By Janissa Delzo
At the Penn Memory Center and Alzheimer’s disease research centers across the nation, research participants are essential to those studying neurodegenerative diseases and lifelong brain health. Without them, there could be no research.
Equally essential, though less obvious, is the study partner.
A study partner is someone who accompanies a participant to Alzheimer’s disease research visits and knows the participant well. Though this is frequently a spouse or adult child, it could easily be a friend, neighbor, or sibling-in-law who sees the participant often enough to accurately report on how the participant’s cognition and function is in their home environment.
Enrolling dyads — a participant and study partner — is often extraordinarily challenging, for a variety of reasons. But in order to advance Alzheimer’s research and get closer to the goal of treating and preventing the disease by 2025, as set forth by global leaders in the National Plan, it’s imperative to understand the challenges and barriers of study partner participation.