigger the bowel’s muscles to contract harder to move the food through. Both are bad things for all the inflammatory GI conditions. But we like fat. Our body craves it; it’s in our genes. Don’t try to eliminate fat, just cook smarter. Lean meats, trim that big hunk of fat off the pork roast, and cook with more olive oil. Here’s a trick I learned: instead of cooking veggies in butter, try chicken bouillon in water. It’s just as savory. During severe flare-ups it’s best to go fat-free.
Fiber – Fiber is the part of the plant foods you eat that can’t be digested and absorbed. It just passes straight through your gut. Fiber increases the weight and size of your stool and softens it. The result is a bulky stool that triggers peristalsis, making it easier to pass through the gut. It’s good for chronic constipation, but bad for an inflamed colon. It’s a balancing act between the two conditions. A couple of ways to adjust the menu are: Leave the skins on fruits and veggies for more fiber, and off for less. Processed foods for less fiber, unprocessed foods for more. Examples: white bread vs. whole grain, applesauce vs. a raw apple, grape juice vs. grapes. If you use bulk fiber, you’ve got to keep hydrated or it will cause constipation.
Foods that cause gas – We can’t digest fiber, but our gut biome can. Good for our garden, which is good for us. Bad for GI problems because a side effect is CO2 gas. Bloating doesn’t feel too good and can be a symptoms trigger. We won’t even talk about the smell. Here is a list of foods that are more likely to cause issues for compromised guts.

Beans
Cabbage
Legumes (like peas, peanuts, soybeans)
Cauliflower
Broccoli
Lentils
Brussels sprouts

Source: https://www.aboutibs.org/ibs-diet/foods-that-cause-gas-and-bloating.html

A final note about gas: Some sugar-free candies and desserts are sweetened with sweeteners that we can’t digest but bacteria can. The result? Too much sugar-free chocolate candy equals more gas and diarrhea. Bad for symptom flares.

Interesting Fact

The average person passes gas 14 to 23 times a day.

Lack of Appetite

During symptom flare-ups, residents are understandably not going to want to eat. Here are a few menu suggestions that might help.

Cream of Wheat and Cream of Rice are well tolerated.

During vomiting and diarrhea episodes, electrolyte drinks like Gatorade or Pedialyte replace lost fluids and minerals.

Meal replacement drinks like Ensure and Boost give a lot of nutrition in a small drink. You can pack even more nutrients in a drink by adding Carnation Instant Breakfast to the glass. Use with skill because so much at once might be a symptom trigger.

There are a lot of good food replacements for when wheat and dairy products are an issue: rice milk, soy milk, rice pasta, almond flour, brown rice flour, etc. Check out the gluten-free section of the grocery store for more ideas.

Probiotics and Prebiotics

Probiotics are bacterial and yeast cultures and prebiotics are the material that they feed on. You get them as a supplement and in certain foods like yogurt, kefir, sauerkraut, tempeh, kimchi, pickles, buttermilk, and certain cheeses. It is tempting to say that probiotics are the good bugs of our microbiome, but that all depends on what’s needed. As you now know, the microbiome and body interaction is very complex. Check out my other CE on the subject.

There is just too much info to cover all dietary considerations of each condition. I’ll stop here, with one last tidbit of advice: Whatever you do, ease into it. Gradually introduce things like fiber and probiotics into the menu. Let the resident’s gut get used to the new conditions slowly. If you need more info, here are a few sites that will get you started. You can always get more info from the doctor as well.

Doctors

Dealing with doctors and digestive system pathology can be kind of frustrating for caregivers. The doctors don’t always act the way you want them to. It helps to remember that doctors are facing the same dilemma as you are when trying to diagnosis GI problems: so many diseases with the same symptoms. The only way for the doctor to figure out what is going on is by asking a lot of questions and doing some tests. So, prepare yourself, the resident, or the resident’s family. I suggest you answer these questions before the doctor’s visit.

