Family Caregivers Month: How Caregivers Can Be Partners in Research

It’s National Family Caregivers Month. We know that caregivers play a role in caring for their loved ones, often around the clock. But what happens when a loved one is involved in a clinical trial? How can caregivers be partners in developing drugs?

This is a topic that doesn’t get much attention, but as we match patients to trials for diseases like Alzheimer’s, or pediatric trials, here at Antidote we’re becoming more and more aware of the caregiver perspective. Many trials require a study partner, often because children are involved, or because the patient might have some level of cognitive impairment.

The study partner is critical to the success of the clinical trial. This caregiver has quite a few responsibilities related to the clinical trial, such as:

  • Accompanying the patient to trial appointments
  • Ensuring medications are taken according to schedule
  • Watching carefully for any changes, such as symptom improvement or side effects
  • Keeping track of these changes in an organized way
  • Providing updates to researchers

Caregivers may also need to advocate for themselves of their loved one by requesting that researchers follow the best practices laid out by the National Alliance for Caregiving. These recommend that researchers:

  • Speak in patient-centered AND caregiver-centered language. For example, when describing the trial, talking about what certain aspects will mean for a caregiver as well.
  • Help the caregiver figure out the best way to comply with protocol requirements. If a patient with Alzheimer’s gets irritated or aggressive at night, but the protocol calls for pill administration at bedtime, researchers should work with the caregiver on a solution.
  • Help the caregiver understand how to observe the patient effectively - what to look for, how to identify it, how to record it, and how to respond to it.

As a caregiver, the idea of a clinical trial can be overwhelming. As you’re deciding with your loved one whether or not to take part, remember that your loved one will be getting access to the latest treatments in development, and will often be given closer medical care than is usual. If you’re interested in looking for a clinical trial for you or a loved one, feel free to start searching today: