Report: Caregivers are left out of Alzheimer’s, dementia clinical trials

A new study explores the lack of integration of family caregivers to support their loved ones with Alzheimer’s disease and related dementias (ADRD) who are part of clinical trials. 

Less than half of clinical trials incorporate family caregivers in the last 30 years, the report in Alzheimer’s & Dementia found. It was published on Aug. 18. 

That means caregivers aren’t part of the equation when it comes to finding clinical trials and helping their loved ones participate in them — something that could be responsible for the lack of diversity of clinical trials, too.

Researchers looked at trials from 1990 and 2021. They found that less than half of the information pages for trials included caregiver responsibilities such as giving consent, educating caregivers on how to support the person in the study, keeping tabs on their response to the trial, and communicating with the study team. 

Other areas that are missing include details to help caregivers with transportation, translation if necessary, or details on how the trial participant may need to modify lifestyle factors like their diet. There’s also information missing about compensation, which could be vital so caregivers know if they can help with time off from work to support their loved ones.

The authors say clinical trial organizers need to do better to equip caregivers in supporting their loved ones who participate in trials. 

“This enhanced engagement with caregivers could also facilitate recruitment and retention, including participants from diverse communities,” the authors said.

Clinical trial organizers need strategies and policies to engage caregivers in the trial process. It’s “crucial to ensuring that participants with ADRD are well supported and well represented in clinical trials,” the authors said.

They called for more research to look at how caregivers play a role in encouraging their family members to take part in ADRD clinical trials, and to see how they advocate for their loved ones during the trial period. Subsequent trials should also identify what information caregivers need and want to see when their loved one is part of a clinical trial.