I am really excited about this topic because I remember when I first started out, I was shocked when I found out this is what happened to people with dementia who have so-called behaviors.
Communication We Don’t Particularly Enjoy
If you’ve been part of the Dementia Sherpa tribe for a while, you know that I always say “behaviors” in air quotes because “behaviors” is only another word for communication.
Often it’s communication we don’t particularly enjoy but there is always a reason for it–just like anything that we do.
When we’re communicating, you could say that we’re having behaviors, because if I walk up to you and punch you in the nose, I’m communicating something. Just like if I walk up to you and hug you, I’m communicating something there, too–just completely different.
Remember Who We Really Are
So let’s dive into this. I’ve been doing this type of work for 17 years now and I’ve worked with over 1,200 people living with dementia and their families. And yes, they’re all different types of people.
But what everybody has in common–what we all have in common–is we’re actually souls having a human experience, and that’s Who We Really Are. Often we lose track of that, and that’s something that I always try to bring to the forefront when we’re talking about dementia, is that people living with dementia have that, that essence that never goes away.
That’s their soul and so when we start from that place, then we’re able to I think have more compassion for what people are going through, how they’re experiencing dementia, and we are able to be more fully present as Who We Really Are.
I love the work that I do. It’s the best job ever. I understand people living with dementia; I feel like I really get them and that’s the reaction I get back from them, is that they know that I get them, and so now often I act as sort of a translator for their support people so that they really get them too.
My First Day As A “Professional”
But it wasn’t always that way.
My first day as a professional, I thought it was going to be like when I was kid and my mom took me to work with her. She worked in a nursing home with lots of people living with dementia, and I had really good experiences there as a kid growing up, so I thought all this is going to be easy-peasy-lemon-squeezy.
What actually happened on my very first day as a so-called professional is that by mid-morning, I was publicly ridiculed not only by my co-workers but also by a resident.
By late morning, I’d been punched in the jaw and knocked on my butt.
And by late afternoon, this really sweet lady needed help, and I didn’t know how to help her. So I had that “Oh, $%^#!” feeling in the pit of my stomach. I hate that “Oh, $%^#!” feeling of knowing that people need help and not being able to help them.
Because I didn’t know what I was doing, because nobody had ever given me a “Do this” or “Don’t do that!” cheat sheet, I did everything wrong and I turned that really sweet energy into the scary thing from It.
By the end of my first day, I was a hot mess. When I’m giving a live talk, that’s usually where my first-day-as-a-professional story stops, right there. That’s the part I cover, and then we launch into something else.
I don’t usually talk about this next part, at least not in relation to my first day story.
This Is What Happens to People with Dementia with “Behaviors”
But this next part is actually the most important part of the story of my first day. It gets directly to what I mean when I say I was shocked when I found out this happens people living with dementia with “behaviors.”
For as crappy as I thought my first day was, it was much worse–obviously!–for the people that I was supposed to be helping.
Not only because I didn’t help them, not only because I didn’t meet their needs, but because back in those days (17 years ago), the common reaction to things like those “behaviors” was people got put on antipsychotic medications.
So that was their experience of my first day: people got put on unnecessary medications that increased their risk of death, all for trying to communicate.
When I was publicly ridiculed? That happened when Ethel, who hadn’t spoken in quite some time, experienced the miracle of speech and loudly commented on the size of my behind. The incident was listed in the behavior monitor as her being “disruptive,” the justification for her being on an antipsychotic medication.
The guy who hit me? Listed in the behavior monitor and used as justification for him being on an antipsychotic.
And the lady that I couldn’t help because I didn’t know what I was doing? She ultimately burst into tears and got really upset. She was pacing and rubbing her hands together, so that was documented in the behavior monitor and she got medicated, too.
All because I didn’t know what I was doing. I didn’t know what I was doing because nobody trained me. Nobody told me “do this” or “don’t do that.” It wasn’t that I didn’t want to help; I absolutely did.
What It’s Like to Have Dementia
It’s important to understand where a person living with dementia is coming from.
A lot of times we hear the word “dementia” and we think “memory loss,” which is definitely part of it but it’s so much more than that. When you have dementia, your brain is under attack and this thing that’s supposed to be helping you is actually attacking.
It’s exhausting. It takes all of your energy to try to figure out what’s going on in the environment around you, what other people are trying to communicate to you, and expect of you, what you’re supposed to do in reaction to other people, and how you’re supposed to be able to get your needs met when you’re not sure how to do that yourself.
The underlying message is always just, “Please, please help me!” You’re begging for that, just trying to get the help you need. When people around you don’t understand–as I didn’t on my first day–what it is that you’re trying to communicate to them, you try charades, right?
You’re thinking, If they can’t understand what I’m saying, if they’re thinking the things coming out of my mouth are just nonsense or gobbledygook, then I’ll show them what I mean. I’ll act it out. That’ll get their attention. I’ll try charades.
And what happens, unfortunately, still to this day and all too often, is that you wake up on drugs that make it even more difficult to communicate. So whatever the unmet need was, whatever the underlying problem was, it still exists but now you really, really can’t communicate.
It’s absolutely awful for people living with dementia if they’re around people who don’t understand them and what’s happening in their brain.
“This Is An Easy Fix”
Often what happens is the staff in the nursing home or in assisted living or memory care sell you this vision of, “We have a medication that will fix this [insert “behavior”] and everything’s going to be fine so we’re gonna put them on this medication, it will resolve this problem of verbal outbursts (or hitting, striking out, kicking, punching, spitting, crying, tearfulness, agitation, pacing, hand-wringing, grimacing….),” and it sounds like a great idea.
