I will discuss 3 of the most common classes of medications used in response to dementia related behaviors.
Be aware there are additional classes of medications I am not going to cover.
Before we get started, there are some things I want to make clear.
1 – This is not medical advice for you or your person.
2 – Do not make any change in your person’s medications based on what I say here.
3 – Any decision about medications needs to consider your person as an individual and should be discussed with their treatment team. (This includes use of over the counter medications, supplements, CBD, and medical marijuana.)
4 – Starting a new medication needs to weigh the risks and the benefits to the person. The team should consider their age, weight, and their entire medical history as part of assessing their risk vs benefit.
5 – Asking about medications to consider for your person on Facebook, or other social media platforms, doesn’t consider your person as an individual.
I see the benefits in people sharing their experiences.
However, keep in mind when you read other people’s responses you only are hearing a tiny sliver of their person’s story.
Something that is reasonable and safe for their person might be harmful or serve no purpose to yours or vice versa.
6 – Pharmacists are a wealth of information.
Their expertise is undervalued and underutilized. They are the experts when it comes to medications and they are easily accessible compared to physicians. Please ask them medication questions in addition to asking your person’s doctor.
Now that I’ve gotten those housekeeping points out of the way, let’s move on.
When I say “behaviors” what do I mean?
I’m referring to things the person living with dementia says or does that are concerning to their care partners and could lead to a search for a medication to help.
Severe anxiety, panic, pacing, wandering, trying to “get away”, anger, paranoia, hallucinations, scratching or picking of their skin, extreme disturbances in sleep, agitation, and aggressiveness both physically and verbally are all examples.
Leave a comment below if your person has been on medications to try and help with something distressing to them or to you. What symptoms were being treated?
There is a medical term used to categorize these extremely common dementia related symptoms or “behaviors,” neuropsychiatric symptoms.
There are a few principles I want to discuss before we get into each medication class I will be discussing in this post.
One thing we need to be clear on…
If a “behavior” is completely out of character for your person, you’ve never seen it before, or it has seemingly come out of nowhere, I need you to stop and think for a moment.
I want you to always first consider that there might be a medical issue happening.
There might be something causing this change in your person which could be clearly identified and addressed.
Some of the common causes of an all of a sudden change in a person’s behavior are: infection, pain, constipation, difficulty urinating, a medication side effect, or any new medical issue.
What you do to figure out which one of these it might be is outside the scope of this article, but the above list are a few things you want to consider.
If you have a concern that your person has a medical issue happening, what you do next depends on their goals of care.
You will likely reach out for help to their medical care team. I don’t want you to be surprised if you wind up in the ER.
Keep in mind 911 and the ER are there for a reason.
If you are at risk of harm from your person or they are at risk of harming themselves please seek help.
Coming to the ER for an all of a sudden change in behavior, especially worsening confusion, is one of the top reasons I see patients who are living with dementia when I am at work.
I want you to consider this situation separately from what we are discussing here further.
If a “behavior” has been happening for a while, so much so that you are considering a medication to potentially help it, that is the type of “behavior” I am referring to in this post.
Many dementia experts believe and teach that these “behaviors” are due in part to an unmet need.
I share the same belief. This is why I place the word behavior in quotes.
What is causing these “behaviors?”
Remember your brain is an amazing organ. Think of it as a computer controlling all of the functions of your body.
It brings in information, processes it, then signals an appropriate response.
People living with dementia have a disease causing progressive deterioration in their brain.
Your person’s ability to function, the way they communicate, their behavior, everything you can see and notice about them can be affected by how much disease there is and in what regions of the brain it is located.
We may speak too fast or for too long. If the “taking in” information role of the brain is affected the person may not understand what we are asking or saying to them.
If the person’s sense of time is affected, our conversation or questions of them would be more confusing. This is just one example of why processing information can be challenging.
Even if they understand what we are asking, they may struggle to express how they are feeling. Signaling out a response may not be working for them like it used to.
There is also the emotional side of things.
Not being able to take in or process what is happening in any given moment can trigger feelings of fear or sadness, made worse if there is an issue communicating how that makes them feel or ways it could be improved.