What symptoms is the resident experiencing?
Is there blood involved?
Is there bowel habit disruption?
When did you first begin experiencing symptoms?
Have your symptoms been continuous or off and on? Give time frames.
How severe are your symptoms? (Scale of 1–10, 10 being the worst.)
Do your symptoms affect your ability to do activities of daily living (ADLs)?
Does anything seem to improve your symptoms?
Is there anything that you've noticed that makes your symptoms worse?
What is the overall effect of the symptoms on the quality of life of the resident? (sleep disruption, low appetite, depression etc.)

Remember to follow up with the doctor, especially if there is a new diagnosis and/or new therapy. If the doctor does not hear from the patient, he will most likely assume that everything is okay. Work with the doctor in establishing a new “normal” life for the resident. Keep at it until YOU are satisfied. YOU are the in-home caregiving expert and patient advocate, not the doctor.

Interesting Fact

About 70 percent of people with Crohn’s disease eventually require surgery. Different types of procedures may be performed depending on the reason, severity of illness, and location of the disease. Approximately 30 percent of patients who have surgery for Crohn’s disease experience recurrence of their symptoms within three years and up to 60 percent will have recurrence within 10 years.

Conclusion

You are now higher on the GI tract learning curve. Hopefully your knowledge base is broad enough to handle any problem your resident’s digestive system can dish out. I can honestly say with a straight face that you as a caregiver are now better prepared to follow your gut reactions in caring for your resident’s guts.

References:

Probiotics: What You Need To Know. National Center for Complementary and Integrated Health, NIH. 2019 https://nccih.nih.gov/health/probiotics/introduction.htm

Peter Jaret. Secrets to Gas Control. WebMD. Sept. 17, 2012 https://www.webmd.com/digestive-disorders/features/secrets-gas-control#1

Food intolerance versus food allergy. American Academy of Allergy Asthma & Immunology. 2019. https://www.aaaai.org/conditions-and-treatments/library/allergy-library/food-intolerance

Anal fissure. MayoClinic. 2019. https://www.mayoclinic.org/diseases-conditions/anal-fissure/symptoms-causes/syc-20351424

Diverticulitis. MayoClinic. 2019.https://www.mayoclinic.org/diseases-conditions/diverticulitis/symptoms-causes/syc-20371758

Diverticular Disease. American Society of Colon and Rectal Surgeons. 2019. https://www.fascrs.org/patients/disease-condition/diverticular-disease

Gastroparesis. Cleveland Clinic. 07/02/2018. https://my.clevelandclinic.org/health/diseases/15522-gastroparesis

Ulcerative colitis. MayoClinic. 2019.https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326

Overview of Crohn's Disease. Crohns and Colitis Foundation. 2019. https://www.crohnscolitisfoundation.org/what-is-crohns-disease/overview

Crohn's disease. MayoClinic. 2019. https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304

Digestion: How long does it take? MayoClinic. 2019. https://www.mayoclinic.org/digestive-system/expert-answers/faq-20058340

Gut microbiota info. Gut Microbiota for Health. 2019. https://www.gutmicrobiotaforhealth.com/en/about-gut-microbiota-info/

The Brain-Gut Connection. Health. Johns Hopkins Medicine. 2019. https://www.hopkinsmedicine.org/health/wellness-and-prevention/the-brain-gut-connection

https://www.drugs.com/article/gastrointestinal-disorders.html

Gastrointestinal Disorders. Drug.com Mar 20, 2019. https://health.usnews.com/health-news/articles/2012/09/06/8-common-digestive-problems-and-how-to-end-them

GI Disorders. Internamtional Foundation of Gastrointestenal Disorders. Oct. 2 2019.https://iffgd.org/gi-disorders.html

Matthew Hoffman, MD. Picture of the Stomach. WebMD. March 07, 2018. https://www.webmd.com/digestive-disorders/picture-of-the-stomach#1

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