“This is an easy fix, let’s go ahead and do that,” you may think. Unfortunately, the reality looks quite a bit different than the vision that you’ve just been sold. Significantly different.
Talking about antipsychotics gets a little bit geek-speaky–not because I’m trying to go there; I tried to make this very clear to understand–but it it can get a little complicated because some of the words sound like some of the other words that have different meanings.
Why Using Antipsychotics Is A Bad Idea
Antipsychotic medications are not dementia medications. Those are two different things. Often families of people living with dementia are told that antipsychotic medications are dementia medications, and they are not. The FDA says they are not. They were invented to help people living with schizophrenia and bipolar affective disorder; not for dementia.
Antipsychotic medications are anticholinergic medication, which block the neurotransmitter acetylcholine. Acetylcholine is essential for processing memory and learning, so we would want acetylcholine, right? We definitely want that, but antipsychotics block that. You can see where that’s a problem.
Acetylcholine is broken down by the enzyme acetylcholinesterase and what happens in dementia medications is acetylcholinesterase inhibitors impede the breakdown, which is what we want. These medications include medications you’ve probably heard of: Aricept (donepezil); Razayne (galantamine); and Exelon (rivastigmine).
There’s also Namenda (menantime), but that is in a different class all together. It works differently in the brain, and it’s not bad but just something we’re not going to cover in this post.
These are dementia-specific medications. They were FDA-approved specifically for dementia to make sure that the acetylcholine is protected.
Anticholinergic medications come in different classes and those classes are things like antipsychotics, which we just covered above, hypnotics (often called “sleepers”), and antidepressants. Not all antidepressants are anticholinergics, though.
The great Maya Angelou said, “When we know, we do better.” If we didn’t know any of this information, there’s no way we could do anything with it; we couldn’t possibly do better. But now we know, so we can definitely do better! We can do that by asking some questions like “What?”, “Why?”, and, “How?”
“But The Doctor Said…”
But first, for those who may be thinking, “I’m sure that it’s totally fine ’cause the doctor said…” and, “The doctor told me the Risperdal was for helping him sleep (or to help him calm down),” here’s a story from when I was a memory care director.
We did a 50% reduction in antipsychotics usage. Some common antipsychotics you may have heard of are Seroquel (quetiapine), Geodon (ziprasidone), Abilify (aripiprazole), and Risperdal (risperidone).
The result? All of the things that we didn’t want to see–things like so-called behaviors: altercations between people people; hitting; kicking; biting; scratching; punching; name-calling; tearfulness; crying; agitation; rubbing hands together; pacing–all of those things went down.
People falling went down, people being kind of out of it went down, people sleeping too much went down. What went up were more people coming to programs that we were offering throughout the day. More people being really engaged in the programs we were offering. Appetite went up. Ability to walk went up. Oh, and incontinence went down.
Everything we wanted to go up did, and everything we wanted less of went down. Our team won an American Healthcare Association National Quality Award at the bronze level, which was huge. That gave us an idea we were definitely on the right track.
We thought if a 50% reduction was good, let’s try some more. So we did more. We did an additional 25% reduction, and that increased all of our good results. We went on to win an American Healthcare Association Gold Award.
So if you’re skeptical, stick with me because this is proven.
5 Good Questions
Here are 5 good questions to ask if the doctor is recommending or charge nurse or someone in the care community is telling you, “We called the doctor because we think that some Seroquel would help.”
1. “Why does my person need to take this medication?”
Have them get very specific with you. Not just “for behaviors.” Okay, well what kind of behaviors? They’re agitated? Okay, well what are they doing to show their agitation?
Agitation is a very broad, vague term. I could hit someone and you can say I was agitated. You can bite someone and we could say you were agitated. But what if I’m hitting someone because they’re trying to pull my shirt over my head and don’t know about my shoulder injury that I’ve had for 20 years and it’s causing me pain?
What if you’re biting someone because you’re perceiving a threat? Is that because you can’t see very well? You didn’t understand what was happening? Did they have a bad approach? Different things can be going on with different root causes. So in answering “Why does my person need to take this medication?” make them get very specific with you.
What’s going on that now they need to take this medication whereas before they didn’t?
3. “Why this particular medication?”
What is it about this medication that makes you think my person needs to take it? Again, get very specific. Make care providers get very specific with you.
4.“Why not a different medication?”
Why are they recommending this one? Why wouldn’t a different one work? Really make them think about it. Because too often–and this is true cross the board, probably, of any profession–people do things because “that’s the way we’ve always done it.” We can get into that little trap of not really being very present with what’s going on right now with a specific situation or specific person and just fall into that trap. Just because we’ve always done it that way doesn’t mean it’s the right way to do something.
5. Why haven’t non-medication interventions worked?”
This is one that I would encourage you to really press the point on. If the provider is blowing you off, or even if you’re satisfied with answers 1 through 4, why haven’t non-medication interventions worked? Make them explain it to you. Make them justify it to you.
Again, the FDA says these medications are not safe for people living with dementia. They issued what’s called a “black box warning.” That’s the strongest warning that the FDA can issue about a medication. Antipsychotics have a double black box warning.
They are absolutely not recommended for people living with dementia and they’re not recommended for people over the age of 65. This is really important information to know and really important that you feel empowered to press the point with people who are telling you that it actually is a good idea. Make them justify it.
In the next post, we’ll look at non-medication interventions.