In February, 2019 Daniel M. Gibbs, MD, PhD published an unusual piece in the medical journal JAMA Neurology. It was unusual because it wasn’t a report on the results of a recent study or a commentary on recent findings in the field. Instead, it was an essay in which he issued a challenge to his colleagues – a call to arms to change attitueson Alzheimer's and be more aggressive in diagnosing the disease early.
It was also unusual because Gibbs wrote it from the perspective of both doctor and patient. After spending 25 years caring for Alzheimer’s patients in his Portland, Oregon neurology practice he developed the disease himself. He’s now been living with it for at least 13 years.
That essay turned out to be the opening salvo in what has become Dr. Gibbs’ mission: to change attitudes and assumptions about what it means to have Alzheimer’s disease today, and to push both doctors and patients to seek out diagnosis at the earliest signs of the disease. The very fact that he was able to write such an essay after more than a decade of living with Alzheimer’s is an example of why he says this mission is so important.
Mounting evidence shows that early intervention and treatment offers the best chance at slowing the progression of Alzheimer’s disease – and perhaps in the not-too-distant future, even the ability to halt or prevent it altogether. Dr. Gibbs says it’s time to stop letting fear get in the way of that.
“The problem is, in the past we didn’t recognize the disease until people were already in the moderate to late stages of it. It didn’t help that back when I first started practicing in the early ‘90’s, there was nothing we could do. There were no drugs, we didn’t know anything about lifestyle changes – and I hated it. Not just me, but everybody [in the profession],” Dr. Gibbs says.
“It was the same as cancer had been twenty years before that. Nobody talked about it. People didn’t want to know. But then better cancer treatments were developed and there was reason to have hope, and to try and recognize and attack the disease early. That’s where we are today with Alzheimer’s,” he says.
And yet, fear remains a powerful obstacle; there are few diseases that inspire such dread. But Dr. Gibbs says that while an Alzheimer’s diagnosis is of course incredibly difficult to receive, getting it earlier rather than later provides the opportunity to maximize the time you have – both in terms of quality and quantity – and perhaps for the first time, today it also offers a measure of hope.
“We have to get rid of the fear and stigma that’s attached to late-stage disease when we’re talking about early disease. Because the truth is, early-stage Alzheimer’s really isn’t that bad,” he says. “For many people that’s a shocking statement to hear, but it’s true. I’ve had it for a long time and most people would have no idea that I have a problem.”
Dr. Gibbs attributes that fact to a number of things. For one, being diagnosed earlier in the disease process by definition means there will be a greater length of time before more severe symptoms develop. But more importantly, he’s had the opportunity to take steps to try and slow its progression.
“We know now that you can have the hallmarks of Alzheimer’s in your brain for decades without any symptoms. And even in the early stages of disease when you have mild symptoms, your life can be pretty close to normal,” Dr. Gibbs says.
“The goal should be to prolong that stage as long as possible, through the lifestyle changes we now know can help and the treatments we now have. But we can’t do that if we don’t know there’s a need. That’s why it’s time to shift our focus to recognizing the disease in its early stages, as early as we can, because that’s where disease modification can happen.”
Even for Dr. Gibbs, recognition of his own disease didn’t come quickly.
He experienced his first symptom in 2007, at age 55. He began having difficulty with his sense of smell, at times not being able to smell anything and at others smelling scents that weren’t actually there. Over time he began to suspect he might have Parkinson’s, since olfactory disturbances are more commonly linked with that disease.
Five years went by before Dr. Gibbs got his second clue, this time by chance. He took an at-home genetic test to learn more about his genealogy. But the kit offered the option to learn health-related genetic information as well. Given his suspicion that he may have Parkinson’s disease, he decided to view those results (something he doesn’t recommend most people do without medical guidance).
To his surprise, they showed that he was a carrier of two copies of the ApoE4 gene. Having one copy of the gene increases your risk of developing Alzheimer’s by two to three times. Having two copies increases risk by twelve times.
“That was a shock because it totally wasn’t on my radar,” Dr. Gibbs says. “Both of my parents died relatively early of cancer and there was no clear history of Alzheimer’s disease in the rest of my family either.”
About a year later he began experiencing mild memory problems – occasional trouble recalling a colleague’s name, difficulty memorizing the new phone number for his office. The impairment was so mild he may have ignored it if he hadn’t known about the results of his genetic test. But he did know. He didn’t have a firm diagnosis yet, but the signs were there.
In 2013, at age 62, he retired from practicing neurology.
It wasn’t until 2015 that Dr. Gibbs’ Alzheimer’s diagnosis was confirmed. Because of his ApoE4 status, he had volunteered for two Alzheimer’s research studies at UC San Francisco. They involved cognitive testing as well as PET imaging to find and monitor tau, a protein that can build up and form “tangles” in the brain. These tangles, along with a build-up of plaques made from another protein, amyloid, are what lead to the development of Alzheimer’s disease. The tests left no doubt, and he was given an official diagnosis.
“Because of this chain of events I was diagnosed very early,” Dr. Gibbs says. “It was surprising and frightening at first, but it has allowed me to be proactive. Now, 13 years after my first symptom, I’m still doing well.”