Imagine yourself in a situation where you felt uncomfortable and were not able to express how you felt or tell the people around you what might help you feel better. What if you couldn’t figure out what was going on?
Clearly this would be distressing to any of us.
I believe the outward problem “behaviors” we see are often due to this internal struggle the person is dealing with. Whenever possible, medications should not be used first line to address these situations.
There is no FDA approved medication for treating dementia related “behaviors.”
Knowing medications are not first line, how can you avoid their use?
For one, it is wise to keep track of patterns you see in their behavior.
Is there a time of day when things change for them? Is there something happening in their environment that seems to trigger a change?
You will want to be curious and track their trends. This can help you avoid dangerous situations with escalating distress for the person.
Use whatever tool is helpful for you to record things. Your phone, a notepad, a journal. Whatever works for you.
If you notice a trend you can try to intervene and try to prevent the “behavior” from happening or not becoming as severe. It will likely require some trial and error.
You will need to learn methods for handling your response to these behaviors as well.
How we respond to the person can make a world of difference in what happens next.
Most of us are not born knowing how to handle these types of situations, we learn through necessity, our experiences, and trial and error.
What is wonderful about how we live today, is the power of the internet to bring people right into your world who can teach you.
You do not have to figure everything out on your own. Learn from the people who have done this before you. There are experts who teach this as part of how they make their living in this world.
You can absolutely learn strategies to prevent problem “behaviors” and de-escalate and avoid distress to you and your person when they do happen.
Who do I recommend you look to to help you learn about ways you can become educated in some of these strategies?
At the end of this post I will tell you how to receive my recommendations for people I know who can help. There are many out there doing this work.
Find someone who you like to listen to. If you like their style, follow them.
Learn all you can. You don’t know what you don’t know. Be a sponge.
After becoming educated about ways to de-escalate the situations which come up for your person, practice and trial run the strategies you have learned.
If there isn’t much success, and your person’s quality of life is being impacted negatively, then it may be time to consider medications.
Keep using trial and error strategies even if medications are started. It may be a combination of things that help the best. You won’t know until you try.
Ok now let’s talk about 3 classes of medications commonly used.
Remember this is general information. Some or all of these medications may harm or not offer your person any benefit.
Your person’s team may also have no issue prescribing one of these types of medications for your person because of what is going on with them as an individual.
Also I want you to keep in mind, there are additional medications that fall outside of these classes which might be helpful for your person.
Antiepileptic or antiseizure medications are one such class.
Some medications such as Valproic acid- Depakote and Lamotrigine Trileptal fall under this category. They are commonly used as mood stabilizers for people with bipolar disorder and depression.
They are also used for mood stability in people living with dementia.
Don’t be caught off guard if there is a medication recommended for your person that I don’t list here. There are many!
The first class of medications to discuss are the antipsychotics.
There are atypical and typical antipsychotics. We don’t need to get into that here, but in case you read those terms you’ll know they do exist.
This is a list of commonly used antipsychotic medications (generic – brand name).
Haloperidol – Haldol – Not used commonly as a daily prescription. Typically used in healthcare settings as an “as needed” medication.
Risperidone – Risperal
Aripiprazole – Abilify
Olanzapine – Zyprexa
Quietapine – Seroquel
Antipsychotics were developed to treat people living with schizophrenia.
What is their main use in those living with dementia?
Antipsychotics are used to treat the symptoms of psychosis in those living with dementia.
What is psychosis?
Simply, it means someone is having an issue telling the difference between what is real and what is not.
Delusions (false beliefs) and hallucinations are symptoms of psychosis.
Agitation, aggression, and paranoia are some of the symptoms we can recognize outwardly which might make us concerned someone is out of touch with reality and having internal symptoms of psychosis.
Antipsychotic medications might decrease the severity of the internal symptoms of delusions and hallucinations.
This could make it so the outward signs seem to happen less often or are not as severe.
Do not expect that these medications will make internal symptoms or the outward signs of them go away completely.
Be aware antipsychotics do carry a black box warning by the FDA.
