I asked Irina whether anyone in the family spoke English.
“His daughter,” she said. Her face formed a question, I nodded, and she pulled the chart from me to her, flipped to another section, and put her finger on a phone number. I dialed.
A woman answered. “Alyo.”
With Irina on standby for translation, I explained who I was. “Oh, hello, Doctor,” the woman said in English. “Thank you for taking care of my father.”
I gave Irina the thumbs-up so she could return to her own work and asked Svetlana to tell me about her father. Dimitri had been an engineer in the Soviet Union, she said, and her mother was his second wife. They had been married forty-one years and had been in the United States for eight. I asked her about Dimitri’s recent health and care, and she described a fairly typical scenario for a person with late-stage Parkinson’s. He didn’t move or speak much, was confused and incontinent, and lately had eaten little and spent most of his time asleep. I confirmed his other symptoms, diagnoses, and medications and asked if there was anything else I should know.
“Oh, no,” she said. “I think that is everything.”
This is where the standard medical interview usually ends, but I had more questions. In geriatrics, the goal is to tailor care to the patient’s unique amalgam of health status, abilities, values, and care preferences, no matter how healthy or sick they are. I don’t always get all this information at the first meeting, but Dimitri wasn’t eating or drinking much, and I worried we might need answers to key questions at any moment. Even if he wasn’t dying, I had to know more about him to make him comfortable in his new home.
How people address their lives and deaths varies widely and is deeply personal. I couldn’t discuss Dimitri’s nursing home or end-of-life care with his family unless they knew how sick he was.
“Can you tell me what your understanding is about your father’s condition?” I asked, and quickly learned that Svetlana and her mother appreciated the severity of Dimitri’s situation. I hoped she also had a sense of what treatments he would and would not want at this stage of his life.
“Did your family ever talk about what would be most important to your father if he could no longer speak for himself?”
There was a noise in the background on Svetlana’s end of the line, and I wondered whether her mother was in the room waiting to hear about the conversation in Russian as soon as we were through. “No,” Svetlana said. “We don’t talk like that.”
This is often the case, so I moved on to proxy questions, which sometimes help families and care teams get a sense of a patient’s preferences even if they were never explicitly discussed. Unfortunately, Dimitri’s parents and grandparents had all died young and fairly quickly, from what sounded like heart disease or infections.
Because it mattered so much, I tried another tack. “Did your father have any friends or family members who had Parkinson’s or dementia or a big stroke?” I asked. Dimitri might have commented on the last years or months of their lives, either positively or negatively, in ways that could guide us.
“Maybe,” Svetlana said finally. “I’m not sure. I have to ask my mother.”
I told her that would be very helpful and gave her my phone number. She began thanking me for my call.
“Just one more question,” I said. Some people in Dimitri’s condition die quickly; others live for years. I wanted to get a sense of how quickly Dimitri was declining. I asked what her father had been like two weeks earlier, and two months, and six months, and a year.
Svetlana was only partway through her answer when I stood up and grabbed a pen. Five minutes later, I thanked her, hung up, and immediately called Dimitri’s neighborhood pharmacy to ask for the dates of first prescription for each of his medications. When I hung up, Irina, who missed nothing on her unit, appeared out of nowhere at my side.
“What?” she said.
“He was perfectly healthy a year ago. Mind, body, everything. Six months ago, he was still walking, talking, reading the newspaper. This may all be drug-induced.”
“Oh my God.”
I stopped eight of his medications and tapered the other two. I also asked the nurses to check him frequently over the next few days. I wanted to know sooner rather than later if I was wrong and to make sure he remained comfortable no matter what.
By the end of the week, Dimitri could sit up. He began talking, quietly at first, but each day his voice grew stronger and louder. He ate more and moved better. I ordered physical therapy. His blood pressure went up, and I started him on a different, safer medication. The pharmacy records had been consistent with Svetlana’s story of her father’s decline. He’d been the victim of a “prescribing cascade.”4 It started when he was given a new blood pressure pill, a good and common one, but—as is the case for almost all drugs— one with side effects. In Dimitri, it had precipitated gout. Instead of changing medications, his doctor treated the gout with a strong anti-inflammatory drug that caused heartburn, earning Dimitri another new medicine. And so it went, each side effect treated with another medication that caused another side effect that was treated with yet another medication, and so on. Just as bad, even when his problems got better, as his gout had, the medications were continued. In just a few months, he’d gone from healthy to bedbound.
Drug cascades like Dimitri’s are not the primary causes of Parkinson’s, dementia, frailty, or disability in older adults, but it’s likely a fair number are never diagnosed. Every geriatrician I know has stories like this one. Some other types of clinicians probably do too. Any doctor or pharmacist who looked thoughtfully at Dimitri’s medications and didn’t use his old age and apparent advanced illness as an excuse to forgo obtaining a detailed medical history would have come to the same conclusion I did. In a health care system where time is the scarcest resource and care is fragmented among doctors without a clear mechanism for designating a recognized team captain, new symptoms are too often attributed to age and disease rather than to the care or drugs that actually caused them.
