There is a thoughtful neurologist who has studied the brain for 30 years and treated countless dementia patients. He pitied the Alzheimer's patients who came to his clinic terrified, with chunks of memory missing. In the 1990s, there was nothing a doctor could do, so he hated the disease.
Let alone treatments, even diagnosis relied only on MRI and CT scans. Much later, a cerebrospinal fluid test was developed to measure levels of amyloid and tau proteins.
Then one day, like a bolt from the blue, dementia came for him too.
Dementia-stricken neuroscientist is the story of Daniel Gibbs, a retired neurologist and one of the 50 million people worldwide living with Alzheimer's disease. Many will click their tongues and pity his terrible misfortune, but there is a twist. Ironically, he became completely captivated by his own illness.
Like a detective, he traced his family tree with his wife, a former librarian, to find his Alzheimer's gene and complete the extended family's story, enjoyed a "solo premiere" as he looked at images of his brain shrunken by amyloid and tau, and returned with confidence after joining a clinical trial for a new drug and experiencing the side effect of losing language.
I was deeply curious about how Daniel Gibbs accepts the uncontrollable adversity of Alzheimer's disease. He said he had no intention of repeating the narrative of loss and pain, the basic tone of Alzheimer's. I was deeply drawn to his contemplative sentences, where disaster and humor, medicine and nostalgia mingle.
The scene of drifting on a windless sea and meeting orcas is especially powerful.
I requested a written interview with him, who, thanks to the luck of early detection, has had only mild cognitive impairment for more than 10 years. The answers arrived just two days after I sent the questionnaire. It was a staggering speed. Thanks to his memo that he must "write before he forgets," I received the fastest reply in interstellar history as a gift.
I suddenly recalled what Kamata Minoru, a Japanese geriatric physician I interviewed 4th, said. "It's okay to forget 80% of life." He said the sooner you forget abandoned memories, hatred and grudges, dislike and attachment, the better. Did he say that if you even forget the thought that you will "be a good person," and simply bask in the sun and move your body to walk, you will find yourself a good person? That kind of excellent power of forgetting keeps us alive.
Ironically, Daniel Gibbs' advice was no different. He said the more you walk, the sharper the brain gets, and exercise alone can lower the incidence of Alzheimer's by 50%.
-How have you been?
"I am doing well. My memory is still getting a little worse. The main problem is that my verbal memory is declining. People's names and place names don't come to mind easily. (No matter how hard I try, I can't remember the name of an important city in northern Scotland that I visited with my wife, Lois, a few years ago.) I remember neighbors' names and then they slip away.
What's interesting is that I remember the names of dogs I've had better than I remember their owners' names. My sense of direction is still fine. I've never gotten lost while walking around the neighborhood. I no longer drive. I still read, but books with fewer characters are much easier to understand and follow."
-You met countless dementia patients in the clinic throughout your life. Did you ever think you would become the patient yourself?
"I never thought about it."
-What was it like when it happened? I was struck by the phrase "completely captivated by this disease." To feel like you stepped into the ring with a tiger!
"What made it somewhat easier for me to cope with the disease was that I could step back and view it through a neurologist's lens. The first PET scan I took in 2015 was especially fascinating; amyloid was deposited throughout my brain, and it was particularly prominent in several regions of the olfactory system. I remember saying, 'That's really cool,' when I saw it. We were all very excited to see the pathology and neuroanatomy line up."
He said that, fortunately, because he recognized the signs early, he learned a variety of ways to coax and control the disease in and out of daily life.
The first signal was smell.
-Do you remember the day you lost your sense of smell?
"It was a day in the summer of 2006. I walked past a rose and couldn't smell it. I also experienced olfactory hallucinations that mixed the smells of baking bread and perfume. I mentioned the smell issue to my primary care doctor, but I did not actually expect anything to show up on the MRI.
At first, I opened my brain scan files alone and was shocked. I saw a mass the size of a ping-pong ball. Cancer in my brain—this is a total disaster… To be honest, I thought I would die soon. Thankfully, it was benign and could be removed with a bothersome surgery. Even after removing the pituitary tumor, my sense of smell worsened and a few years later it disappeared completely."
-Is poor sense of smell a sure harbinger of Alzheimer's?
"Yes. It usually progresses several years before cognitive decline begins. But people usually don't recognize the loss of smell until they're tested. Not only Alzheimer's patients but about 80% of people with Parkinson's also have reduced sense of smell, and their symptoms likewise begin years earlier."
-After that, did you dig into the family tree thinking there might be a problem? Reading that part of the book made me want to look for my own missing pieces.
"My wife, Lois, has a hobby of digging into any genealogy. In 2012, we sent in a saliva swab for DNA analysis, and that's when I happened to discover that I carry two copies of APOE-4, a genetic risk factor for Alzheimer's disease. I didn't have cognitive symptoms then, but I learned that by age 80 my risk of dementia from Alzheimer's would be nearly 100%.
Since both my parents died young of cancer, Alzheimer's was completely unexpected for me. When I checked the family history, it was almost certain that my maternal grandmother, paternal grandmother, a maternal aunt, and a few maternal uncles also died of Alzheimer's disease."
