Right away, let me say…
You are not a bad caregiver if you can not get your person to take their meds every day!
Think about it, do you take your meds every day?
Do you take them on time, on the dot, consistently?
Most people are not perfect with this. We are human.
A system and routine we can stick to needs to be in place to be consistent with a medication schedule.
People living with dementia not wanting to take their medications is incredibly common.
Remember, your person’s brain is damaged due to the disease causing their dementia.
There are a million reasons why they may not want to take their medications.
Perhaps somewhere in their long term memory, they recall medications are meant for people who are sick. That could make them scared.
They could be irritated. They don’t want to physically swallow that pill. It could be challenging for them to remember what to physically do with the pill you are bringing to them.
What if they don’t understand what is happening? They may be worried about what those pills will do. They likely can not remember the reason they are supposed to take them.
People often become paranoid or start questioning when they can not remember the reason behind something.
That ability to connect to the “why” we are doing something, is a main reason for us all to go ahead and do the things we deep down don’t really want to do.
Personally, I prefer not to take medications as much as possible. They are a tool in the toolbox to maintain my health. I realize this. My brain is healthy.
The benefit is worth the annoyance if a medication is going to make me stay healthy longer.
I can rationalize the “why.”
Your person might be starting to lose or has lost the ability to do this mental exercise. Maybe they simply feel rushed and can not communicate this with you.
They are limitless reasons why you might struggle to get them to take their medications.
Think about why they might be refusing. Try to find the root issue.
This will likely take some time and require some trial and error.
Be patient and don’t beat yourself up.
I recommend watching this video by geropsychologist Dr. Natali Edmonds founder of Careblazers for 5 practical tips.
How to get someone with dementia to take medication – YouTube
Her YouTube channel is a wealth of knowledge. It offers practical and actionable advice for caregivers navigating the challenging behaviors common in people living with dementia.
I also recommend you have a medication review. If your person is on 5 or more medications, please do this ASAP.
Talk with a pharmacist. You’ll likely be able to speak with a pharmacist faster than your person’s doctor.
Allow me to go off on a tangent for a minute.
I’m sure you have noticed how fragmented our healthcare system is. I have so many thoughts about why this is, but that is a topic for another day.
I see the negative effects of overprescribing on seniors every day in the ER. One main reason for this is, it has become more difficult to have a “bird’s eye”, whole picture view of patients.
Think about this.
What happens as we age? Most people accumulate medical problems.
How are medical problems treated? Often with medications.
Who treats all these problems? Specialist physicians.
If your person goes to see a pulmonologist (lung doctor), nephrologist (kidney doctor), cardiologist (heart doctor), gastroenterologist (intestinal tract, liver doctor), and or a neurologist (brain doctor) AND they are ALL prescribing medications to treat their specific conditions,
Who is captaining the ship?
Ideally it should be the primary care physician.
I’ll tell you these primary care physicians, and the providers who work alongside them, are slammed. They are super busy, juggling so many things. They don’t have time to talk to your person’s five other doctors every time a medication is changed.
Those specialists are just as busy and also don’t have the time to conference each other every time there is a medication change.
I’m not saying this is best practice, but it’s reality. This is what is happening in our healthcare system.
This is where you come in.
You are the captain! You will have to speak up and be your person’s advocate.
Be your own advocate as well.
Don’t expect the doctors to talk to each other. It is highly likely not to happen unless your person is in the hospital.
Instead, when someone is prescribing a medication for your person, write down the provider’s reasoning behind prescribing it.
Why are they starting it? Is there another choice, and if so, why didn’t they choose the other choice?
What expected outcome should you look for once the medication is started? Is there any reason that you should hold it and not give it?
Make sure they understand your person’s current goals of care (GOC) so that the medication falls in line with those goals. Read more on GOC here.
I’ll let you in on another behind the scenes problem with our medical system you are likely already fully aware of.
Physicians, NPs, and PAs (healthcare professionals) are spending more time documenting on the computer than with patients and their families.
