On her first night home from the hospital, between bouts of writhing in pain, my grandmother stopped to ask me, over and over, “Qu’est-ce que j’ai fait?”: “What did I do?”
My grandmother, Denise, is 82 and in the late stages of Alzheimer’s disease, which means she can no longer form new memories. Late last summer—it’s impossible to say when, exactly—she fell and fractured a vertebra. Immediately, she forgot it had happened. Pain became the fall’s only remnant evidence. It took my family weeks, and two hospital trips, to understand why she’d stopped eating or getting out of bed.
In anticipation of her second discharge from the hospital, I traveled to France to take care of her. When I arrived at the apartment where she lived alone, I was entirely unprepared for how intensely the Alzheimer’s could amplify her suffering.
My grandmother’s throat rattled with every breath. She moaned in her sleep. In childlike tantrums, she kicked her legs and flailed her arms when I tried to get her out of bed to eat. She developed a cough so intense that it sounded, from a room away, like vomiting, and sometimes did turn into vomiting as her body tried to convulse the pain away. She couldn’t tell day from night, and she got lost in her own home, even in her own bedroom.
Every few minutes, she resurfaced to rediscover her agony, resulting in a panic that made her even more vulnerable to its punishment. My grandmother’s pain was undeniable. And yet, somehow, it was incomprehensible to both of us.
In all cases, pain management is a thorny endeavor. “To have pain is to have certainty,” the essayist Elaine Scarry wrote in her 1985 book, The Body in Pain. “To hear about pain is to have doubt.” Helping someone cope with pain requires glimpsing, through imagination alone, the invisible interior of another person’s body—and then accepting that imagined suffering as real and true.
When a patient’s cognitive condition prevents reliable self-assessment, as is the case for my grandmother, our ability to see a person’s pain and treat what we see is even further limited. For caretakers of people with dementia, the riddle of their suffering becomes nearly unsolvable.
Alzheimer’s disease, the most frequent cause of dementia, can undermine the entire process of conveying pain, from perception to communication. A person with Alzheimer’s might express discomfort by wandering, moaning, or refusing to eat or sleep, but the same behaviors might express loneliness, or hunger, or sadness—or they might be symptoms of the disease itself. Asked to choose which emotional expression on a chart matches their current state, a person with Alzheimer’s might, in confusion, point to the face they think they should feel. Dr. Sharon Brangman, a geriatrician at SUNY Upstate, told me about a patient who complained of frequent headaches. Only later did she realize that “headache” was the woman’s metaphor for not being able to remember.
“It just adds to the complexity of taking care of people with Alzheimer’s disease,” Brangman said. “That person may not be able to communicate what’s wrong with them.” Instead of figuring out how to ease the suffering, caregivers are stuck simply trying to understand its source.
And there are a lot of possibilities. In the U.S., an estimated 5.8 million people aged 65 or older have Alzheimer’s—a figure expected to balloon to 13.8 million by 2050 as the population continues to age. One in three seniors dies with dementia. Dementia doesn’t preclude any of the common sources of pain for the elderly, of course—cancer, surgeries, arthritis, osteoporosis, fibromyalgia, ulcers, injuries from falls, and on and on. It does, however, make it more difficult to identify that pain and less likely that it will be taken care of. An estimated one-third of homebound dementia patients and two-thirds of older nursing-home residents with dementia suffer through undiagnosed or unaddressed pain.
“It’s a population that’s just silently suffering,” Todd Monroe, a registered nurse and neuroscientist at Ohio State University, says. “This is not going away. It’s only going to get magnified.”
In addition to the five senses, nineteenth-century German academics believed in Gemeingefühl: a slate of perceivable bodily states “in the most diffuse and general sense”—fluctuating temperatures, rushing blood, lurching organs, hunger, thirst, breathlessness, and physical pressures like pain, itching, and tickling.
These academics explained the mystery of chronic “pain without lesion” as a disorder of Gemeingefühl—an inability to correctly perceive internal sensations. When, in the mid-1970s, the McGill University psychologist Ron Melzack began developing a modern pain assessment still widely used today, he believed that language could ferry pain from this unknowable “borderland between soma and psyche” into the realm of treatable medicine.