The Food and Drug Administration (FDA) here in the US issues a “black box warning” when there is a potential for a serious or life-threatening outcome when someone takes a medication.
The warning is meant to draw attention to the potential risk. It’s another way to make sure risks versus benefits are being considered.
The warning is written and put in a black box on the drug information sheet and sometimes on the prescription bottle itself.
In the case of antipsychotics, there is evidence from clinical trials that there is a higher risk of death for those who are elderly and being treated for dementia related psychosis.
Here is a short, well sourced article on commonly prescribed antipsychotics for dementia which includes the full language in the black box warning.
As mentioned inside the FDA issued warning, 17 trials were analyzed which were on average 10 weeks long.
Overall, people living with dementia being treated for dementia related psychosis with antipsychotic medications showed a risk of death 1.6-1.7 times the risk of death in placebo treated patients.
Drug treated patients’ rate of death was about 4.5% compared to 2.6% in placebo.
You can also find information about this class of medication and its warnings via the Centers for Medicare & Medicaid Services here.
What does a black box warning mean for practical use?
A black box warning does not mean a drug can not be used.
What it means for your person is, like everything we do in medicine, the risks need to be considered for your person as an individual.
The prescribing healthcare provider and the pharmacist dispensing the medication should be helping you do this.
Long term use must be worth the risk to the person and should be reassessed and monitored.
Anytime an antipsychotic medication is used it should be done only to try and improve the person’s quality of life.
In the ER and the hospital, we reach for these medications when we can not calm someone by changing their environment, treating pain, or addressing other possible triggers of their agitation.
When I use antipsychotics in the ER it is when my patients are agitated and have become physically aggressive at risk of harming staff and themselves. I use low doses of medications.
What are some other risks of antipsychotics?
They cause sedation and often work quickly to do so. This could be viewed as a benefit in some situations, but the risk of oversedation is something to consider.
Sedation will increase the person’s risk of falling.
Another thing to consider is whether the person is taking additional medications which work in the brain.
If they are on multiple medications which carry the possibility of sedation, this will need to be carefully considered.
Antipsychotics when used long term or in too high of doses can cause worsening brain function, also called cognitive functioning.
Regular use of these medications can contribute to someone becoming more withdrawn and less interactive in the world.
It is important to review and reassess to make sure these medications are still providing benefit to someone if they are prescribed them daily.
Another important risk you should know about are the motor side effects they can cause.
Some are more likely than others to cause what are called extrapyramidal symptoms, making muscle coordination more difficult.
Sometimes stiffness is seen in muscles. Repetitive involuntary muscle movements and a disorder called tardive dyskinesia is a potential. Tardive dyskinesia has a spectrum of severity, the symptoms are treatable, and often improve with dose lowering or stopping the medication. For some, especially those who have been on these medications for months to years, the symptoms, while treatable, can become permanent.
In people living with Parkinson’s dementia (PD) or Lewy Body dementia (LBD) extra care is needed when assessing these medications because many of these patients already have muscle and motor issues.
Be sure to ask questions about what your person is being prescribed to calm them if in the ER or the hospital if that happens and your person has PD or LBD.
Seroquel is thought to be safer in these patients overall.
The second class of medications are benzodiazepines. I’ll call them “benzos” to save myself some typing.
Here are some commonly used names of benzos (generic – brand name).
Lorazepam – Ativan
Alprazolam – Xanax
Clonazepam – Klonopin
Diazepam – Valium
These medications were originally designed as sedatives.
Pharmacists, geriatricians, and hopefully physicians everywhere are cringing at this medication class being mentioned for use in people who have dementia and are aging.
They are on something called the “Beers” list which you should know exists. Antipsychotics are also on the Beers list.
The list was last updated, from what I could find, in 2019.
If you are interested in looking at the list, here’s a link from the American Geriatrics Society to a Pocket Guide with the 2019 Beers Criteria.
Please be aware this is meant for healthcare providers and is to be used as a tool to help improve medication safety in people who are aging.
It does not tell anyone what to do, but is meant to help us consider risks when prescribing.
Do not be surprised if your person is taking one of the medications listed here. Do not stop your person’s medication because it is listed.
