CLEVELAND, Ohio — The long quest to find a cure for Alzheimer’s disease could become discouraging. But ordinary people won’t allow that. They are a source of encouragement for doctors and researchers dedicated to stifling the disease, and for the people stricken by it.
“Participating in a clinical trial gives me and others the opportunity to do for those who are after us what others did for us in past trials,’’ says Rochelle Long of Shaker Heights, who, for 17 years, has participated in clinical trials that seek answers to Alzheimer’s causes, pursue treatment strategies and, hopefully, find a cure.
“And, it’s a chance to be a part of the ‘army’ of people working to find a cure, to eradicate this unforgiving disease that tortures the individual and that person’s loved ones,” Long says. “All while taking a shot at a better quality of life for my mom, the fourth in her family to be diagnosed with Alzheimer’s.”
Long, a healthy 62-year-old who does not have Alzheimer’s, has been caring for her mother, Shirley, 81, since she was first diagnosed with the disease. Rochelle Long is among those who participate in clinical trials as researchers work to find tactics and medicines to battle the disease and its effects.
And more volunteers are needed. “We have learned a tremendous amount about how to treat AD through this process,” says neurologist Alan J. Lerner, MD, director of University Hospitals Brain Health and Memory Center in Beachwood.
“We can’t do these studies without people. They are the backbone of what we do,” he said.
People interested in joining an Alzheimer’s clinical trial at University Hospitals can call 216-464-6215 or visit www.UHhospitals.org/memoryresearch.
People are excluded from trials for a variety of reasons, including certain health conditions, but Lerner says, “We always try to work with the person to see if we can overcome the barriers.”
There are currently 5.8 million Americans living with Alzheimer’s, the sixth-leading cause of death in the United States.
Lerner recalls some now-dispelled beliefs about Alzheimer’s: that it can’t be detected until after a person’s death and autopsy; that people with Alzheimer’s are unaware of their memory loss; that nursing home placement is inevitable.
Now, in large part due to volunteer clinical trials, new imaging tests allow doctors to see proteins typically deposited in the brains of those who have Alzheimer’s. It has become evident that most people with memory loss are aware of their problems (although everyone experiences normal traits of forgetfulness in the aging process, called “normal age-related cognitive decline” by some researchers).
And, nursing home placement is not inevitable, as caregivers can be helped with managing their loved ones’ conditions at home for long periods of time.
University Hospitals Brain Health and Memory Center is currently recruiting clinical trial volunteers. It works with Washington, D.C.-based The Global Alzheimer’s Platform Foundation (GAP), which aims to shorten the duration of the disease, reduce the cost and improve the effectiveness of clinical trials. GAP president John Dwyer says that 15,000 to 20,000 people across the United States are needed annually to enroll in the trials.
“It is impossible to discover a cure if we don’t complete the clinical trials that are required to discover a therapy,” Dwyer explains. “It is essential that these trials recruit enough participants to scientifically show the proposed therapy is safe and effective.
“If people don’t enroll, we cannot find a cure. And we need to always remember that the first person who is ever cured of Alzheimer’s will be in a clinical trial.”
University Hospitals and the Cleveland Clinic are national leaders in clinical trial research, according to Dwyer.
“It is well known that the Alzheimer’s clinical trial teams at University Hospitals and Cleveland Clinic are some of the best in the world,” he says.
“What is less known is that the staffs’ dedication and commitment to the participants in their trials is tremendous, leading to a genuinely positive and enriching experience. For example, one University Hospital participant told me she considered her monthly trip to the clinic as her ‘spa day.’“
Anne Gruettner, 65, of Aurora, and Arleen Twist, 79, of Cleveland Heights, are clinical trial participants.
Unlike Rochelle Long and Twist, Gruettner is herself battling Alzheimer’s. She was diagnosed with early-onset Alzheimer’s in November 2016, nearly a year after her father, Donald, died of the disease.
Gruettner began as a volunteer 18 months ago, participated in the Study of Nasal Insulin to Fight Forgetfulness (SNIFF) research, and has signed up for another trial.
“Initially, I volunteered for a selfish reason, to prolong my life and slow the illness progression of Alzheimer’s,” Gruettner says. “However, once being in the SNIFF study, my attitude changed to really wanting to be of help and service for all suffering from AD. Basically, from ‘all about me’ to ‘all about us.’
“My general health is good, physically and mentally. I’ve accepted the fact that I do have AD and make the most of my day being grateful that I still remember what day it is.
“I had a phenomenal experience at the UH Brain, Health and Memory Center for my clinical trial. The staff was informative, caring and kind. We became like family members.”
Twist has been interested in the battle against Alzheimer’s since her mother, Hazel, died of the disease in 1992 at age 81. She began participating in clinical trials more than 10 years ago.
“There are primarily positives,” Twist said of taking part in trials. “I’m able to more or less set my own participation schedule. The medical people I encounter are wonderful, just like friends, and capable. I’ve had to have a couple of MRIs, which I’m not fond of, but because they are necessary for the study, I don’t think of them in a negative way.
“I read many articles about science, and have come to realize that so many innovations involving life — as well as technology, physics and chemistry, etc. — rely on studies of all sorts. The more that people can be encouraged to participate, the better. The more studies that are done, the more will be successful, and the better will be the outcomes for all of humanity.”
Rochelle Long is a member of the University Hospitals Minority Outreach Board, encouraging African Americans and Latinos — who both are disproportionately affected by Alzheimer’s but underrepresented in research — to get involved.
Originally posted on Cleveland.com on July 22, 2019.