Sometimes caregivers ask me what books might help them make sense of what they’re going through. Generally, they have in mind the various guidebooks that offer practical advice. I’m perfectly happy to recommend such books, as I am a few novels and stories that deal specifically with Alzheimer’s and other dementia disorders.

But to my mind, it is not literature about dementia disorders that captures the existential strain, the strangeness, and the uncanny yet still ordinary world of the disease. Rather, it’s those works of fiction that obliquely approach the problems of existence by slightly heightening and distorting reality that seem to distill the caregiver’s experience.

Consider the sad, strange dynamic between what is, in a manner of speaking, a caregiver and a patient in Herman Melville’s "Bartleby, the Scrivener." In this story, an elderly Wall Street lawyer, circa 1853, decides to hire an additional scrivener to copy legal documents. He places an advertisement, and one morning finds on his doorstep "a motionless young man…pallidly neat, pitiably respectable, incurably forlorn!"

At first, Bartleby is a godsend. Quiet, hardworking, and steady, he copies "by sun-light and by candle-light… silently, palely, mechanically." But then, one day, when our narrator asks him to examine a short document, Bartleby replies, "I would prefer not to." The narrator cannot believe his ears. He repeats the request but receives the same response. Because Bartleby betrays no emotion or sign of impertinence, his employer forgives his insubordination. A few days later, he again asks Bartleby to perform a task, and again Bartleby politely declines. "I prefer not to," he says mildly.

Like some dementia patients, Bartleby does not accede but retreats even deeper into his own world.

Any other man, the narrator assures us, would have been immediately dismissed. "But there was something about Bartleby that not only strangely disarmed me, but in a wonderful manner touched and disconcerted me."

Who is this peculiar man who refuses to entertain reasonable requests from his increasingly perturbed employer? We don’t know, because the narrator learns nothing about him except that he has no home. Although Bartleby has now stopped working, he remains in place, staring out the window at a brick wall. The narrator is at a loss. His other clerks are growing resentful, and clients are beginning to wonder. But his pleas make no impression on the man. So he gives Bartleby six days to quit the premises.

On the sixth day, however, Bartleby is still there. Veering between impatience, irritation, and disbelief, the narrator hits upon a desperate solution: Instead of forcibly ejecting Bartleby from his office, he’ll relocate his legal practice to another building, thereby leaving the problem of Bartleby behind.

The narrator leaves and Bartleby remains. Some time later, the narrator learns that Bartleby has been evicted but continues to hang around the building. He hurries over to his old office and pleads with Bartleby to leave. He even offers to take Bartleby home with him, but Bartleby prefers not to leave. What does the narrator do? He decides to take a vacation; he simply cannot understand or deal with a man who resolutely prefers not to take care of himself.

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Although the narrator may not know what to make of Bartleby, there has been no shortage of critics who think they do. For some readers, Bartleby is a stoic victim of capitalism; for others, a rebellious artist victimized by a bourgeois culture; for still others, a Christlike figure sent to redeem his worldly, materialistic employer. Or perhaps he’s a symbol of loneliness in an absurd and meaningless universe, whose presence mirrors the isolation in American society?

In our contemporary, diagnosis-ready culture, Bartleby would be assigned a mental or neurological illness. Surely such affectless, passive, noncommunicative behavior signals a schizoid personality disorder or fits somewhere on the autistic spectrum. But isn’t this also a way of rendering a mystery more palatable by using terms we’re familiar with?

While many readers and critics like to see themselves in Bartleby, I see myself as the hapless narrator. Nothing quite brings me back to my caregiving days so viscerally as the lawyer’s desperate and futile efforts to help the pale scrivener. It is the narrator’s desperation that produces their comically one-sided relationship, since Bartleby neither appreciates his concern nor asks for it. The narrator may have position and money, but it’s Bartleby who seems in control.

For me, their dynamic is not that of a powerful employer and a vulnerable worker but that of a well-meaning "normal" mind hopelessly trying to make sense of a mind utterly different from its own. The narrator is so sincere, so impassioned, so intent on getting to the bottom of Bartleby’s behavior that he doesn’t recognize the futility of his own behavior. And even when he grasps that his questions will always be met with Bartleby’s invincible "I prefer not to," he persists.

