Living Well With Alzheimer’s

Living Well With Alzheimer’s.

Seven years ago, Joe, a 73-year-old man with a patrician bearing, came to see me at my Manhattan office with his stylish wife and their grown daughter. (I’ve changed his name to protect his privacy.) A money manager in charge of more than a billion dollars in assets, Joe could tell that his memory was fading. Transactions that were once easy for him had started to cause him trouble. “I was born with an extremely good brain, and I’ve utilised it very well,” Joe said. “But in the last couple of years or so, I’ve been forgetting. I watch a movie and lose the thread of it. I drive right past my destination. I used to have a fantastic vocabulary, and now I search for words. I think my brain cells are dying.” Attesting to his eloquence, Joe summed up by saying, “I see a consistent failure in cognition.” His astute internist was concerned that Joe was developing some type of dementia. After a thorough evaluation and laboratory work-up, it turned out that his internist was right—Joe had Alzheimer’s disease.

Many people have the idea that Alzheimer’s is a one-way street to inexorable decline. They believe that treatment is ineffective, which often discourages them from seeking a diagnosis when facing memory loss. But the reality of the disease is very different. Having worked as a neurologist for over 20 years, I see Alzheimer’s not as a single disease but as a spectrum disorder—with a wide range of symptoms, responses to treatment and prognoses. Early diagnosis and treatment has kept many of my patients stable. Alzheimer’s is still poorly understood, and in thinking about it, most of us tend to focus on severe cases—people in the advanced stages of the illness who may be mute and confined to a bed or wheelchair. But that is just a fraction of patients on the Alzheimer’s spectrum. Most are still living in their communities, engaged in normal, everyday activities. We have not yet learned to associate the disease with functioning, independent individuals, but they are, in fact, the majority.

Patients and families who are worried about the potential ravages of Alzheimer’s or another form of dementia often make decisions based on fear rather than on facts. Physicians and other health caregivers are sometimes subject to such emotions too. I’ve been as guilty of this as anyone else. Confused and unsure about what to expect, patients often lose confidence and begin to doubt their abilities, withdrawing into themselves. In permitting this to happen, we are doing our loved ones and society a disservice, depriving those who suffer from the disease of years of pleasure, purpose and fulfilment.

Joe did not want this to happen to himself. He had several things in his favor, all associated with a better prognosis. His subtype of Alzheimer’s—with mild language dysfunction, moderate memory loss, and excellent visuospatial, language and life skills—suggested that he would respond to treatment. Also in his favor: He was still working and keeping his brain active. He was still handling the demands of his job, which meant that the pathology was early and not yet significantly affecting his functioning. He had a supportive family and social network, keeping him communally engaged. All of this spoke to his excellent “cognitive reserve,” which kept his brain resilient. He also had good “brain reserve.” His MRI revealed a healthy brain. He exercised vigorously twice a week, keeping his heart healthy and increasing blood flow through his brain, which keeps it more robust. These two types of reserve—cognitive and brain—help to stave off the effects of Alzheimer’s: the plaques and tangles that kill nerve cells and cause networking dysfunction. Joe was motivated to seek any and all available treatments, both those approved for Alzheimer’s and those that were still “off-label” (approved for use in other illnesses) but seemed promising. We started him on a combination of approved medications, to increase levels of a brain chemical called acetylcholine that becomes depleted in Alzheimer’s and to amplify the efficiency in communication among nerve cells. We also started a brain-stimulation regimen, including exercises like word-retrieval games, done one-on-one with a psychologist, and targeted, noninvasive magnetic pulses to alter brain activity. Our goal was to capitalise on Joe’s numerous strengths and to buttress capacities where he was showing deficits.

Joe is 80 now. I recently got a call from an outraged cardiologist whom Joe had seen for a problem unrelated to his Alzheimer’s. “What do you mean Joe has Alzheimer’s?” he asked. “He is functioning perfectly! There’s nothing wrong with him. You should redo his tests. I do not believe this man has Alzheimer’s.” As I told Joe’s cardiologist, Joe had had several extensive work-ups over the seven years I’d been treating him, including spinal fluid analysis, and all of them were positive for Alzheimer’s. In neurocognitive testing over that span, Joe showed remarkable stability in most areas, such as visuospatial skills, and even improvement in others, such as language, although his memory remained poor. Some may consider it heresy to speak of improvement in Alzheimer’s, but Joe unequivocally showed a positive response to his treatment. Joe had more insight into his cardiologist’s irate reaction to the diagnosis than I did. When I recounted the conversation to Joe, he said, “My cardiologist’s wife died of Alzheimer’s. She spent her last year in a nursing home. He is old school and doesn’t understand or believe that some people with Alzheimer’s do well with the proper treatment.”

Joe’s situation will be familiar to physicians with experience in memory disorders. Some patients do, in fact, improve with treatment, and many patients stay stable. This makes sense once you recognise that Alzheimer’s is a spectrum disorder, with many subtypes and outcomes. Joe continues to work and to enjoy his days; he now manages his firm part-time. He has begun to spend more time in Florida, but that feels natural to him at this stage in his career. Not very long ago, Joe and I had a heated discussion about the stock market—and I am delighted to report that, despite my best efforts, I lost the argument. He is living proof that an Alzheimer’s diagnose is not necessarily a barrier to leading a life of fulfilment and cognitive engagement.

Credit: Dr. Gayatri Devi is director of Park Avenue Neurology in New York. This essay is adapted from her new book, “Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias” (Workman); for The Wall Street Journal 3 November 2017.