A Short Story Changed How I Care for Persons Living With Dementia

“A woman goes to her doctor to have a prescription renewed. But the doctor is not there. It's her day off. In fact, the woman has got the day wrong, she has mixed up Monday with Tuesday. This is the very thing she wants to talk to the doctor about.” [1] These opening lines of Alice Munro's “In Sight of the Lake”—a short story about Nancy, an elderly woman worried her mind is “slipping a bit”—pull me out of my experience as a dementia specialist and into the experience of a person living with dementia. The practice of medicine relies on facts as best as we can gather and assess them. Narratives, however, can have a role in shaping medical practice as well. This story, (Because, even after publication, Munro often revised her stories, several versions are in print; this essay is based on the publication in the collection Dear Life1) a fiction none-the-less, is one such example. It has had a great influence on how I think about the care of persons living with dementia. Nancy's visit to the doctor's office launches her on a journey. It begins the day after the visit to renew the prescription, when an unnamed “office girl”—Munro's words—calls Nancy. The prescription is ready to pick up and an appointment has been made with a specialist to look into her “mind problem.” Nancy rejects the term. “It isn't mind. It's just memory.” The reader can hear the girl's dismissive shrug as she replies, “Whatever. The specialist deals with elderly patients.” Nancy parries with a quip: “Elderly patients who are off their nuts.” Still, she accepts the referral to the specialist, located, the girl explains, in the village whose name Nancy hears as “hymen.” One more quip. “Oh dear,” Nancy remarks, “a marriage specialist.” Afraid she might struggle to find the doctor's office or, arrive late and flustered, and so create a bad impression, Nancy makes a plan: On the eve of her appointment, she sets off in her car to become comfortable with the route from her home to the Elderly Specialist's office in the village of Highman. There, she sets out to find his office, but in her walk about the village, she struggles to locate the office of the doctor whose name she has forgotten. She also struggles over whether to ask for help. Finally, she relents and asks a man for directions. With these, she resumes her journey. Right from the opening—Nancy's mix up of the dates, the very thing she wants to talk to the doctor about—we're drawn into Nancy's conscious experiences. Consciousness is more than simply being awake and alert. The term describes our capacity to experience the world. It is what happens when cognition, perceptions and feelings assemble into a subjective experience. Consciousness ought to matter to doctors who care for persons living with dementia, especially geriatricians. A conscious creature has a mind, and dementia is widely understood as a condition where mind is incrementally transformed, even lost. No wonder mind is one of the “four M's” of geriatric medicine. “Crazy doctor,” “elderly patients off their nuts,” “oh dear, a marriage specialist,” “It isn't mind. It's just memory”—Nancy's wit, word play and quibbles with terms might be interpreted as her minimizing or trying to deflect her problems. They might, but they also reflect her experiences struggling to live with dementia. She is intensely aware of her problems and fears they will cause stigma and a loss of connection with people. I think of her pre-visit trip to find the doctor's office as yet another example of the supports a patient uses to minimize the impact of their memory loss. Other cognitive supports are notes and white boards (I once found a patient's handwritten note “Aricept—for memory lapses.”). As long as these work, they're why the common answer to my question “How are you are doing with daily tasks?” is “I'm doing fine.” For years, I made little effort to probe this answer. It was proof enough: The patient lacked awareness of their problems with day-to-day life. But then I read this story. It got me thinking. What is mind, and how do we assess it? Here's what I discovered. “I'm doing fine” may in fact signify a lack of awareness, but it may not. How do I discover whether the patient is like Nancy, aware of the changes in how their mind functions? To answer this, I assess the patient's conscious experiences. I routinely ask a question taken from philosophical inquiries into consciousness: What is it like to be you? [2] Something we conclude has a ‘feeling of what it is like’ is a conscious entity. I think my dog Moby has a feeling of what it is like to be. I don't think that ChatGPT does. In answering this question, many patients recount vivid experiences like Nancy's confusion of time and her struggles to find her way around Highman. Following up with How do you cope with those experiences? often reveals an important finding. They don't know how they'd mange without their notepad, smartphone, geotracker, pill box and especially without the person we call a caregiver. With these mind supports in place, they're in fact “doing fine.” This is an entre for an important, albeit difficult conversation. What kinds of supports might they need when the supports they have in place are no longer working. A critical reader should rightly ask, there are many fictional accounts of persons living with dementia. What's special about this story? What's special are the events that ensue after Nancy resumes her journey. They show how mind isn't simply in the brain and the experience of dementia isn't simply the consequence of damage to that brain. Mind emerges from an interaction between the brain and the world around it. For persons living with dementia, this interaction is of great ethical importance. We the caregivers have at least some control over their world. Nancy's journey to find the “Crazy Doctor” (she's changed the description) leads her to the Lakeview Rest Home. Initial feelings of pleasure stirred by the sight of the structure's lattice fences soon transform into dread and fear. The silvery tiled floor looks slippery. The panes of the glass doors are wavy and distorted. The doors have knobs, but they don't open. This built environment is threatening. “There is nothing to do but get out of this place and go home,” she decides. But she cannot leave. We discover this has all been a dream. Nancy is a resident of Lakeview. We meet Sandy, an aide at Lakeview, helping Nancy get ready for bed. “What are we going to do with you,” Sandy says. “All we want is to get you into your nightie. And you go and carry on like a chicken that's scared of being et for dinner.” In the diction of long-term care, Nancy needs assistance with basic activities of daily living but she's resisting this assistance. She's agitated. The seemingly ordinary dialogue that follows is profoundly disturbing. Nancy says she was dreaming of a time when her husband was alive, and she was still driving a car. Sandy's reply is seemingly ordinary—“You have a nice car?”—but it is her choice of verb tense—“have” not “had”—and the topic of her question that are, together, extraordinarily absurd. Nancy was talking about her past (“When I was still driving a car”) and yet Sandy—and you can hear the weird, sing-song elder speak—asks about the car in the present tense, and her question neither substantively nor emotionally connects with what Nancy told her. Nancy was dreaming about two significant losses—a vehicle that gave her independence and her husband, but Sandy blandly replies with a question about whether the car was “nice,” whatever that means. But Nancy doesn't argue. Instead, she yet again acquiesces to absurdity. I write “yet again,” because Munro explains Nancy “knows that she has to behave differently, and more than that has to believe differently.” She feels the absurdity of how she is treated. Humans designed and named the frightening place called Lakeview Rest Home. Sandy chose her absurd words—“you have a nice car?”—that unmoored Nancy from time and denied her emotional experiences. She described Nancy not as a human in distress, but an agricultural animal off to the slaughter. Sandy extinguished a lucid moment and so an opportunity to connect with Nancy. The message is to us, the people who care for persons like Nancy. When we talk like Sandy and build structures like Lakeview, we're harming the person's conscious experiences. We are harming the patient's mind. We are contributing to dementia. Jason Karlawish drafted, revised and approves of the final manuscript. The author has nothing to report. The sponsor had no role in drafting, revising or approval of the final manuscript. In the last 12 months, Jason Karlawish was on the scientific advisory board of Linus Health and provided consultation to Biogen.