Is this any different from how most caregivers behave? Even when we know there’s no good answer, we continue to ask our patients: Why don’t you listen to me? Why are you hiding the toilet paper? Why are you picking up garbage on the street? Why do you keep wearing the same dirty sweater when I put out a clean one?

Because "Bartleby, the Scrivener" is by turns comical, absurd, and sad, it may feel disturbingly familiar to caregivers. Don’t we, as caregivers, vent our anger despite realizing that a loved one has already forgotten the reason we’re upset or cannot follow what we’re saying? Nonetheless, like Melville’s narrator, we also persist. How fitting, then, that Melville’s narrator, not unlike the caregiver, is in some ways needier than the person he’s trying to help.

Even the fact that he’s trying to do good makes it hard for him to see how ineffectual he is. He chases after Bartleby not just for answers but also for validation, connection, and ultimately forgiveness. As for those critics who believe the narrator is inflicting tyrannical social norms on poor Bartleby, they’ve probably never found themselves in a comparable situation. It’s incredibly hard to rescue people from themselves without trying to impose one’s own reality on them.

Like some dementia patients, Bartleby does not accede but retreats even deeper into his own world, leaving his employer both frustrated and sympathetic. Bartleby, the employer muses, must be terribly lonely; and imagining the depth of such loneliness, he can’t help feeling a "fraternal melancholy."

But is Bartleby lonely? Who knows? All we know is that the narrator’s assumptions reveal more about him than about the scrivener. Most of us, of course, assume the part of the narrator because our mind, like his, is in the deduction business. That is, we are always looking for reasons, motivations, and beliefs in order to make sense of people’s behavior.

How fitting, then, that Melville’s narrator, not unlike the caregiver, is in some ways needier than the person he’s trying to help.

This deduction business is so serious that it begins very early in our development. Consider what happens when we stick out our tongue at a baby; the baby usually sticks her tongue out at us. Babies do this because our "mirror neurons" literally mirror the behavior of others. If we see someone pick up a cup of coffee, our mirror neurons automatically represent this movement to our brain as if we were picking up the coffee ourselves. The mirroring impulse or "mimicry system" is, in fact, our brain’s first step to understanding other people. We simulate people both with our brain and with our body.

We clench when someone experiences a shock and we cringe when others are humiliated. We literally feel other people’s pain, because our automatic nervous systems react to their suffering. Our faces, though we may not realize it, are busily copying the reactions of others. (Tellingly, people injected with Botox are not as good at detecting and understanding emotions, precisely because their facial muscles cannot imitate others’ expressions.)

And if we take a painkiller, which, as we know, helps alleviate social pain, we become less empathetic upon seeing other people’s manifestations of rejection or discomfort. And this automatic mirroring, which enables empathy, may actually become problematic for many caregivers.

One caregiver, whom I’ll call Shelley, told me she can barely look when her mother tries to read a book or magazine. Her mother, once a brilliant teacher and voracious reader, now seems lost and sad when she turns the pages. "I can’t imagine what my mother is feeling," Shelley told me a few times. She really cannot imagine it. Nonetheless, she can’t help trying to feel what her mother is going through. The instant she perceives her mother’s sadness, her mirror neurons not only simulate it, they also cause Shelley to assume they’re sharing the same sadness.

She is far from the only one to feel what psychologists call "emotional contagion," which is a by-product of our mimicry system. While empathy seems essential to good caregiving, it can also have, as the psychologist Paul Bloom notes, a surprising drawback. Because egocentricity is "embodied," our understanding of other people begins with ourselves. The pain we automatically feel in response to what we perceive as other people’s pain can fool us into thinking that we under- stand that pain. But the truth is, we don’t really know.

Shelley may believe that she understood what her mother was feeling, but was she right? Was her mother grieving for herself in the same way that her daughter was? To what degree did she have the capacity to appreciate what she had lost? And how long would it be before she moved on to feeling something else while her daughter was still mired in sadness?

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Excerpted from Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain by Dasha Kiper. Copyright © 2023. Published by Random House, an imprint of Penguin Random House, LLC.