Six weeks after his admission to the nursing home, we transferred Dimitri to the assisted living unit. The first time I passed him in the downstairs hallway, I nearly didn’t recognize him. He wasn’t even using a cane. Although he could have moved home, it seemed that he’d found a new life that suited him. He began painting, was elected to the Residents’ Council, and acquired a new female friend. Since Dimitri was still married, this caused a small scandal, but he didn’t care.
CONFUSION
Before I became a doctor, I thought senility was a normal part of aging. Live long enough, I figured, and memory fails. I didn’t realize that senility was the lay word for dementia, and this syndrome had more than seventy medical causes. Nor did I know that as long as you didn’t contract one of those conditions, you could live without dementia into your eighties, nineties, and hundreds. These days, we hear much more about dementia and its most common type, Alzheimer’s, but twenty years ago, that wasn’t the case. Still, I should have known better based on a sampling of old people in my own family. Granny, my great-grandmother, lived into her nineties and at no time was there anything wrong with her mind. Ditto my maternal grandfather, who died at age eighty-six, and my two grandmothers, who died in their seventies. Incredibly, despite personal experience to the contrary, I thought dementia and aging were synonymous.
I wasn’t the only one with that erroneous belief. The word dementia appears nowhere on a report from the Centers for Disease Control (CDC) listing the top ten causes of death for all ages in the United States from 1933 through 1998. The word Alzheimer’s showed up on that listing for the first time in 1994, as the eighth leading cause of death among women. It did not appear on the men’s or combined lists until 1999.
The explanation for its appearance late in the twentieth century was not, like AIDS or Zika, that it was either a newly discovered pathogen or newly affecting our populace. Nor can Alzheimer’s ascendance be entirely a result of people living longer, though that surge cle
arly affected not only disease prevalence but public and medical awareness of it. Part of the change reflected the fact that doctors who fill out death certificates are products of their culture and training. In their civilian lives, if they heard about the topic at all, they heard of senility, not dementia. In most medical schools, dementia warranted only a passing mention. In textbooks, it wasn’t featured nearly as prominently as similarly common, life-altering diseases. That might have made sense if it was a normal part of aging, although one could argue that any condition that affects a person’s body, function, and well-being is a health issue.
Conditions that doctors have not been trained to adequately evaluate or manage are unlikely to appear on death certificates. Certifying clinicians, and even CDC scientists, also may have believed that dementia and aging went hand in hand, that it didn’t matter in the same way as heart disease and cancer.
Since 2007, Alzheimer’s has been the sixth leading cause of death in the United States, and for people eighty and over, it’s now in fifth place for men, third for women. But even that isn’t quite right. For the most part, the causes of death that have led the CDC listings for the last century are broad categories of disorders such as “diseases of the heart,” “malignant neoplasms,” and “accidents” (unintentional injuries). As a result, many diseases fall under each heading, and the numbers of deaths counted are high. If we list heart attacks, heart failure, arrhythmias, and other cardiac conditions separately but cancer as a single entity, for example, heart diseases would not top the list; cancer would. But cancer would also drop lower down the list if we separated out the different types—listing breast, lung, skin, prostate, colon, blood, and each of the many others individually. Yet the CDC considers Alzheimer’s a separate disease on its own, rather than grouping the many dementias together. A more taxonomically consistent approach would be to have a dementia category that included vascular, Lewy body, frontotemporal, and all the other dementias. This matters because where a condition appears on this and other lists affects all aspects of medicine—from doctor training to money for research and departments within health systems, as well as the public’s imagination and our political and social priorities.
Serious disease always transforms. My father looked like my father until his death at age eighty-four, but in his last years he acted less and less like the dad I had known for the first forty-eight years of my life. That change in a person with dementia is why the condition is sometimes described as a double loss for families. First, the recognizable face and body become those of an unfamiliar character, and then in death, often many years later, everything is gone. In Elegy for Iris, John Bayley, who cared for his wife, the writer Iris Murdoch, as she advanced into the late stages of dementia, described the years of her illness this way: “Alzheimer’s is, in fact, like an insidious fog, barely noticeable until everything around has disappeared.5 After that, it is no longer possible to believe that a world outside fog exists.” It seems intentionally unclear whether Bayley is speaking for his wife, for himself as her caregiver, or for them both.
My father did not live into those final stages. Until the last year or two of his life, he could still fool people who didn’t know him. Once, as he and I sat in an emergency department cubicle with my mother, who, light-headed from a stomach bug, had fainted and hit her head, the nurses had my father sign papers he could no longer fully understand. Later that day, when it was clear the cut on my mother’s head was the worst of her injuries, one of the emergency physicians tending her—a man who had won multiple awards for his thoughtful, knowledgeable teaching—said the paperwork would take time and I should feel free to go back to work. Apparently, he hadn’t put my father’s vague, sometimes irrelevant comments and his appearance—sloppy without my mother’s oversight that morning—together into a likely diagnosis. I had to tell him that I needed to stay for my father’s sake. Without help, my father was unable to find the bathroom, or the cafeteria one floor up, or his way back to my mother’s cubicle.
