Marsha Fowler still remembers vividly what it was like to watch as her mother showed the first signs of memory loss that are often the first symptoms of Alzheimer’s disease. “She would write notes to herself everywhere and lived by her list of things that needed to be done–to the point where it was very troublesome for her,” Fowler recalls.
As the symptoms of the disease worsened, it fell to Fowler and her siblings to manage their mother’s care. “As we watched that progress,” she says, “we had to get her into an assisted living facility in Des Moines that could also offer care for memory loss and Alzheimer’s.”
The staggering risk of Alzheimer’s disease
Age is the greatest risk factor for Alzheimer’s disease, a progressive form of dementia. The major culprit is the build-up of two proteins, beta-amyloid and tau, that damage the connections between neurons in the brain and short-circuit the nerve cells responsible for memory.
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Alzheimer’s disease is the sixth leading cause of death in the United States and it’s the fifth leading cause of death among people ages 65 years and older. The Alzheimer’s Association reports that more than 5.5 million Americans of all ages live with Alzheimer’s and approximately another 200,000 Americans under the age of 65 have early-onset Alzheimer’s. While there are five FDA-approved drugs that treat the symptoms of Alzheimer’s, there is currently no cure for the disease.
In May the Centers for Disease Control and Prevention (CDC) announced the death rate for Alzheimer’s had increased 55 percent between 1999 and 2014. This dramatic increase is due in part to the to fact that Americans are living longer and in part because of demographics. As the baby-boomer generation ages, a larger proportion of the population is vulnerable to the disease. It may also be that Alzheimer’s is being diagnosed earlier and acknowledged more often as the cause of death.
The increased death rate is reason for pause on its own, but it’s also a sign of the scale of what is poised to be a public health crisis. Without effective treatment, “it’s going to be an epidemic,” says Dr. Howard Fillit, MD, who directs the Alzheimer’s Drug Discovery Foundation.
Accelerating research for prevention
Prevent and effectively treat Alzheimer’s by 2025. That’s the urgent objective set by the National Plan to Address Alzheimer’s in 2012, the national action plan for accelerating the public-private research agenda sparked by the National Alzheimer’s Project Act signed by President Obama in 2011. Spearheaded by the National Institute of Health (NIH), the national plan aggressively expands research targeted at preventing and treating Alzheimer’s and marks a pivotal shift in how researchers are approaching this devastating disease.
Fillit, a neurologist and a geriatrician who has been dedicated to Alzheimer’s research for over 30 years, is optimistic that progress will be made as researchers learn more about how to detect Alzheimer’s disease at its earliest stages, accelerate drug discovery, and test more promising therapies through clinical trials.
Because of advances in understanding how Alzheimer’s progresses, the current thinking among many researchers is that the best chance for treating Alzheimer’s is prevention — before the protein build-up that characterizes the disease wreaks havoc on brain cells, says neuroscientist Dr. Laurie Ryan, who directs Alzheimer’s clinical trials at the National Institute on Aging (NIA). Researchers now foresee a time when Alzheimer’s will be approached as a chronic disease, such as heart disease or diabetes, with preventive treatments serving as the central weapons in their arsenal.
Accelerating research will spur advances in understanding the disease by identifying Alzheimer’s at its earliest stages. Learning more about the biological changes that underlie the disease will help scientists and researchers to unlock new treatments. And enlarging and coordinating public-private research globally will also help translate the latest research advances into front-line medical care and public health initiatives. But their progress hinges on accelerating the clinical research that is key to developing new therapies.
The hope of clinical research
Fowler’s experience taking care of her mother and watching the toll Alzheimer’s took on her and their family motivated her to be as proactive as possible when it came to managing her own risk for developing Alzheimer’s. Starting in her early 50s, she educated herself about prevention strategies, learning what experts believe about the possible connections between brain health, diet and exercise. She also decided to participate in a clinical study related to Alzheimer’s research conducted by the Banner Alzheimer’s Institute in Phoenix.