There are countless, unavoidable, external pressures on us to document so many things in your medical record. I could go off on a tangent about why this is, but I will not in this space.
Remember healthcare providers are running or working for businesses. Businesses need to be paid to keep going. Physicians, other providers, and staff who make the healthcare machine run, deserve to be compensated for their time and expertise.
The past two years have brought a lot more stress and pressures on health care workers. Just ask one of us.
The sheer volume of patients people have to see to keep their jobs, the lights on, as well as documentation requirements, and administrative work are the main “time drainers” and reasons why communication with you is decreased.
I wish it wasn’t so. I do believe it will change, but it will take time. In the meantime, you need to step up.
Back to the medication review, time to take Action!
Before you go talk to the pharmacist, write down every medication your person is prescribed and taking.
Also include the list of OTC medications, herbals, supplements, and any vitamins.
If they take something routinely or frequently write it down.
Then go to Google yourself. Look them up.
Next to every medication you listed, write down what that medication is used for in your person.
You are recording the “why.” If you don’t know, that’s ok, just make a note that you are unaware and need to be.
It is helpful to know who wrote or recommended the medication. Think nephrologist or cardiologist, neurologist versus primary care. Write this down next to each one you can.
Also, if you know, write when each of them was started. Keeping a record of the timeline can help you in the future.
Allow me to climb on my “high horse” for a moment.
As the medical decision maker for your person, it is your job to know every medication your person takes and the purpose for it.
I want you to realize you also need to do this for yourself.
We all need to take ownership of our medical conditions. One of the first steps in doing so is by knowing what medications we take and why we take them.
At the very least be able to say to anyone who asks, how many meds you take, what you take them for, and what letter they start with.
Because you are reading this blog, I think you can do better by knowing the names of the drugs you take.
It is ok if you can not pronounce the drug names. I can not say half of them correctly either, especially the new biologics.
Memorize your medication list and keep a written list in your wallet. Make sure to keep it updated.
Knowing what your person is taking daily gives you a picture of their overall health. It will help you understand their medical history and what they are at risk for in the future.
You are responsible for knowing your person’s medications as well as knowing your own. I will not hold you to memorizing all of your person’s meds, but try to. Again, you are here, so I believe you can do this.
At the least, you need to make their list and keep it updated. Most importantly, know why every medication is being taken.
Keep their medication list wherever is most convenient to you. Make sure they are both clearly labeled as to whose is whose if they are stored together.
Also keep a copy of your person’s medication list with the important paperwork you would send with them to a hospital.
If your person is in a facility where they are administered medications, the facility will have a way of keeping an updated medication list.
If they are in a facility, you still need to know why they are taking each medication.
OK, let’s return to the medication review.
Take your list to see a pharmacist. I would call where you get your person’s prescriptions filled and ask about how to set up a medication review with the pharmacist.
Could they do it over the phone? Do they have appointment scheduling available?
Be patient with them. Especially if it is a big chain store, they are super busy as well.
Just ask about the best way to do this.
Remember, if your person goes to multiple pharmacies to save money, make sure you have a complete list like we discussed above when you meet with the pharmacist.
Don’t forget any over the counter medications or supplements and vitamins.
Medicare requires a medication review annually so you can also make an appointment with your person’s primary care team for this specific reason.
I think it wise to speak with a pharmacist and then your primary care team. Here’s why.
Pharmacists are healthcare professionals. In the US, they hold doctoral degrees.
Their training is extensive and underrecognized.
Most adults in our country have contact with a pharmacy at least every few months. By not tapping into the resource that is their pharmacist they are missing out on knowledge.
Our pharmacists’ immense understanding of medications, and their effects on the human body, is an underutilized, untapped resource in our healthcare system.
They can advise on use of medications to get the maximum benefit, with as minimal side effects as possible, all while avoiding interactions.
Pharmacists have a deeper understanding of how drugs work in the human body compared to physicians.