The more he skimmed through the family's stories and records, the more clues and patterns he saw. His maternal grandmother wandered the neighborhood in her nightgown near the end of her life. His grandfather showed strange behavior in the last few years of his life. Back then, we called such symptoms senility, not dementia. His paternal grandmother died of a stroke at 81. As the pieces and dots were connected, the family tree of dementia revealed a foreboding outline like that of a predator.
-Over the years, what were the dementia patients like in your clinic from a doctor's perspective?
"Reactions to an Alzheimer's diagnosis vary. In the 1980s, when I first began seeing patients, denial was the most common response. At that time, there was very little doctors could do for patients, and encouraging them was about the best we could offer.
But now we can do much more. We have learned that changes in the brain—namely amyloid plaques and neurofibrillary tangles—begin to form as many as 20 years before Alzheimer's dementia symptoms appear. There are now medications that help people with Alzheimer's disease, and if taken in the early stages, the effect is very significant."
-What was patients' greatest fear?
"An overwhelming fear of losing independence. Most of them genuinely hoped they wouldn't burden their families, even if they had to struggle on their own."
-Let's talk about family. How do your children react to and cope with their father's illness?
"Our kids are all doing well. They know the likelihood of getting Alzheimer's increases with age. Because I carry two copies of APOE-4, each of my children carries at least one copy.
It's important that they understand their own risk and know what they can do to reduce the chance of developing the disease. Also, I try to talk with them more about living actively than about bad news that drips like an unlocked faucet."
-I'm curious: which memories fade quickly and which linger?
"In my case, I can't remember what I read a month ago, but the experiences with patients I met early in my career, and my 30 years of clinical experience dealing with Alzheimer's, are intact. Words often hover on the tip of my tongue, but if I set out to write about my life with Lois and the kids, or my childhood experiences, the sentences flow endlessly.
Typically, problems with episodic memory—recalling events—appear early in Alzheimer's, but procedural memory—performing tasks like riding a bike or playing the piano—generally functions well until later. That's because episodic memory resides in the temporal lobes and cortex, while procedural memory is stored deeper in the basal ganglia and cerebellum. Sometimes a person who doesn't recognize family members will surprise everyone by playing a complex piano piece."
-You cited Proust's madeleine as an example of recalling good times by smell, and said that your madeleine seems to be music. I agree. When I listen to music, it feels like my brain opens halfway.
"Music is truly astonishing. The Beatles' "Michelle" takes me back to my teenage bedroom, sighing over a crush while listening to the radio. There's always a song in my head, so the song and memory come rushing out together. Usually songs from the 1960s. I don't always remember the singer or the title, but I can remember the lyrics. I wondered why music is so firmly embedded in my brain.
Other researchers have looked into this too, and it's probably due to redundancy in the neural networks associated with music. I once saw a video of a prima donna with Alzheimer's demonstrating dance moves after listening to Tchaikovsky's music, even after losing her memory."
He added that only memories meaningful enough to withstand the power of time survive. There are two ways to defy the power of time: repetition and imbuing meaning.
-Judging by your brain imaging findings, your condition should be worse, yet your intellect has held up long enough to write a book and do interviews. Is this common?
"Statistics show that 20% of older adults have amyloid on PET scans but normal cognition. That's because they have a large reserve of brain capacity. It's cognitive reserve. Cognitive reserve is the brain's backup neural network that helps maintain cognitive function at a high level even under siege. It acts like a backup generator and preserves one's mental life."
-Can one tell how much cognitive reserve one has?
"You can't measure it precisely. There's no way to confirm data showing crosswords or reading increase cognitive reserve. But I can feel it. The curiosity, creativity, and critical thinking my parents fostered in my youth helped. My father, an engineer, encouraged me not to wait for toys to be bought but to make them myself, and my mother, who loved music, urged even the young me to make music.
The only reason I've been able to keep reading amid Alzheimer's is entirely thanks to my wife, Lois, who used to be a librarian. I also meet my friend R, who lives in a care facility, every few months for lunch, and we talk about our families, dogs, and neurology. I'm filling my cognitive reserve in many ways."
-You actively take part in clinical trials. Was that a meaningful experience?
"So far, I've participated in eight clinical trials. In late September 2017, when I received an investigational drug, I experienced major side effects. I woke up and couldn't read even simple words. Text messages were garbled, and I couldn't reconcile my checkbook. It felt like fast-forwarding into late-stage Alzheimer's for a trial run.
Fortunately, after being given blood pressure medication and steroids, I could read again. After that, I read six to eight books a month as usual, and I even felt my memory was better than a year ago—no, two years ago. Through such trials, I make the contribution I can. The only way to stop the disease is well-designed clinical trials."
He expanded the illness of Alzheimer's into his own work. To enroll as a participant in research on new treatments, he recorded signs of his cognitive impairment and collected evidence. He wrote a memo: "Remember that you must not forget to leave a record." While people in advanced stages are unaware of their mistakes, he said he was painfully aware of his own.
-What do you do routinely to slow cognitive decline?