If you have questions about your person’s medications, ask their pharmacist and the person who prescribed it.
Back to the Benzos…
There is a time and a place for the use of medications for all of us.
I do not advocate for long term use of benzos in anyone, especially not people who are aging.
Reaching for these medications first for my patients in the ER is not something I do if I can use something else which is safer and at least as likely to help them.
Writing prescriptions for these medications for any of my patients, especially those who are aging is also something I rarely do.
Unfortunately many people have already been prescribed these medications for years before I talk to them about their risk in the ER. Sometimes long term use of them is why the person is there in the first place.
Why are people prescribed benzodiazepines?
I have found patients often prefer medications they can take as needed when they are feeling anxious rather than a daily medication needed to decrease overall feelings of anxiety.
They are not meant to be used as first line treatment for anxiety, but they often are.
When someone is anxious it is best to try and figure out why and intervene to fix the trigger or prevent it when we are able to.
Benzos are also commonly prescribed to help with sleep. I do not think this is the best or even a good option, especially in long term use. However, this is an individual decision.
One thing they are appropriately prescribed for is panic.
I will be the first to tell you, benzos work incredibly well when people are panicking.
When someone is in full blown panic breathing 40 times a minute, hyperventilating I find these medications incredibly useful in the ER.
Sometimes a severe medical issue can cause a person to panic, understandably.
I have been able to save too many people to count from being intubated and put on a ventilator by using a small dose and short acting form of these medications.
It makes sense to use them situationally for panic. Long term use should be worth the long term risk to the person.
How do benzodiazepines work?
They are sedating and act in the brain on a receptor called GABA. Think of this receptor in the brain as one that promotes calming.
The same receptor is activated by alcohol in the brain.
You know how addictive alcohol can be for people.
Benzos have the same issue. People easily become tolerant to them. Meaning they stop having the same effect with regular use of the same dose.
People may reach for higher doses to achieve the effect they are used to.
People also develop a physical dependence on them with long term use.
What can happen if someone stops taking benzodiazepines after long term use?
Their brain is no longer receiving the stimulus for calm which can lead to unchecked excitatory activity in the brain.
Stopping alcohol and use of benzos after long term daily use (typically weeks to months) will cause someone to have overstimulation in the brain. When severe this can cause seizures and death.
Thus alcohol and benzodiazepines are two commonly used classes of drugs that can be life threatening when someone abruptly stops their use.
We treat alcohol withdrawal with benzodiazepines in most cases.
In comparison to alcohol and benzos, one could argue narcotic pain medications (ex: fentanyl, morphine, oxycodone/percocet, & hydrocodone/norco) or use of heroin have even more unpleasant symptoms in withdrawal, (part of the reason we have an opioid crisis in the US), but withdrawal from them is not directly life threatening.
Benzos can not be stopped abruptly after long term use and will require a tapering off.
There are a few other things you should know about these medications.
There are short acting and longer acting forms.
From shortest to longest acting of the drugs I mentioned above:
Alprazolam, lorazepam, clonazepam, and valium.
You should be aware, people who are aging take more time to process and metabolize the longer acting benzodiazepines.
What are other risks of benzodiazepines?
I’ve already discussed the risk of tolerance and dependence, thus there are risks of addiction and withdrawal.
Benzodiazepines are more dangerous for people who are aging, hence being included on the Beer’s List.
Because they are sedating they increase risk of confusion, delirium, and falling.
They could worsen cognitive functioning if used long term.
In combination with other drugs they are also more risky.
Especially combination of benzos with alcohol and/or narcotic/opioid pain medications.
The combination of any of these drugs increases the risk of low blood pressure (thus less blood flow to the heart, kidneys, brain) and decreased breathing rates.
When people are more sedated they are not only at risk of falling, but they are also more likely to aspirate.
There is a lot of potential harm from this class of medications.
For someone living with dementia I tend not to reach for them when someone is agitated or delirious and use them when it is more clear the person is suffering from panicking.
I also commonly use them to treat seizures and alcohol withdrawal.
Analyzing risk vs benefit is beyond important when considering a benzodiazepine for your person especially when use might be long term.
