In Alzheimer’s clinical trials with people already experiencing memory loss and thinking problems, study partners serve as the eyes, ears and memories of the participant. Partners relay how participants are doing, assist with decisions for them when necessary, and ensure they take their study medications and get to their study appointments.
But in Alzheimer’s prevention research, participants do not have memory and thinking impairment. They are fully capable of reporting their study responses on their own. Why then is a study partner required?
“People who enroll in prevention trials are typically at increased risk for developing symptoms of Alzheimer’s during the course of the trial,” explains Danielle Goldfarb, MD, neurologist/psychiatrist at Banner Alzheimer’s Institute in Phoenix. “That’s why researchers need study partners to share their observations about any changes they see in functional ability, mood and behavior.”
Partners attend study appointments and help participants stay engaged in the study process. “They can also be very valuable in helping someone plan for the possibility of cognitive decline in their future,” explains Dr. Goldfarb.
The ideal study partner is someone who knows you well enough to be familiar with your overall function and behaviors. Partners can be a spouse or an adult child, but they don’t have to be. They just need a good knowledge of your activities, hobbies, routines, social skills, basic daily life, and general health status. And they need to be willing to go through the process alongside you.
If you don’t have someone who can be your study partner, it doesn’t mean you can’t participate in prevention trials. There are quite a few other studies that do not require partners. The Alzheimer’s Prevention Registry posts these options on our website.
Researchers believe prevention trials will not only uncover promising medications, they will create new ways to support people at risk for Alzheimer’s disease. Feedback from study partners can help shape the role spouses, children and close friends play in supporting someone at risk for a future diagnosis. Interested in learning more about study partners and their experience in Alzheimer’s research? Watch this great video from the National Institute on Aging at the NIH.