Medication management for people with Down syndrome

Why is medication management especially important for patients with Down syndrome?

According to the Journal of the American Medical Association, people with Down syndrome are about 12 times more likely to die from an infectious disease. Because people with Down syndrome are born with impaired immune function, their immune systems are weaker overall, which makes them more likely to get sick. They’re also more prone to certain medical conditions, such as heart disease, respiratory infections, and Alzheimer’s disease. In fact, an estimated 50% of people with Down syndrome will develop Alzheimer’s as they age. For these reasons, staying on top of medication management is especially important for people with Down syndrome and their caregivers. 

Because they may metabolize or process drugs differently, people with Down syndrome can be highly sensitive to medications. It’s very important to monitor and watch for side effects when someone with Down syndrome starts a new medication.

In addition, those with Down syndrome are at increased risk for poor medication adherence because they may not understand or remember to take their medication. They could accidentally take too much or too little. So it’s important to supervise them when they are taking their medication, or in the case of high-functioning individuals, to regularly check in to ensure they’re taking the correct medications at the right times.

What are the Five Rights of medication administration?

The five rights of medication administration are a set of best practices for delivering medication to patients. 

• Right patient
• Right medication
• Right dose
• Right route
• Right time

Here’s how you know you’re following the five rights correctly. 

• Right patient: You have checked that you’re not giving the wrong person medication meant for someone else.
• Right medication: You have checked that you have the correct medication for them and are aware of any allergies they may have.
• Right dose: You have checked that you’re giving them the right amount of medication.
• Right route: You are giving them their medication in the form they’re supposed to receive it (e.g., as a pill, an injection, or a liquid medication). 
• Right time: You are giving them their medication at the right time of day (morning, night, after eating, etc.) and at the right frequency (e.g., daily, once a week).

General tips for effective Down syndrome medication management

The key to good medication management for people with Down syndrome is to understand that these individuals have a medical condition that affects their ability to process medications.

This means they may need a different dosage, and the drug may need to be administered differently. For example, people with Down syndrome may need smaller doses more often rather than larger doses less often. Instead of a pill, they may need a liquid or chewable tablet. 

Remember to use positive reinforcement to motivate people with Down syndrome. Try to make taking their medication a fun time whenever possible. 

Safe storage is a key component of medication management for Down syndrome. Make sure the medication is stored in a place where it can only be accessed by you and any other caregivers.

Maintain an active relationship with their doctor and call them up whenever you spot signs of a potential allergic reaction or troubling side effect. Be proactive about seeking refills so that the person with Down syndrome doesn’t miss a dose. 

One of the most challenging things about medication retention is remembering to give it at the correct time. Get a weekly pill dispenser, set alarms, and, if you have to, make sure to snooze your medication alarms–instead of turning them off–until they take it. 

Medication list (prescription and over-the-counter) 

Create a list of all the medications the person with Down syndrome is taking. You’ll be able to keep track of everything and know if any pills are missing. This is critical because if you’re a caregiver for someone with Down syndrome and they get into the medication stash, they could accidentally take a dangerous number of pills and potentially require hospitalization.

By keeping a medication list, you’ll also be able to keep track of when they need a refill. You can write it down or use an app to track the list. Many of these apps (usually free) also allow you to record which medications you gave them, what time you gave the medication, and how much of the medication you gave.

Download this free medication tracker

Store and organize the pills in a safe place 

It can be difficult to keep track of medications. Make your life easier by storing and organizing them in a safe place. For safety purposes, keep medications out of reach of the person you’re caring for, unless they’re high-functioning enough to understand the dangers of taking too many pills or giving the pills to anyone who wasn’t prescribed them. 

Use a timed or automatic pill dispenser

Many people have trouble remembering to take their pills every day. If part of your job is to give pills to a person with Down syndrome, it can be difficult for you to remember, too. This challenge is where timed or automatic pill dispensers can help. A well-designed pill dispenser will remind you which day to administer the pills and what type of pill to give. It will also help you remember if you already gave them their medication that day, so you don’t forget and accidentally give them a pill more than once.

Daily usage reminders

Set daily alarms

As a caregiver for someone with Down syndrome, it’s a good idea to set alarms on your phone or alarm clock for the times you’re supposed to give medication. If you can’t give their medication right away (something spilled, there’s an emergency, etc.), resist the urge to turn off the alarm. Instead, get in the habit of hitting snooze. That way, the alarm will come back on before you get too distracted and forget it’s medication time. 

