I diagnosed my own dementia in time to slow it down
Having observed the disease in his career as a neurologist Daniel Gibbs is determined to embrace hope about his own diagnosis
Dr Gibbs believes that in time science can find a way to change the course of the disease
Very early in my career, a middle-aged woman came to see me for a second opinion. She had mild but troubling symptoms of cognitive impairment and had seen another neurologist who made a diagnosis of Alzheimer’s disease. She had already had all the appropriate testing to exclude treatable mimics of dementia, and those tests were normal.
Cognitive testing had shown some very subtle impairment of verbal memory and visual-spatial processing. I told her she might indeed have very early Alzheimer’s disease, but it was impossible for me to say with certainty.
A definitive diagnosis requires evidence of the amyloid plaques (clumps of protein fragments) and neurofibrillary tangles (twisted fibres formed from another kind of protein) in the brain that were discovered by Dr Alois Alzheimer in 1906. Until relatively recently, this evidence could only be obtained by examining the brain microscopically after death, and this was long before the advent of donepezil (Aricept) and other medications for treating the cognitive symptoms.
A few months later I learnt that she had died from suicide. The memory of that patient has haunted me ever since.
Decades later, in 2015, I walked into a conference room at the University of California-San Francisco with 30 colleagues around the table. Ordinarily I would have either been prepared to present or consult on a case. Today I was the case. Two years after my retirement as a clinical neurologist I was taking part in a long-term brain imaging study for subjects at risk for Alzheimer’s disease.
After four days of brain scans and extensive cognitive testing, I met with the research and clinical team for the reveal. All eyes were on the presentation screen, much as mine had been since the first time I’d seen a scanned image of a living human brain nearly 40 years ago in medical school. There they were, the unmistakable telltale signs of Alzheimer’s.
One scan showed a moderate amount of beta-amyloid in the frontal lobes. The most intense abnormality was in the prefrontal cortex, which is involved in executive function, and, as it happened, two other brain areas which are involved in processing olfactory information.
I was fascinated – my loss of smell and phantosmia (illusory odours) of baking bread had started about eight years before. Here, finally, appeared to be the tangible proof of a connection to brain changes that now appeared to have been the harbinger of my Alzheimer’s disease. This wasn’t something that had been reported in the literature before, so far as we knew, and created a bit of a buzz in the room. As a scientist, there’s nothing quite like the thrill of discovery. Even if it was my own brain on the screen.
That thrill of discovery is not the case for most patients. More often it’s a sobering or frightening epiphany. Some of my patients said the information was clarifying; they weren’t happy to hear it, but it helped ground their thinking about next steps in a treatment plan we would develop together.
Others came to see me at the urging of someone else – a family member or friend – and often what they wanted most of all was to avoid a formal diagnosis of dementia. In some cases, they feared losing their job and livelihood. In others, the spectre of a dementia diagnosis threatened to upend their sense of themselves and their standing in their profession, family or community. The positive potential of any treatment was often overshadowed by their fears.
The problem in the past was that most of the patients I saw were already in moderate to advanced stages of the disease when their doctors referred them to me. It didn’t help that back when I first started practising in the early 1990s, there was nothing we could do. There were no drugs, we didn’t know anything about lifestyle changes. All we knew then was that most of these patients would progress to a state of complete loss of memory and total dependence on others, and death would come in eight to 10 years no matter what we did. There was no reliable way to slow down the inexorable march of this disease.
Now, neuroscience has advanced to the point that we know Alzheimer’s disease starts in the brain at least 10, possibly 20 years before any cognitive symptoms are noticed. The question is, with earlier detection, can we stop those processes before the damage is done? Can we act to change the course of this disease? I believe the answer is yes. Odd as it might seem, I’m fascinated by this disease that for my entire career I could only observe from the outside. Of course I’m disappointed that I have Alzheimer’s. But at 69, my interest now lies in finding ways to slow it down. I want to buy myself – and my wife Lois, our three children and four grandchildren – more time on this end of the Alzheimer’s continuum.
So I self-prescribed the lifestyle changes I would have suggested to patients in the same position. I adopted a strategic regime of more exercise, with more of it aerobic, a modified Mediterranean diet called the MIND diet, with special emphasis on brain-healthy foods, and everyday activities that kept me socially active and mentally stimulated: daily crossword puzzles, reading six to 10 books per month. I became my own longitudinal study of one.
Over the past five years I’ve been accepted into four clinical trials. I recognise that the chance of me personally benefiting, in terms of prolonging my life or slowing progression of my Alzheimer’s is very small. What I hope is that my participation will benefit the next generation, so that Alzheimer’s becomes a controllable disease within my children’s lifetime, if not mine.
Because early-stage Alzheimer’s like mine ranges from no symptoms to relatively mild ones, I don’t dwell on the darker aspects of the late-stage disease. In my experience, someone’s fear of the future as they come to terms with a diagnosis can often be debilitating beyond the burden of the physical illness itself. My hope is that as we discover more about the earliest stages of Alzheimer’s, long before symptoms begin to emerge, we can normalise the conversation and help more people seek out the professional guidance and sometimes the medication that might help them the most.
The Covid-19 pandemic has forced us all to confront our mortality. What I realised in the past year was that the conversation about Alzheimer’s has long been stuck on fast-forward to the late-stage loss, the fear and stigma of the disease, not recognising the years, even decades of meaningful time that can be maximised with early diagnosis and treatment.
There now is overwhelming evidence that, during the 10 to 20 years before the onset of cognitive impairment, the simple lifestyle changes I mention above and will detail in The Daily Telegraph tomorrow can markedly slow the progression of Alzheimer’s. I believe that a cure will eventually be found, but until that happens we need to focus on these early stages, before memory and a fundamental sense of self disappears. There is no time to lose.
A Tattoo on My Brain by Daniel Gibbs and Teresa H Barker (£18.99, Cambridge University Press). Buy now for £16.99 at books.telegraph.co.uk or call 0844 871 1514