After collecting 102 words used by patients at a pain clinic to describe their various agonies, Melzack set out to find a framework within this list that could not only quantify the physical intensity of a person’s hurt but also assess their experience of it. “It gradually dawned on me that the words could serve as a questionnaire that would provide credible evidence of the perceived, subjective qualities of a person’s pain,” he later recalled, “and perhaps throw light on what parts of the brain were involved in producing such feelings.”
Melzack’s invention, the McGill Pain Questionnaire, or MPQ, asked patients to describe their pain using words that fell into three categories: the sensory, the affective, and the evaluative. The sensory category identifies pain’s physicality through qualities such as temperature, intensity, and magnitude. (As virtually everyone knows, pain can prickle, or shoot, or ache, or sting—and each of these sensations can be unlike any of the others.)
Words within the second, affective category capture pain’s emotional impact—whether it exhausts or sickens, terrifies or tortures. The third, final, and most narrow evaluative category assesses the overall episode: Was it annoying, miserable, intense, unbearable?
Within this vocabulary, language can provide “an external image of interior events,” as the essayist Scarry put it. Questionnaires like the MPQ also elevated pain from a handful of physical symptoms to an experience nested in emotion, environment, and expectation. “Pain is not one thing. There’s pain, and there’s the suffering of pain,” says Nancy Berlinger, a researcher at the Hastings Center, a nonprofit bioethics institute. “What you’re feeling, and how you feel about it.”
Sadly, Alzheimer’s irreversibly robs a person of the cognition required to make this conception of pain medically useful. As the disease advances, a person loses the ability to create new memories, use language, control emotions, and critically perceive, analyze, or convey the world around and inside them.
Over the past quarter century, about 30 different tools or methods have been developed to specifically assess pain in people with dementia. Unfortunately, general practitioners who take care of these patients are often not even aware of their existence. (A 2018 survey of 157 GPs in Ireland found while 98 percent of respondents agreed that dementia makes pain difficult to assess, only 10 percent were aware of any dementia-specific pain-assessment tools.) And evidence for their effectiveness often comes from studies with small sample sizes and other sources of biases, critics say.
Among the dozens of options, there is no general agreement on which instrument or technique should be recommended for patients with dementia. “There’s not one single tool that’s determined to be the best,” Monroe, of Ohio State, says. “The science is just not there.”
Part of the problem, experts say, is the uncertainty about how Alzheimer’s disease affects a person’s various pain-perception networks. It’s clear that the disease impacts their ability to assign meaning to pain, but it’s unclear exactly how.
That has led to some cruel assumptions about people with Alzheimer’s. For decades, some caretakers—professional and otherwise—decided it wasn’t worth the hassle of treatment if the patient couldn’t perceive physical sensations or would soon forget any unpleasant episodes. “Anecdotally, I would hear that Alzheimer’s patients don’t feel pain, or they don’t feel it as much,” Monroe says. “I thought, how do you know? We don’t know they’re hurting less. What if they’re hurting more?”
The body processes pain through several interconnected neural networks that help a person feel, describe, understand, and respond to pain. Preliminary research in neuroscience suggests that the major brain regions involved in pain perception and processing still function, albeit differently, in people with Alzheimer’s. In controlled lab settings, there’s no absence of brain activity in the areas related to pain, Monroe says. “If somebody thinks dementia has just messed the brain up so much they don’t feel pain, I can safely say that’s not the case.”
But that doesn’t mean we understand what those differences signify for how those with Alzheimer’s feel and understand pain. We don’t even know how the disease impacts the blood-brain barrier, which could impact the effectiveness of pain medications. “To date, the limited and relatively small studies on pain perception in dementia patients have produced conflicting and even contradictory findings,” Italian researchers remarked in 2019.
This inconclusiveness reflects the practical challenges to dementia brain studies: coordinating caregiver schedules, overcoming transportation issues, getting patients into claustrophobia-inducing MRI machines, and keeping them still enough for imaging. Patients with advanced dementia might not be able to reasonably understand study procedures and provide consent to be experimental subjects. In one 2019 project, five years of active recruitment led by a dedicated recruitment specialist and a full-time research assistant resulted in the successful testing of fewer than two participants, on average, per month.
