A change in the way the person is acting or behaving is one of the most common reasons a person living with dementia will be seen in the ER.
This often looks like increased confusion, agitation, or the person speaking less and being more withdrawn than usual.
We call this a change in mental status, “altered mental status,” or you may also see the term “acute encephalopathy.”
To be clear, this is not worsening dementia. That typically happens more gradually.
I’m talking about a sudden change in the person. There is a spectrum in how severe this can become.
When a change in mental status or the way someone is acting is severe, is starting to affect the person’s level of consciousness or attention, it is labeled as “delirium.”
I plan to do a post on delirium for you, so I am not going to go into details here.
I do want you to recognize the term “delirium” and know that it means a serious change in someone’s mental abilities and can be life threatening if the symptoms or root cause go untreated.
Some people do not recover their mental abilities after having delirium which can mean permanent worsening of their dementia symptoms.
Be aware that a new medical problem is often the reason for a quick change in mental status.
I want you to know there is a huge list of reasons why someone could have a change in mental status.
Too many to teach you about here.
I teach the most common conditions causing mental status changes inside my course which I will tell you more about at the end of this post.
Despite what you might read inside online support groups, this change is not always due to a urinary tract infection (UTI).
People will say check them for UTI. They are not wrong, but it is way more complicated than that.
When your person has a change in the way they are acting, you will need a strategy. Acting quickly to troubleshoot could help you prevent delirium.
Try the following 6 step process.
It’s not all inclusive, but hits some of the most common things to consider.
Step 1 – First consider pain.
Pain anywhere, even pain which would be minor to you could provoke a change in mental status.
Consider joint pain, back pain, and headaches.
Any place you can have pain, so can your person.
History repeats itself. Think about where they have had pain in the past.
Learn to interpret your person’s nonverbal cues.
What do they do when they are in pain? What does their face look like?
You and your family know your person better than anyone who will try to diagnose what is going on.
Step 2 – Constipation has its own step in the process. It is that common.
Think back to the last time you did not have a bowel movement for a couple of days. It is uncomfortable and sometimes it really hurts.
In medicine, constipation is well known to be a mimicker of appendicitis.
I’ve seen plenty of people in the ER who thought they had something life threatening happening inside their belly, only to find out they were constipated.
Step 3 – On a somewhat similar note, make sure your person is able to urinate.
Not being able to relieve your bladder becomes extremely uncomfortable.
This issue is more common in men thanks to the prostate gland.
I once had a man grab my arm and tell me to kill him because he hurt so bad.
Instead, a member of our team placed a foley catheter and decompressed his bladder.
He hugged me afterwards. He should have hugged his nurse.
When there is a change in your person, you are first thinking about what could be happening inside their body which could be causing this issue.
Pain, constipation, and difficulty urinating are common triggers for confusion that fit under this category.
Then I want you to consider,
Step 4 – Is there a new medical problem happening?
Any new medical issue, life threatening or not, can cause a change in your person.
The more severe and the longer the root cause goes undetected and untreated the more likely the person is to become delirious.
Keep in mind, the same medical emergencies you have had, so can your person.
Modules 5, 6, and 7 of my course are all about medical issues common to dementia and aging.
For example, as we age we become more at risk for stroke, “heart attacks”, abnormal heart rhythms, and failure of our organs (lung, heart, liver, kidney). These are a few of the conditions I break down inside Module 6.
We are all at risk of developing medical conditions simply from aging, but your person’s past medical history can also help you see what new issues might happen to them in the future.
When your person is confused or acting differently, think about the medical issues they have had before, what they are at risk for, and consider if there could be something new happening.
Considering if a new infection is happening is a HUGE category to consider underneath step 4.
This is where thinking about a UTI (urinary tract infection) falls into this process.
Are they having symptoms of an infection you can notice or see?
Could those symptoms point you to the source or what is causing the infection?
I will teach you common symptoms of infections, conditions, and injuries and how they can look different for people living with dementia in my course.
What we have been discussing in Steps 1-4 are causes of a change in behavior due to something happening inside the person.
Next, I want you to think, what could be happening TO them?
What is coming from something outside their body and could be causing this change in the way they are acting?
