Preserving the Mind

Preserving the Mind

In How Not to Die, the joy over the miraculous recovery of my paternal grandmother from heart disease stood in contrast to the horror story of my maternal grandmother’s descent into Alzheimer’s disease. When our own mother began to show the same symptoms, my brother and I braced ourselves for inevitable years of grief and loss. The cruel irony of fate—that my father had to battle Parkinson’s disease, trembling hands in a photojournalist—was compounded by the mockery that my mother was losing her mind. She had college degrees in English and chemistry, straight A’s in nursing school, and library books were piled all around her. First she could no longer read, then no longer write, and finally she lost herself. Given the family history, the neurologist we took her to first offhandedly diagnosed Alzheimer’s. The second and the third did too. But the fourth neurologist—who identified an early symptom I had missed, namely urinary incontinence—pointed to the possibility of a rare normal-pressure hydrocephalus, an abnormal accumulation of fluid in the brain.

There are only a few kinds of reversible dementia. One is vitamin B12 deficiency, medication side effects are a second, and a third is normal-pressure hydrocephalus. Could that be it? I had a diagnostic lumbar puncture performed on her. Some spinal fluid was removed to see whether the symptoms changed. When I laid her on the exam table, she couldn’t walk, could barely speak, and didn’t know who I was. The fluid dripped from the needle in her back into a cup, and then the lights came back on for her. After a few minutes my mother was back, walking, talking, and hugging me. She had been there the whole time, but the excess fluid had incapacitated her brain. It was and will probably forever be the happiest moment of my life. But in the following hours, as the fluid built up again, her mind retreated back into the darkness, like Charlie’s in Flowers for Algernon. Now that the diagnosis was confirmed, surgery was scheduled, a shunt was placed into her brain to permanently drain the excess fluid, and then she was back with us (and at the library).

The moral of the story is that you should identify all possible treatable, reversible causes before accepting a final diagnosis.

Not in One’s Right Mind

Today, dementia is one of the most urgent challenges for health care. The most common keyword in the research literature on healthy aging is Alzheimer’s. Dementia is one of the fastest-spreading epidemics, affecting one in ten people over 65 and up to 40 percent of people over 85. “Harmless forgetfulness,” for example often misplacing your keys, is even more common. Dementia is of course much worse, because it interferes with everyday activities. You don’t just forget the appointments you have in a day; you also forget the appointments you attended that day.

Alzheimer’s is the most common form of dementia and perhaps the most feared disease associated with growing older. In my practice, I dreaded making this diagnosis even more than a cancer diagnosis. What made it so difficult for me was not only the knowledge of the psychological burden awaiting the patients, but also the emotional burden that was coming for the family. The Alzheimer’s Foundation of America estimates that each year more than 15 billion unpaid hours are provided by more than ten million friends and family members caring for loved ones who may not even recognize them anymore. Alzheimer’s is the most expensive disease in the United States and in large parts of the industrialized world.

There is still neither a cure nor an effective treatment for this disease that inexorably leads to death, despite billions invested in research. Over the last decades, more than 100 000 research articles on Alzheimer’s have been published. Even so, to date, only a few clinical advances have been made in the treatment and understanding of the disease. And a complete cure? That is probably impossible, because due to the severe damage to their neuronal networks, Alzheimer’s patients will presumably never regain lost cognitive abilities. Once nerve cells are dead, they cannot be brought back to life. Even if drug manufacturers should succeed in stopping the disease’s progression, for many patients the damage has already been done, and their personality may be lost forever.

Alzheimer’s can only be definitively diagnosed after death, when autopsy finds the characteristic brain pathology with microscopic plaques and neurofibrils. Nevertheless, some people who die with dementia have an intact brain, and others who die with normal cognitive abilities show all the characteristic Alzheimer’s features. In fact, 39 percent of the brains of 90- and 100-year-olds without dementia met the criteria for Alzheimer’s pathology, so the mystery persists beyond death. In about 30 percent of people clinically diagnosed with Alzheimer’s, the diagnosis is wrong.

After Alzheimer’s dementia, vascular dementia is the second most common form, accounting for 15 to 20 percent of all dementia cases. It can develop after a major stroke or after many small ones. Sometimes a blood clot briefly blocks only a tiny artery—not long enough to be noticed, but long enough to kill a tiny part of the brain. These “silent strokes” can accumulate and slowly diminish cognitive ability until it becomes full dementia. Yet despite medicine’s attempt to divide the different forms of dementia into separate categories, most brain autopsies of dementia patients find multiple pathologies—for example, both Alzheimer’s and vascular lesions.

The Myth of the Myth of the Myth of Senility

Before Covid-19 made it the seventh most common in 2020, Alzheimer’s disease was the sixth-leading cause of death in the U.S. Between a dementia diagnosis and death lies an average of about five years. Though you don’t die of dementia itself, it can directly lead to life-threatening complications, such as aspiration pneumonia due to swallowing problems, at which point the family may decide not to treat it anymore. The good news: Dementia is not an inevitable consequence of aging.