Part of the appeal of participating in research, Fowler says, was the opportunity to be directly part of something that had potential far-reaching effects for changing how Alzheimer’s disease is diagnosed and treated–in ways that could help her family and others.
The longitudinal study Fowler participates in tracks the first signs of Alzheimer’s, before symptoms of memory loss appear. Every two years, Fowler, who is now 67, heads to the Mayo Clinic in Scottsdale, Arizona for a day’s worth of brain imaging, thinking, and memory tests. Medical researchers follow the results of Fowler’s tests, and those of other participants, over time.
Collecting this data is key to better understanding the role genetics play in chances of developing the disease and will further researchers’ knowledge about how, and when, Alzheimer’s disease develops. Some of the study’s participants carry copies of the APOE-4 gene, the major gene associated with increased risk for late-onset Alzheimer’s disease. Some do not. But scientists need to study both groups to better understand the course of Alzheimer’s in order to develop approaches to early detection and to develop interventions, such as drugs, that could treat and prevent Alzheimer’s.
Recently, Fowler decided to participate in a new study called GeneMatch, which relies on genetic screening to help identify potential clinical research participants and to help accelerate the research recruitment process so that scientists can more quickly test promising therapies. GeneMatch is led by the Alzheimer’s Prevention Initiative at the Banner Alzheimer Institute in Phoenix, one of 32 Alzheimer’s Disease Centers that receives support from the NIA and NIH.
As part of GeneMatch, the results of Fowler’s genetic testing are kept confidential—even from her. She won’t learn the result of her genetic testing and it won’t be added to her medical records. The test results are only used for screening, to see if she might be a good fit for a clinical research study, now or in the future. Fowler hasn’t been matched to a study yet, but just her decision to be screened helps further the progress of clinical research. Meanwhile, she is joining a community of people like her who are personally committed to helping advance Alzheimer’s research and helping assure that clinical research can advance as quickly as possible.
The need for volunteers
“80 percent of Alzheimer’s research studies are delayed because too few people sign up,” explains Jessica Langbaum, PhD, the principal scientist of the Banner Alzheimer’s Institute. “Researchers have to screen 10 to 15 times the number of people we need to find participants for a study,” she explains. “If we can do this faster, we can find an answer faster, and hopefully find a cure or preventative treatment faster,” Langbaum says.
Her goal, as the principal investigator of GeneMatch is to enroll 500,000 people in the program. There are currently 15 study sites in 10 states, plus the District of Columbia that are recruiting people ages 55-75, live in the US, and do not show signs of cognitive impairment, for Alzheimer’s prevention studies. It’s one of several efforts to accelerate participation in clinical research spotlighted by the National Plan to Address Alzheimer’s.
Fowler knows first hand what a difference new Alzheimer’s treatments could make. Thinking back to what it was like to care for her mother, part of Fowler’s decision to participate in clinical research was to gain more knowledge about her own health. “If there was something that was going on, I wanted to be able to prepare my children so that they wouldn’t have to go through some of the things that I went through and my siblings went through when my mother went through all of this,” she says.
How you can help end Alzheimer’s
Scientists need people from all backgrounds to become involved in research. The Alzheimer’s Prevention Registry, another program of the Alzheimer’s Prevention Initiative, helps identify a wide range of people who may be eligible to participate in studies. Some studies are conducted are entirely online while others might involve visits to a research site. Many studies need to draw from a broad section of the public, including people from all backgrounds. Other studies may have to consider many possible participants to identify the few who meet their specific criteria. “There are studies out there for all of us to participate in,” Langbaum says.
For Marsha Fowler, participating in clinical research is just one part of her larger commitment to keeping intellectually engaged and embracing a range of prevention strategies. She’s committed to physical exercise and takes care to eat well–behavioral strategies that are recommended for brain health. Now in her late 60s, she could retire, but she says she plans to continue her work as a practice manager working with pediatric specialists because, she says, “it keeps me on my toes.” For Fowler, paying attention to what’s new in Alzheimer’s prevention research is an essential part of keeping her brain healthy.