Give medications at different times to reduce side effects

With their doctor’s permission, you can experiment with giving your child or adult with Down syndrome their medication before or after breakfast to see if it reduces side effects. If their medication is keeping them awake or making them sleepy, you can try giving them their medication first thing in the morning or before bed.

Understanding the Drug Facts label 

Interactions

Medications are designed to treat different medical conditions. However, some medications don’t combine well. Medications can cause dangerous side effects and even death when taken together. Many of the medications that you take may interfere with the way other medications are processed by your body. Make sure the healthcare provider has a full list of medications the person with Down syndrome is taking; it’s also important to note if the person has had allergic reactions to medications in the past.

Understanding common medication issues specific to Down syndrome

Common medications

There are no standard medications currently available to directly treat Down syndrome. However, most people with Down syndrome take medications to alleviate other medical conditions they have or to treat pain and discomfort. Certain medications like diuretics and digoxin are commonly used to treat heart failure in people with Down syndrome since they may be born with a congenital heart defect. Diuretics, which help flush the body of salt and water, are used to manage congestive heart failure. Digoxin is used to treat heart failure and irregular heartbeats by improving the function of the heart and regulating the heartbeat.

Side effects and how they can impact ability to take medication

Common side effects to medications like diuretics and digoxin can include dizziness, lightheadedness, drowsiness, and diarrhea. Side effects can make people with Down syndrome reluctant to take their medication or refuse to take it at all. Consult their doctor to find out if they can tweak the medication to minimize side effects or if there are other medication options that may be better for them.

How to encourage Down syndrome patients to take medication

Use positive reinforcement

When someone with Down syndrome takes their medication on time, praise them. Don’t criticize them when they miss a dose. Something like a star chart could be a helpful visual aid. They’ll be able to see how many days they were able to accomplish taking their medication in a row and (if appropriate) work their way toward winning a small prize. 

Figure out what the obstacles are

What’s really stopping the person with Down syndrome from taking their medication? Do they dislike the taste of the pill? Do they have a medical condition that causes trouble swallowing and need a liquid or chewable solution? Are they part of a care program in which someone else is responsible for giving medication to them but is inconsistent with giving medications on time? Find out what the obstacle is so you can work on the issue directly.

Make it fun

If you’re responsible for giving medication to someone with Down syndrome, find ways to make the process fun for them. How about a pill dispenser in their favorite color? Or a Star Wars-themed pill case?

Minimizing pharmacies and doctors

The fewer, the better

Keeping the team of healthcare providers small makes it less likely that a bad drug interaction will occur. The risk of a drug interaction slipping through the cracks goes up when you have more doctors and healthcare providers taking care of a patient. For example, doctors may prescribe new drugs that the other healthcare providers are unaware of, or pharmacies may continue prescribing drugs that may have been discontinued by a specific doctor. When possible, try to minimize the number of doctors and pharmacies you use.

When to reach out to a medical professional

They need a refill

Be proactive about refills. Try to schedule your appointments for when the person with Down syndrome’s medication is about to run out. If it’s not possible to set up a recurring appointment, keep a reminder in your medication list of dates to start asking for a refill.

They lost or spilled a dose

If a dose gets lost or spilled, contact the healthcare provider to let them know what happened and notify them you may be needing a refill early.

Someone else accidentally took their medication

A person with Down syndrome may be missing one or more doses because someone else accidentally took their pills. Contact the doctor to schedule an urgent refill and review the Five Rights with other caregivers. Accidents happen, but reviewing what happened is always a good idea.

Their pills aren’t working anymore or they won’t take them

If something isn’t right with a medication or the person with Down syndrome is refusing to take it, contact their doctor immediately to set up an appointment. They may be able to help you with tips for medication adherence. If the medication is no longer working, the doctor can try to adjust the dose or medication for a better outcome.

They’re showing signs of an allergic reaction to medication

When caring for someone with Down syndrome, watch for signs of an allergic reaction to a medication like skin rash, itching, swelling of the face or throat, and trouble breathing. Consult the information packet that came with the medication for a list of the most common side effects and potential signs of an allergic reaction. If you see signs of an allergic reaction, seek medical attention immediately.

How to ensure that medication management for people with Down syndrome is effective

Medications for Down syndrome can be different from those for other people. People with Down syndrome have a medical condition that can affect the way their body processes medications. People with Down syndrome may also have other health conditions that require the use of different medications. To make sure you’re effectively managing a medication plan for someone with Down syndrome, create a medication list, make sure their medication is stored correctly, regularly schedule refills, and report side effects and allergic reactions to their doctor immediately.