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For Gayatri Devi, M.D., stories have always been at the heart of her medical practice and research. “Medicine is all about stories,” said Devi. “You tell the doctor what's wrong with you, and then you two embark on a journey together to discover what is causing it.”
But a number of years ago, after some 20 years as a neurologist focusing on patients diagnosed with Alzheimer's disease and dementia, Devi found herself confronting a curious dilemma: The story she'd been taught about Alzheimer's — that it was a single disease — differed greatly from the reality she saw while treating patients. “I came to believe more and more that Alzheimer's is a spectrum disorder that presents with different symptoms, progresses differently and responds differently to treatment, with a unique prognosis for each person,” she said.
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That epiphany was a watershed moment for her as a clinician, and it's the first thing she wants people to know in her recent book, The Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias. Here she talks about why it’s important to reexamine our assumptions about Alzheimer’s, whether we are worried about memory loss, are seeking treatment or are concerned about a loved one.
When did you first realize Alzheimer's was a spectrum disorder?
Like many doctors, I had been taught to think about Alzheimer’s in a certain rigid way — that it was one kind of disease. But through the years, my patients’ stories were pushing against that ‘form’ and breaking it apart. I remember talking in various news interviews about how Alzheimer’s is a different disease for different people and some people do very well and others don’t, and the telling of the story helped me crystallize an idea that was unformed in my head and was so contrary to what I had been taught and what I had read and what I believed — the idea that patients could do well and people could function with this condition.
Why is it important to think of Alzheimer's in this way?
When people start experiencing memory loss, they immediately think of the kind of impairment we've all been shown through news reports, books and movies, and they are often afraid to seek help. They think they will lose their jobs, put their families and lives in turmoil or simply be treated differently if diagnosed with Alzheimer's. But there are different stages of the disease and different courses of treatment. As of now, we have not yet learned to associate Alzheimer's disease with functioning individuals, although this is, in fact, true of the majority of patients I've treated.
Can you describe someone you'd say is a 'functioning' patient?
In my book I talk about a number of patients who came in at the first signs of cognitive impairment and responded well to medication, such as Joe, a 73-year-old money manager. After his Alzheimer's diagnosis, we started him on a medication and a brain-stimulation regimen meant to bolster and keep his brain resilient, even as pathological deposits in his brain increased. That was seven years ago, and Joe has continued to work and find utility in his life. He gave up managing his firm but has stayed on as a consultant in a part-time capacity.
You emphasize the importance of early diagnosis. Why is that key?