Courtesy Gayatri Devi, M.D., Kseniya photography
En español | 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.
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?
Like any chronic illness, the earlier treatment is started, the better the long-term prognosis. But memory loss can be attributed to a number of conditions and not just from dementias like Alzheimer's — it can come from hormone imbalance, side effects from medication, strokes or even normal aging.
Identifying the causes through a medical evaluation means those conditions can be addressed, so those concerned about having Alzheimer's will know one way or the other. For example, I put one patient, Grace, who was 58, on estrogen; at the time, research showed that women benefited from the use of it in the treatment of Alzheimer's. Six months later, she came in to tell me she was “cured” and was no longer experiencing problems. Reexamining her files, I realized her cognitive changes could have been caused by menopause — she had gone through it later than most women.
How has the medical community responded to the idea of Alzheimer's as a spectrum disorder?
In 2012 the Alzheimer’s Association and the National Institute of Aging came out with a new definition of Alzheimer’s as a spectrum disorder, basing their definition on a combination of clinical signs and the presence of biological brain markers such as plaque deposits. They designated three stages: preclinical, a stage with the presence of plaque but no clinical symptoms; mild cognitive impairment, a stage with some objective symptoms and no functional issues; and Alzheimer's as the third stage. This corroborated views I've held for over a decade, and more research about it will come to light. But it was a step in rethinking Alzheimer's.
Once a diagnosis is made, how do you usually proceed with treatment?
For each stage I take a multipronged approach, using both FDA-approved and off-label treatments, as well as addressing lifestyle changes. I find that diet as well as aerobic and weight-bearing exercises can be important to help to keep the brain resilient from plaque-driven brain-cell loss and can improve a patient’s level of functioning. Preventing other things that can accelerate progression, such as high blood pressure or diabetes or depression, is also important.
What advice do you give to people trying to decide if they should stay at the office or retire after a diagnosis?
I am supportive about working. I’m not one of those people who think someone with Alzheimer's should quit his or her job. After all, we allow people with brain tumors to keep working, whether they're in chemotherapy or not; we allow people with far more conditions of impairment to work. This is our old-fashioned thinking: When we hear that someone has Alzheimer's, our brains immediately fast-forward to a patient in the last stages. We immediately make them incompetent by virtue of their diagnosis. That’s crazy! Quitting a job because one has been diagnosed with Alzheimer’s disease isn’t a given anymore.
Still, you advise patients to carefully consider whether or not to reveal a diagnosis of Alzheimer’s to friends and even to family. Why?
People are of two groups, ones who don’t want to tell anyone and those who want to tell everyone. The ones who feel “I’ve got to tell people” may not realize how much prejudice there is, but you notice it in the ways that friends stop calling you or don’t invite you over as often or look at you strangely. It’s subtle. Work associates begin to doubt your capabilities, and normal lapses can be unnecessarily attributed to the disease. Yet if someone is very skilled at their job, their work becomes an overlearned memory, which means the skills are stored in multiple areas of the brain that are affected much later in the course of Alzheimer’s.