Step 5 – Consider, what medications are they taking?
Are they taking them correctly? Is the dose too high? Are they causing side effects?
Blood pressure medications are common culprits for this. Especially if the person is erring on the side of being dehydrated.
Could there be medication interactions?
If you need a quick question answered about a medication, you can probably reach a pharmacist faster than a physician.
Are they taking pain medications? (Percocet, oxycodone, Norco, Tramadol etc)
What about over the counter medications? (Tylenol PM, benadryl, sleep aids etc.)
Do not forget about alcohol. Could they be drinking too much alcohol?
Step 6 – Lastly, consider their environment.
This is where your investigative skills are really needed. Medical professionals are not likely to be as helpful with this.
Are they too hot or cold?
Could they be bored, hungry, or thirsty?
Is it too noisy? Overstimulation can cause a change in mental status.
What time of day is this happening? Do they need to rest?
Is there something that is preventing them from getting decent sleep?
If thought about and addressed quickly you can prevent worsening confusion, anxiety or agitation.
We all need a troubleshooting process to fall back on when this happens.
None of us are born knowing the best way to care for and respond to a person living with dementia.
Use a process, like this one I have laid out for you.
Go through the 6 Steps and think them through.
If you find a pattern in your person’s behavior, you just may have found a cause you can act on or prevent from happening in the future.
Determining what has caused or what could be contributing to your person’s change in behavior or overall worsening confusion is not always easy, but
you know your person better than any medical professional.
You will interpret their feelings and needs better than we will.
I hope after reading this you realize there is a lot you could learn about ahead of time.
Knowledge is out there to “have in your back pocket” to help you make decisions when your person has a change in their mental status.
Do you want to learn the specifics of how we (medical professionals like me) diagnose and treat injuries and the medical conditions that can cause confusion in your person?
I want to help you learn what your person is at risk for due to having a diagnosis of dementia and because they are a human being who is aging.
I created an online course to give you access to all of this information before you will need it.
Click here to learn about “Make Your Plan with Dr. Lamb”
It is a self-paced program. You do it on your own time.
For each condition I break down the decisions you will have to make, the treatment options from most to least aggressive, things to consider ahead of time, and give you questions you should ask your person’s care team in real time.
After 8 weeks, you will have an organized “medical decision” plan specific to your person.
This document will be your go to reference point when you have to make a medical decision on behalf of your person. I’ll teach you how to adapt it overtime so you can use it now and into the future.
The videos for each condition are short with as little medical jargon as possible. Almost all of them are less than 10 minutes long.
As long as this course exists, you will have lifetime access to it.
This means if something happens to your person, you will be able to log back in and re-watch the video on that topic to refresh your mind.
You will learn a process for making any medical decision, how to determine your person’s goals of care, when their goals and decision plan might need to change, and the tools you can use to advocate for them on a practical level.
The course is for you if you are….
- A child of someone living with dementia. Become informed and better able to advocate for your parent(s). It is not too soon and you are not overstepping. This is something you can do right now, ahead of a crisis to help out. Learn on their behalf so you can be prepared to help them make decisions.
- The partner of your person. You can feel confident and at peace knowing you are making medical decisions which line up with what your partner would want.
- Part of a team of family decision makers. This is how you can pitch in to help your family. (I offer a way for families to plan together inside the course, just reach out and ask me about it.)
If it feels like you are just waiting for something to happen, now is the time to jump in and learn.
Medical professionals in offices, the ER, and the hospital want you to have this information, but do not have the time to teach it to you.
This is a course geared toward decision making in dementia, but the person living with dementia is at risk of all the same medical issues as anyone else who is aging.
Unless you are a physician, PA, or NP practicing in the ER, ICU or hospital, I know I will teach you things you didn’t know about common medical emergencies you or another family member might be at risk for now or in the future.
Click here to read more about the course and see what’s inside.
As always, please let me know if you have questions about what I do or what I wrote here today.
The best way to contact me is to sign up to receive my weekly emails where I share tips, free video trainings, and resources. You can hit reply anytime and ask me questions. Click here to sign up.
Until next time, all my best to you and your family,
Brittany Lamb, MD