The National Institute on Aging funds Alzheimer’s disease centers at major medical institutions, including Atlanta’s own Emory University.
Researchers at these 27 centers are on an increasingly critical mission to improve the diagnosis and care for people living with Alzheimer’s, as well as to find a way to cure and possibly prevent the disease.
There’s a huge sense of urgency to their work since, arguably, no other health issue has the potential that Alzheimer’s does to devastate millions of individuals, families, health care systems, and even state and federal budgets.
About 5 million Americans age 65 or older were living with Alzheimer’s or related diseases in 2014, with significant disparities in prevalence by race, gender and ethnicity. By 2060, that number is forecast to jump to 13.9 million Americans or 3.36 percent of the population.
Discovered more than a century ago, Alzheimer’s is considered among the most confounding of the major diseases facing humanity. Despite all their efforts, researchers have yet to find an effective prevention or treatment for this progressive deterioration of memory, identity and brain tissue.
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But potentially groundbreaking work continues. At Emory, the research moves along two tracks: the patient assessment stage; and the research to find help for those currently living with the disease and for those who will face it in the future.
“The goal of our research is nothing less than a paradigm shift in the future diagnosis and treatment for Alzheimer’s disease,” said Dr. Allan Levey, director of the recently renamed Goizueta Alzheimer’s Disease Research Center at Emory.
The view from the front door
About 80 people walk into the center at Emory each month – or roughly 1,000 a year — to be evaluated for Alzheimer’s.
Just taking this step puts them ahead of many people.
“Most Americans living with Alzheimer’s never receive a diagnosis,” Levey said. “Those who do often receive it several years into the course of the illness.”
This can be partially explained by the fact that many people – doctors included – assume memory loss is part of normal aging, Levey said.
Denial also plays a part, especially when there’s no effective means for slowing the progression, he said.
But, the reality is “several studies have shown early diagnosis is, in fact, even without a treatment, very important,” Levey said.
Among other things, he said, a diagnosis:
- Shows respect for the individual’s dignity, especially in the early stages when he or she has the capacity to decide on future care;
- Provides the person and his or her family time to address potential financial issues;
- Raises awareness of the person’s potential to fall prey to elder abuse;
- And can prevent unwanted and unnecessary hospitalizations and doctor’s visits.
When patients or family member contact Emory’s research center, they are encouraged to first see a primary care physician for a medical exam, blood work-up and, possible, simple memory screening.
A primary care physician can determine if the patient’s memory loss is due to Alzheimer’s or another condition, such as a vitamin deficiency, Levey said.
At the center at Emory or at one of its five satellite centers, doctors go through many of the same steps. They review any symptoms the patient is experiencing, any changes in symptoms, the patient’s past medical conditions and family history. The patient also will have a physical examination, possibly more blood work, a memory assessment and a brain scan, Levey said.
If a diagnosis of Alzheimer’s is made, the doctor, patient, and patient’s family sit down to come up with a treatment plan.
“The symptoms journey can be quite variable, just like we all have different personalities, strengths and weaknesses,” Levey said.
In the absence of any effective medications, many patients volunteer to participate in clinical trials and patient registries, he said.
The important research being done
A network of Alzheimer’s disease research centers – including Emory’s — is working collaboratively to find a treatment for the disease by 2025.
That’s a lofty goal, one longed for by people who have, had or fear the disease for themselves or a loved one.
The Emory team is using a big data-driven approach to determine the actual underlying changes in the brain. including in the early stages of Alzheimer’s, Levey said.
Already those studies of molecular changes in the brain have allowed researchers to identify thousands of protein alternations in the brain. One of those – brain inflammation – is now viewed as playing a much larger role in the progression of the disease than previously thought, Levey said.
One of the more astounding realizations has been that the build-up of amyloid plaques can occur 20 years before symptoms start to show, he said.
“It tells us that there’s a 20-year period where people have a brain riddled with Alzheimer’s pathology yet don’t have any symptoms, including memory loss,” Levey said.
The Emory team has hope that, if these people are identified, then it could be possible to intervene and stave off the disease, he said.
“Ideally, we would be able to prevent it, and the first prevention trials are underway,” Levey said.
Another exciting project that was launched several years ago is the center’s Healthy Aging study. The largest clinical research study ever conducted in Atlanta, it has enrolled Emory’s Healthy Aging study, it has enrolled more than 20,000 participants – and is looking to recruit several thousand more — with the goal of learning more about the risk factors for Alzheimer’s, Levey said.
“We’re trying to develop the next generation of biomarkers that can improve diagnosis to see if we can slow down or prevent the disease,” he said.