Most physicians, myself included, have a handful of medications that we routinely prescribe and are very familiar with. We know the expected effects, risks and benefits.
Physicians also understand medication interactions and side effects, but our knowledge is not as broad or deep as that of a pharmacist.
I think you can see why consulting with someone who has a vast knowledge base of all medications would be beneficial to you and your person living with dementia.
Pharmacists are out there working hard in our hospitals, community, and retail pharmacies.
They are more accessible than physicians.
Go and ask one for help.
Questions to ask your pharmacist.
Start with a broad question.
Do you think my person needs to take all of these medications?
Listen to what they have to say. Do this especially if they are taking 5 or more medications.
Polypharmacy is a huge problem in our healthcare system. Again, part of the issue is the “bird eye’s view, whole person” problem.
When you asked this broad question, what did they say?
Did they have any concerns?
Talk about how your person is feeling. How are they acting on a day to day? How are they functioning?
Does the pharmacist think there are any potential interactions or symptoms your person is experiencing that could be in part due to the medications they take?
Medications interact with each other.
People forget over the counter, supplements, vitamins and herbs can also interact.
It is possible a person could be overmedicated or suffering from a drug reaction, and it is making their dementia symptoms worsen.
If your person is struggling to take their medications AND the medication is essential, ask if there is an available alternative delivery method of the medication.
A tablet may be able to be crushed where a capsule can not.
However, a capsule may be able to be opened and the medication sprinkled into food.
Liquids are often easier to swallow.
Ask your pharmacist other ways the medications are formulated.
Also ask about how often the medication has to be given.
Could it be given twice a day instead of three times with use of a different dose? Could an extended-release version be given if it exists for that medication?
Ask which medications are essential to life.
Do any need to be taken regularly or they won’t work and might not be worth taking?
Which are dangerous to miss taking? Could not taking a medication cause side effects you should know about?
Are there interactions happening?
Can you safely stop any of them? What about decreasing the dose first?
To be clear, do not alter the way you give or take medications from the way you are directed on a prescription unless you are directed otherwise by your healthcare professional.
Once you have this conversation with a pharmacist you will likely have a list of questions you want to ask your person’s primary care or specialist doctors.
Take your list and go talk to them about your concerns.
Ask to start working on deprescribing if that is possible, and within your person’s goals of care. What are their thoughts?
Remember medications need to be a part of planning for what is to come with dementia. We expect it will get worse.
We need to know what to do with the medications when it does.
Where is your person in the stages? How is their quality of life?
How much do they value their quality of life versus the length of their life?
The answer to these questions can help you choose medications you want to continue when you talk to their care team.
If the goal is no longer to prolong life, it can make sense to remove medications that are doing that. You’ll need to know what could potentially happen medically and have a plan for how you will act.
Your doctor may not bring up these points. If you come to them clearly knowing your person’s goals of care you will have a more valuable conversation.
Talking about medications and whether they are necessary can often spark deeper conversations. I see this happening all the time with caregivers in the ER.
I talk to them about their person’s medication list, and they ask me about my thoughts.
I always direct them back to thinking “big picture” and about overall goals of care.
Goals of care are allowed to change and adapt overtime. Medication use should as well.
For help with a medication review or a personalized consultation, I highly recommend geriatric pharmacist Dr. DeLon Canterbury CEO and founder of GeriatRX.
He uses pharmacogenetic testing as a clinical tool to help his clients. This is another topic in and of itself.
Simply stated, use of genetic testing can help prevent medication errors, risk of allergic reactions, and the trial and error common in many medication classes.
For more information about Dr. Canterbury and the work he does visit his website.
You can also watch the live conversation we had talking about deprescribing.
Remember caregiver, you are not perfect, and no one expects you to be. Medications are challenging.
I hope this helps you see things a bit more clearly.
Now please go take action.
Know your person’s medications and your own and make sure they all have a clear purpose.
Until next time.
All my best to you,
Brittany Lamb, MD