“I loved being in the studies. I felt like I was making a contribution, even in studies where it might not have turned out to be successful for me,” Dr. Gibbs says. “I also just really enjoyed it, I found it fun. The doctors and research nurses all became friends. Now that may just be me, but I think most people who sign up for these studies end up enjoying them, at least those I’ve talked to. It provides structure for life at a time when structure may be hard to find.”
Dr. Gibbs points out that not only does participation in a study help the research move forward for those affected in the future, but it could actually help the participants who are already affected now as well. He believes it did for him.
One of the studies Dr. Gibbs participated in was a clinical trial for the drug aducanumab. It’s designed to remove amyloid plaques from the brain, thereby stopping any further damage or impairment from happening. While it was clear that the drug is effective in removing the amyloid plaques, researchers are conflicted about whether that actually has any benefit in treating cognitive decline. Initial study results indicated that it didn’t. But it was later found that in study participants who received the drug at a higher dose, it did.
The drug’s maker, Biogen, has applied for FDA approval. If approved, aducanumab would be the first new treatment for Alzheimer’s disease in 16 years. It could also open up a new era of Alzheimer’s treatment where the ability to stop the disease in its tracks is within reach.
Unfortunately for Dr. Gibbs, the drug currently is no longer an option for him. He was among the study participants who had to stop taking the drug due to a side effect called ARIA (Amyloid-Related Imaging Abnormalities).
ARIA is essentially swelling or a small hemorrhage in the brain. These abnormalities are seen in a small percentage of people in the general population but the incidence was higher in those who received the drug, particularly those who received it at a higher dose, as Dr. Gibbs had. The primary symptom was headache, but the majority of patients had no symptoms and the ARIA generally resolved within four months.
Although Dr. Gibbs had to stop using the drug he still believes it helped to slow the progression of his disease and he remains hopeful that, with further refinement of the dosing regimen, it will become a significant new tool in the treatment of Alzheimer’s.
“I’m quite optimistic about it. It really does remove amyloid, the controversy is whether that actually prevents or slows cognitive decline. For me, I think it did,” he says. “I think in the future we’ll be giving people drugs earlier, particularly anti-amyloid ones [like aducanumab]. Once the neurons are gone, they’re gone. It’s going to be another generation before there’s any hope of figuring out how to regenerate them. But I think it is viable to have something relatively soon that prevents or slows the process of losing those neurons if the treatment is started early enough.”
Recent research has shown certain healthy lifestyle changes to be helpful in warding off and slowing dementia. Dr. Gibbs encourages everyone to incorporate these changes into their lives, but particularly those who have an increased risk for the disease.
“Many people say to me, ‘why would I want to be proactive in knowing my risk or getting diagnosed when I could just do these things anyway, even without knowing?’ I had that same conversation with my kids, because they of course have inherited at least one copy of the ApoE4 gene from me,” Dr. Gibbs says.
“My argument is that one of the benefits of finding out your genetic risk or getting an early diagnosis is it really gives you a kick in the butt about actually doing those things,” he says.
“When you start thinking about these things you’re usually in your forties or fifties, which is the busiest point of your life. It’s hard to make these choices a priority at that time. But it might really help you shift your priorities if you know you have an increased risk.”
So, what are these lifestyle changes?
Dr. Gibbs follows guidelines for diet, exercise, sleep and activity that are believed to help slow disease onset and progression. He exercises regularly, making sure to get 10,000 to 15,000 steps in every day and visiting the gym every other day for a more vigorous workout. He follows the MIND diet, a variation of a Mediterranean-style diet designed specifically to prevent dementia and loss of brain function. He gets eight hours of sleep every night. And he stays mentally and socially engaged, reading two to three books per week and continuing to attend neurology conferences.
At a neurology conference in December, 2019 Dr. Gibbs met Dr. Stephen Salloway, a world leader in Alzheimer’s research who also led one of the study sites for the aducanumab clinical trial. Dr. Salloway is director of neurology and the Memory and Aging Program at Butler Hospital in Rhode Island, and is the Martin M. Zucker Professor of Psychiatry and Human Behavior and professor of neurology at the Warren Alpert Medical School of Brown University.
“I already knew him by reputation. He’s published a lot in the area of amyloid PET and ARIA, so he was really interested in my story because I had about the most severe case of ARIA there was [in the aducanumab trial],” Dr. Gibbs says. “We talked a lot about the potential of aducanumab as a treatment and ways to possibly mitigate the ARIA side effect that can be caused by the higher doses. We’re staying in touch on the subject, and I’m optimistic about where the future might lead with this drug.”
Aside from his plans to stay involved in research studies, Dr. Gibbs is also about to publish a book that details his Alzheimer’s journey thus far. In it, he will share the important messages of what has become his life’s mission in the hopes of encouraging others to better help themselves and inspiring doctors to help lead the way:
Know your risk. Seek an early diagnosis so you can be proactive; there are things you can do and there can be plenty of life left to live. There is much hope for the future. But we all have to be willing to move past the fear to find it.
Related Resources
Learn more about research studies at the Memory and Aging Program at Butler Hospital
Worried about your memory? Have this "physical for the brain."
If you're 40+ with normal memory or mild memory loss, you can help in the fight against Alzheimer's. Here's how: butler.org/ALZregistry