Dementia’s early stages can be subtle, discernible only to the trained or watchful eye. In describing her mother in the months leading up to an Alzheimer’s diagnosis, the French writer Annie Ernaux says this:
She had changed. She started laying the table much earlier … She became irritable … She was inclined to panic if she received a circular from her pension fund … Things started happening to her. The train she was waiting for on the station platform had already left. When she went out to buy something, she discovered all the shops were closed. Her keys kept disappearing … She seemed to have to brace herself against invisible threats.6
The most common dementia, Alzheimer’s disease is, by definition, gradual in onset. Symptoms generally begin several years prior to diagnosis. Early on, its manifestations are subtle and often attributed to old age or inattention. “I’m having a senior moment,” people say of their normal brain’s normal lapses, laughing and at the same time terrified. Americans fear dementia7 more than any other disease except cancer. Aging changes the brain, and diseases cause dementia. People with dementia struggle to do things in their lives they previously found easy: managing finances, handling their medications, shopping, cooking, driving. Slowed processing, delayed recall, and greater sensitivity to distraction are inconveniences, not major impairments. They are fundamentally different from not being able to roughly copy a simple drawing or name more than a few animals when given a minute to think about it. An older person with a healthy brain may do things more slowly or differently for reasons that have more to do with their hands, their eyes, or their aging brain, but they can do them.
A lot of Americans have dementia: 5.3 million in 2015, which is four and a half times more people than have AIDS—and some estimates suggest that only about half the people with dementia have been diagnosed.8 While most older adults do not have dementia, age is a key risk factor. Over 80 percent of people with dementia are over seventy-five years old. But just 14 percent of adults in their seventies or older have dementia on average. Dementia is more common among black Americans than whites, with Latinos falling somewhere in between, and it’s least likely in Asian Americans, but there is significant variability among ethnic group subtypes.9 Even after a diagnosis of Alzheimer’s, the average person lives eight to twelve more years and dies of heart disease or cancer, just like the majority of their peers. Dementia is almost always progressive, but sudden and significant drops in function are usually from drugs, infections, or strokes and can be treated. There is no single truth with dementia, and the reality of living with it is complex, fraught, funny, infuriating, gratifying, tragic, and profound.
Until recently in medicine, even though patients with dementia needed care from most types of doctors, only neurologists, psychiatrists, and geriatricians learned much about the disease during their training, and what each specialty learned differed. Neurologists prioritized diagnosis by brain pathology and treatment with medications. Psychiatrists attended to dementia patients’ anxiety, depression, and psychotic symptoms. And geriatricians, new in medicine and few in number, focused on managing a patient’s health, social situation, and physical environment to maximize their and their caregivers’ well-being. These days most doctors know something about dementia, though it still falls far below the standards for other common, devastating diseases.
Studies published at regular intervals from the 1980s on have found that doctors frequently miss the diagnosis of dementia,10 at least until its middle stages. At the University of California, San Francisco (UCSF), where I work and have spent most of my career, just 3 percent of patients over age sixty-five were documented in 2018 as having some kind of cognitive impairment11—way lower than you’d expect in patients at that age. Recent research has asked why that is. Some clinicians don’t have the relevant knowledge or skills. Others report they suspect it in patients but feel there’s no point in making the diagnosis, since they have little to offer by way of treatment. Still others admit to feeling they lack both the time and
wherewithal to make a diagnosis so existentially abstruse.
Dementia forces us to think about what makes us human. If an accurate definition included people with dementia along with the rest of us, we might find it easier to cope with a disease that currently strips the living of their basic humanity. We also might have broader notions of what counts as “medical” treatment, more clinicians with the necessary care skills, and greater flexibility in our health system to respond to highly varied patient needs.
In 2010 I was asked to give the “Geriatrics Year in Review” lecture for a continuing education course. Each presenter had to select and interpret the most important published studies in their specialty from the previous twelve months.
The day after I submitted the brief initial description of my talk, the course director told me there was a problem. “You can’t do dementia. Somebody is already giving a whole talk on that.”
The somebody was a prominent dementia researcher and head of a major memory institute. Under his leadership, a small program had become a vibrant center for research, teaching, and clinical care.
“I bet we’ll be talking about different things,” I replied, reasoning that neurologists focused on science, while I would be discussing clinical care.
The course director wasn’t convinced. “It’s really important that we don’t have the same material covered twice.”
Given our different emphases and the fact that over seventeen hundred articles had been published that year on the dementia, I suspected we could avoid duplication.
“How about this?” I offered. “I’ll ask for his outline or slides, and if there’s any overlap, I’ll take dementia out of my talk. But if we’re covering different studies, it stays in.”
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