The result is that most of the existing clinical research has been conducted on participants who are younger, healthier, whiter, and more mobile than the overall dementia population (women and Black and Latino people are the most likely to develop dementia). Any treatments based on these studies might not work as well in patients not represented in the trials—which is to say, most people with dementia. “I don’t think we have enough answers,” Brangman told me. “And it’s not the patient’s problem. It’s our problem.”
Without reliable research to guide them, caregivers are left to rely on their patients’ visible symptoms of untreated discomfort—exclamations like “Ow” or “Ouch,” and movements like massaging, rocking, or hand-wringing.
But even for people closest to the patient, these signals can be easy to misinterpret. Brangman has seen patients become agitated not because of pain or anger, but because of low blood sugar or high blood pressure. They might stop sleeping because they’re uncomfortable or cold or stop eating because they’re lonely.
Rena McDaniel, a family caregiver in South Carolina, told me her mother often complained of chest pain and trouble breathing in the last five years of her life. Doctors told McDaniel it was only allergies, though allergy medicine did nothing to alleviate any discomfort. Some suggested that her mother wasn’t feeling the pain she was describing. One doctor wrote it off as a cry for attention. As it turned out, McDaniel’s mother had been suffering from breast cancer, which had, by then, metastasized throughout her body. She died less than six months after the cancer diagnosis. “We didn’t put two and two together until it was much too late,” McDaniel said. “I still feel guilty to this day for not listening to her instead of the doctors.”
In my own experience, my grandmother moaned through the night even when we gave her the painkillers prescribed for her fractured vertebra. She only stopped when someone was in the room with her. It took time to understand that she wasn’t groaning in pain; she seemed to be moaning in fear. Providers’ misreading of such cues has led to the dangerous mis-prescription of antipsychotics to dementia patients whose behavioral changes are caused not by mental illness but by emotional distress from untreated pain.
“You have to look for other signals that they’re uncomfortable. And it’s not one set thing,” Brangman said. “It takes a lot of intuitive work and careful examination.” Given the tightening squeeze on geriatric care in the U.S., it’s not always possible for practitioners to form these kinds of close, sustained relationships with their patients.
“We’re heading toward a medical emergency,” Joanne Pike, the chief program officer for the Alzheimer’s Association, said last year. In 2016, the U.S. had about one geriatrician for every 2,000 older Americans in need of their service. Less than 1 percent of registered nurses, physician assistants, and pharmacists specialize in geriatrics, according to the Alzheimer’s Association, and even fewer of them are trained to deal with the complexities of dementia. As the number of people with Alzheimer’s more than doubles by 2050, all of these caregivers, Pike warned, “are about to be under siege.”
In the absence of a robust professional workforce, family members, friends, or other unpaid caregivers provide a large majority—about 83 percent—of elderly care. Among them, more than 16 million provide an estimated $244 billion worth of care for those with Alzheimer’s or other forms of dementia. Half of them have no medical experience, but they must nevertheless try to translate subtle facial expressions or unusual habits to doctors and nurses when they suspect that a person with dementia is suffering from untreated pain. “Families deal with this by themselves, and it’s wrong,” Berlinger, of the Hastings Center, says.
Many of the experts I spoke with had relatives or friends who had suffered from these diseases. Berlinger’s father had dementia, as do some of Brangman’s relatives. Monroe’s grandmother battled breast cancer and Alzheimer’s at the end of her life. As caretakers, they felt a powerlessness they’ve tried to dismantle through research or medical care.
Alison Anderson, a nurse practitioner and dementia researcher at Vanderbilt University, watched her mother struggle through early dementia as she began studying the disease. In 2017, Anderson examined existing research and found study after study suggesting that the basics of care—touch, interaction, and the presence of another human being—can help relieve pain in dementia patients.
Luckily for my family, my grandmother now resides in the Alzheimer’s wing of a nursing home, where she is never alone. But when I cared for my grandmother, I found that our moments of communion kept her physical agony at bay. We rooted through boxes of old photographs together, and I distracted her with stories about how I had filled my suitcase with sesame bagels for her. I played guitar while she napped. On the worst of days, all I could do for her was lie down in bed beside her as she whimpered. More than once, we fell asleep holding hands. “Je t’aime,” she’d repeat, finally unburdened. “J’ai pas peur”: “I love you. I’m not afraid.”