"I aim to walk 10,000 steps a day and I walk. Even about 3,000 steps a day helps a lot. For example, my cognitive test scores are on average 8% higher after aerobic exercise. When I hiked to a mountaintop in 57 minutes, they were up 15%.
Regular aerobic exercise is really good for the brain. Exercise also has strong short-term effects, probably because cardiac output increases. Even now, I take a brisk walk before I write."
-Since becoming a patient, how have the meaning and sense of time changed?
"Time feels like it moves much faster, but my cognitive decline isn't rapid, so I often forget that I'm moving toward future disaster. Personally, I don't think it's good for an Alzheimer's patient to be too fixated on the future. Above all, I want to help people now and make meaningful time. There's no time to waste."
He said he leaps for joy whenever he finds, through clinical work, a way to turn an imprecise timeline to his advantage.
-Even so, the fact that it takes 10 years from diagnosis to death is shocking. When your friend and neuroscientist Lisa Genova declared in her TED talk that "our future is as a dementia patient or as a caregiver," my heart sank. Ultimately, with things as they are, how do we find an optimistic exit?
"I'm optimistic that we will be able to prevent, even treat, Alzheimer's disease. It may not happen while I'm alive, but it will certainly be possible for our children's generation. Some drugs will someday be proven effective. Above all, strong evidence is emerging that certain lifestyle changes—what we eat every day, how we act—can slow the progression of Alzheimer's disease.
As I wrote in the book, key habits that can slow the progression of Alzheimer's by up to 50% are: 1 regular aerobic exercise 2 a Mediterranean diet 3 staying intellectually active 4 socializing with enjoyment (this is quite hard for me; I don't like being in groups where multiple people talk at once) 5 getting at least 7 1/2 hours of sleep every night.
It's also important to control cardiovascular risk factors such as high blood pressure, high cholesterol, obesity, smoking, and diabetes. My personal goal is to delay the disease as much as possible so that my life ends from another cause before I reach the late stage of Alzheimer's."'
-Is your journalist friend Greg O'Brien still doing well?
"Yes. Greg published his book From Pluto, a memoir of severe Alzheimer's. His condition keeps worsening—to the point of showing up to appointments in wet clothes—but he still writes to help others and fights the good fight. Both Lisa Genova and Greg O'Brien wrote wonderful blurbs for my book."
It seemed there are surprisingly many neuroscientists with dementia in the world. Daniel Gibbs said he is encouraged by the warm, wonderful collaborations with doctors who share their clinical work at psychiatric associations. The documentary of the same name based on this book, Dementia-stricken neuroscientist, was also submitted to the Rochester film festival, a neurology-related film festival (https://reelmindfilmfest.com). The more we talked, the more it felt like the ambush of Alzheimer's had opened an unexpected new path in his life.
In terms of career, his cognition was normal and his accumulated neurological knowledge was solid, but he had to quit the beloved profession of physician at 62. That's because by age 70, the odds were high that he would become an Alzheimer's patient. But that didn't seem so bad either.
-Would you share a memory from your first year of retirement?
"In the summer of 2013, I remember spending an hour and a half on a boat with a broken engine. There wasn't a breath of wind, so we drifted with the slack sails spread out. Then we met a pod of orcas 100 meters away. In a flash, they suddenly burst into dazzling leaps.
After nearly 20 years of sailing, I've learned something. You see orcas not when you try hard to find them, but when you hardly expect them. You just happen to run into them. If the engine had worked as planned, we wouldn't have seen them. When I call up the first year after retirement, I recall that day, stuck adrift on the sea with no purpose. A gift from the orcas, a gift of time."
The answer—that the joy of sailing comes not from arriving where you planned to go, but simply from being where you are in that moment—resonated deeply.
-Do you still find the brain beautiful?
"I'm not sure I can assert that the brain itself is beautiful. But it is certainly a fascinating subject of study."
-What do you fear?
"It's mostly about loss of control. But I don't dwell on the darker aspects of the later stages. Lois and I have a kind of pact. It's to live in the present. We take necessary steps for anticipated problems and do everything we can to delay progression."
-Are there still new things you're learning?
"I learned from my dog, Jack, how to catch precious moments. Whenever I'm in the kitchen, the way Jack focuses his attention, hoping a piece of carrot or cheese or chicken might drop, is marvelous. That small piece could be, for me, a whole book I can barely remember after just two weeks."
-Who are you most grateful to?
"To my wife, who has been my solid anchor through 52 years of marriage and the past 10 years since my diagnosis of mild cognitive impairment (MCI) due to Alzheimer's disease."
-Lastly, through Dementia-stricken neuroscientist, what did you most want to say?
"Alzheimer's disease progresses slowly. Beta-amyloid plaques are first observed 20 years earlier. I wrote about this in my scientific paper in The Washington Post. All interventions, including lifestyle improvements and new anti-amyloid drugs, are most effective in the early stages of the disease.
Most dementia patients in high-income countries come to the hospital only when they reach the final stage. That's what saddens me most. If possible, begin all screening in your 40s. The brain is sharper with exercise than without. Whether they fade or remain, memories are our sense of how we belong to this world. That's why we must diagnose Alzheimer's earlier and buy time."