Onto the third class.
The last class of medications I want to discuss are the antidepressants.
There are a lot of medications that fall into this category.
There are also classes within this overall class. I’m not going to go into that today.
There is a lot of research and drug development ongoing with these medications because there is clearly a need for them as a tool in helping people treat chronic anxiety and depression.
You should be aware that the various medications have an effect on different neurotransmitters in the brain namely dopamine, serotonin and norepinephrine.
It is fascinating science (at least to me). Psychology was my major, but it would have been neuroscience if that was an option at the time.
Side note, if you want to deep dive into neurotransmitters and how they affect and regulate our mood, I recommend you follow Andrew Huberman a neuroscientist out of Stanford as one source of learning.
Here is a list of commonly prescribed antidepressants:
Citalopram – Celexa
Escitalopram – Lexapro
Sertraline – Zoloft
Venlafaxine – Effexor
Duloxetine – Cymbalta
Bupropion – Wellbutrin
Mirtazepine – Remeron
Trazadone – Desyrel
These medications are designed to be taken daily. They are not for “as needed” use.
I have found they are frustrating for patients and their families. Why?
Having time to evaluate for an effect is essential in this class of medications.
It can take weeks, 4 to 8 in some cases, to really notice an effect.
Thus they are not good medications for a person living with dementia when a behavior is dangerous and needs to be treated with medication right now.
They will not help with all of the sudden panic or anxiety.
What can they help with?
This class of medications can be used to treat and improve or decrease underlying depression or anxiety symptoms in the person living with dementia as a tool to try and help with “behaviors.”
I’m not going to do a deep dive of side effects here because they are variable depending on the medication.
Nausea is common especially with dose increases.
Some of them can be a bit stimulating.
Especially those that focus on increasing serotonin. If that is an issue your person is already having you’ll want to let their prescriber know because insomnia and agitation could become more frequent.
There are also some that can cause sedation, trazodone being one of those.
The prescriber obviously will need to look at all of their medications, but if sedation or drowsiness and increased sleeping is one of their symptoms of depression, increasing sedation with medications may not be beneficial to them.
I do want you to know there is genetic testing that can be done to help a prescriber consider medications which may be more beneficial to someone.
It’s called pharmacogenetic testing. Know it exists.
If your person is in the early to middle stages of disease it could help you and their prescriber decrease the number of medications, especially antidepressants you have to try.
OK we covered a lot of information. What do I want you to take away from this?
Here are some general guidelines to follow.
1 – Do not use medications unless they are likely to improve the person’s quality of life and are worth the risk vs benefit.
2 – Use medications to help with a specific symptom or symptoms.
3 – If a medication is decided to be worth the potential risks, advocate for a low starting dose, use of one medication at a time.
Consider if the medication was given long enough to see if there was a response before giving up on it.
Ask about if a dose change is possible before switching medications.
4 – Try to avoid the use of benzodiazepines whenever possible.
Make sure you keep track of every medication your person is on so drug-drug interactions can easily be checked for.
5 – As the symptoms of dementia progress, ask if coming off medications, or decreasing their dose is possible.
Continue to monitor to deprescribe whenever possible.
6 – Don’t forget your pharmacist as a resource for you and your person.
7 – Remember, you have power in how you speak and react to your person in these situations. It’s all about trial and error and self education.
Even if your person has not had many issues with “behaviors” you should learn about ways you can intervene without the use of medications.
Ask about and be an advocate for staff training if your person is living in a facility.
OK, one last thing before you go.
I told you I would give you a list of resources.
I share this list, helpful tips, the schedule for what I have going on inside the Facebook community, and other behind the scenes information with people who are on my email list.
They also receive links to my latest blog posts as part of how I connect with them.
If you would like to be included, sign up here.
In the first email you receive I will share with you a few of the people I recommend to help guide you through all things dementia related “behaviors.”
Learn from experts so you’ll have tools to use to avoid medications whenever possible.
Please send me your questions via email or post them here in the comments.
That’s it for today.
Until next time, all my best to you,
Brittany Lamb, MD