Family Caregivers Month: How caregivers can be partners in research

November is designated as National Family Caregivers Month, which is a way to honor over 50 million Americans that provide care and assistance to loved ones. Caregivers play a vital role in the medical journeys of many patients, and they often dedicate their entire lives to maintaining a person’s health and dignity throughout the process. 

Because of how involved caregivers and care partners are in a patient’s life, it is important to consider their perspective when it comes to treatment — especially in the case of clinical trials. We see this especially in trials surrounding pediatric conditions or Alzheimer’s disease, but it can apply to trials focused on any area of research. In fact, many trials require a caregiver to become a study partner because the patient may be a minor or have some level of cognitive impairment.

A caregiver’s role in a clinical trial

Caregivers and care partners play an important role in clinical trials, both in supporting patients and increasing the potential pool of patients that can participate. Some ways they assist with the research process include:

  • Accompanying the patient to trial appointments
  • Making sure medications are taken on the prescribed schedule
  • Monitoring changes such as symptom improvement or side effects
  • Tracking a patient’s progress through the trial
  • Updating researchers about any developments

Caregivers may also need to act as advocates for themselves throughout the process to make sure that researchers are following the best practices detailed by the National Alliance for Caregiving. Some key things to look out for include:

  • Researchers using patient- and caregiver-centric language
  • Receiving guidance for how caregivers and care partners can comply with study requirements
  • Thorough explanations for what caregivers should be monitoring patients for

The idea of having a loved one in a clinical trial may feel overwhelming, but by carefully evaluating whether taking part in medical research is right for them and you, it is easier to come to a decision that works for all parties. Clinical trials can provide patients with access to potential new treatments and can open up access to specialized and tailored medical care. If you are interested in finding a clinical trial for you or a loved one, start the search today.