After being diagnosed with Alzheimer's disease, in 2013, Eileen Lane wasted no time signing up for not one but two clinical trials at Rush University Medical Center in Chicago. The first involved a daily nasal application of insulin, which didn't prove to be beneficial. In the current trial, Lane receives monthly infusions of a medicine designed to reduce tau proteins in the brain — with no idea yet if her monthly drip will be a step toward halting her pernicious, memory-robbing disease. To qualify for the trial, Lane had to have a series of blood tests; an MRI; a lumbar puncture to collect cerebrospinal fluid; and a battery of cognitive assessments.
The time and occasional discomfort have been worth it. “I want to use my experience with this disease to help unlock treatments that will help someone else,” says Lane, 68, a retired teacher whose father also had Alzheimer's. Lane's husband, Ron, 69, a retired lawyer, puts it this way: “A benefit of being in a trial is you have exposure to a lot of people who are familiar with the disease and dedicated to finding a cure. You find a sense of community, and you're doing something positive, which is inspiring.”
Mike Berg has similar reasons for participating in his second clinical trial for Alzheimer's, this one involving injections of an immunotherapy agent that aims to reduce beta-amyloid plaques in the brain. “I figure if you're going to get better, you have to do something about it,” says Berg, who was diagnosed with the disease in 2015, at age 54, after a career spent managing physicians’ offices.
It's a generous investment by him and his wife, Becky, whose participation requires them to travel two hours each way from their home in Dubuque, Iowa, to the University of Wisconsin-Madison, every two to four weeks. Fortunately, the drug company running the trial sends a driver to pick them up, and they receive a stipend for their time. Still, there's homework to be done, as Becky is required to fill out periodic questionnaires about her husband's day-to-day functioning — including what he's able to do independently or with assistance — as well as her caregiving concerns. She also provides detailed descriptions of activities they did together in the past week or month so the researchers know what to ask him about. But Becky, 58, a retired teacher, stays motivated. “I've read that people in studies do better with this disease because they're actively participating and contributing.”
Indeed, being part of a clinical trial for dementia can be meaningful and inspiring in many ways. As a participant, you could personally benefit from a drug or treatment that turns out to be successful. You may find a sense of community or, perhaps, a better neurologist near you. And you may receive support from people who really understand what you're dealing with.