SACRAMENTO, Calif. — There are close to 700,000 people with Alzheimer's in California, according to data from the Alzheimer's Association, Northern California and Northern Nevada Chapter. By 2025, that number is expected to be close to 840,000 people.
"In Northern California, we have hundreds of thousands of people with the disease," said Elizabeth Edgerly, Ph.D., executive director of the Alzheimer’s Association, Northern California & Northern Nevada. "The estimates would be about 300,000 people living with Alzheimer's or another type of dementia, and many of them are invisible and they're invisible for various reasons. The first is that half of all people with dementia like Alzheimer's don't get diagnosed. Their family knows, their friends know something's up, but they don't actually get a formal diagnosis. When people are diagnosed, unfortunately, about half of them are not told of their diagnosis."
But there's hope for those being diagnosed and in the early stages of the disease.
According to the Associated Press, U.S. health officials recently approved a closely watched Alzheimer’s drug shown to modestly slow the early stages of the brain-robbing disease.
The drug, Leqembi, is the first shown to slow the decline in memory and thinking that defines Alzheimer’s by targeting the disease's underlying biology. The Food and Drug Administration approved it specifically for patients with mild or early cases of dementia.
“Sometime before I got into the trials, I had a couple of memory lapses… I went up to UCLA and I said, 'Do I have a problem?' They tested me at that time,” said Jack Driscoll, a recent participant in clinical trials relating to Leqembi who is now on the medication. “I've been in it for two years and a month.”
Driscoll says he has a family history of the disease.
“I had an aunt who was really the only one, but she went into some really difficult times,” he said. “So, I'm aware of where I could be, and hopefully through the medication, I will have a longer time to be, I guess who I am now. Because once you get deep into Alzheimer's, you are not who you were.”
Every two weeks, a patient is given the medication intravenously.
“It does have to be monitored,” said Michael Irizarry, senior VP of Clinical Research for the Alzheimers Disease and Brain Health Group at Eisai.
Eisai is the parent company producing Leqembi.
“There are MRIs that are required early on in treatment, to make sure that people don't have some of the adverse events that can be seen with these types of therapies," said Irizarry. "These events include areas of things that create fluid in the brain, or small areas of bleeding in the brain that generally are asymptomatic, but need to be monitored by an MRI scan and managed if they do occur.”
Currently, Irizarry says the medication is under the accelerated approval pathway, meaning it was approved because it showed a reduction of amyloid in the brain.
“Leqembi is one of the first drugs that can slow down the progression of Alzheimer's Disease, based on our results of our phase three clinical trial,” said Irizarry. “What that means is that people have a longer period of time in the earlier stages of Alzheimer's Disease, so more time being able to do the activities that they're currently doing before they start to progress further.”
It's something Driscoll is aware of.
“I know that I'm slipping a bit,” he said. “It's memory, I have to think about it. And it's not just like most people, ‘Where are my pants?’ or ‘Where's my phone?’ It's bigger than that but I've been able to maintain a pretty good sense of even the little things, but I know I have Alzheimer's and for my benefit, I've got a great family support group that's helping me.”
Dr. Irina Skylar-Scott, clinical assistant professor at Stanford, was one of many experts that were part of the clinical trials. She shared her optimism about the medication and expressed her concerns.
“I'm encouraged that there is a positive trial in Alzheimer's Disease, but I will say this is probably not the game changer that everybody is hoping for,” said Skylar-Scott. “When I say a positive trial, I mean that it's statistically significant.”
She elaborated.
“There was a difference between people who were given the Leqenimab versus people who were given Placebo, in the sense that it didn't reverse changes in terms of cognitive decline. It didn't prevent the decline from happening, but it slowed the pace of decline a little bit.”
Still she remains optimistic, a similar sentiment echoed by Keith Vossel, director at the Easton Alzheimer's Center at UCLA; and Michael Weiner, professor of Radiology at the University of California, San Francisco.
According to the United Kingdom National Health Service — Alzheimer's disease is potentially caused by, “the abnormal build-up of proteins in and around brain cells. One of the proteins involved is called amyloid, deposits of which form plaques around brain cells. The other protein is called tau, deposits of which form tangles within brain cells.”
This is what the doctors and medical professionals ABC10 spoke with pointed out as to why discussions about Leqembi are positive.
“It's unique because it targets the underlying cause of the disease, at least one of the potential causes, which is the amyloid plaques that form in the brain, and it helps remove those from the brain over time,” said Vossel.
Time, family and appreciation are something Driscoll highlighted as he looked back on his life.
“I've had a good life,” he said. “I think that you need to pull your family close… It's just the comfort of having family with you all the time… it makes me feel like I'm still a part of the universe.”
As for what this means to those on the frontline in research and finding a cure for Alzheimer’s Disease, Skylar-Scott had these strong words to say...
“I understand why patients and families are eager to find a therapy, many of them are desperate for some hope,” she said. “I absolutely understand that… I understand some of those feelings. What I hope they'll take away is that we're working very hard as a field to get some of those game-changing therapies to them, but we're not there yet.”
Meanwhile, Edgerly says it's important when we talk about solutions and drugs like Leqembi that we normalize people identifying an issue and talking with their doctor.
"We have some work to do to even get to the point where in the state of California, and across the country, people are going to find out their diagnosis in time to benefit from these treatments," said Edgerly. "We're extremely concerned about communities where they have a hard time getting the latest and greatest. I think in some of our urban settings, people will be lined up ready to get these. But what about rural communities or more diverse communities? It's going to be a tall order for us to ensure equity."
Here are the 10 early signs and symptoms of Alzheimer's, according to the Alzheimer's Association:
- Memory loss that disrupts daily life
- Challenges in planning or solving problems
- Difficulty completing familiar tasks
- Confusion with time or place
- Trouble understanding visual images and spatial relationships
- New problems with words in speaking or writing
- Misplacing things and losing the ability to retrace steps
- Decreased or poor judgment
- Withdrawal from work or social activities
- Changes in mood and personality
To learn more about each sign, click HERE.
The Alzheimer's Association offers a 24/7 helpline for the families of those with dementia. The number is 1800-272-3900. There is also a number of virtual support groups.
