Alzheimer's Patients Are Not Zombies

I saw a woman lose her mind, right in front of me, and then get it back, right in front of me.

Just like that.

We were talking about her life, hertypical day, when I asked her about Doug. "Who’s Doug?" she replied. I didn’t answer but, like one of my patients, I repeated myself: "How's Doug?" Again she replied, “Doug?”

This time, I answered, “Doug, your husband.”

Open-mouthed, she was surprised, even scared, like she’d seen a ghost. “I have a husband?” He came back to her like an old friend. “Of course, Doug, my husband. Oh, my…” She’d forgotten him, right in front of me. She begged me not to tell him she had forgotten him.

I’ve been wondering if I should have pushed her. Or maybe I should have dropped my line of questioning. I could have gotten away with that. White-coated and armed with my clipboard in my exam room, I wield authority. I could’ve simply moved on to another topic and she’d have gone along to get along. I could have lied or created some kind of imaginary “Doug.”

There comes a stage of Alzheimer's disease when people no longer recognize the ones they love: their spouses, friends and children. They may ask for long-dead relatives. They may ask to go home, when in fact they are home. The crushing fear of this produces a dangerous metaphor for the disease: patients become a kind of living dead or, in a word, zombies.

This troublesome metaphor often has innocent origins, as researcher Susan Behuniak explains in her essay, “The living dead? The construction of people with Alzheimer’s disease as zombies.” It pervades the ways we think about Alzheimer’s; see, for example, this blog or the TV preacher Pat Robertson's argument that divorce from an Alzheimer's patient is acceptable because the patient is a living death. Well-meaning caregiving guidebooks use it. Professional journals have articles such as “Hospice care for the living dead.”

The problem with the zombie metaphor, with thinking about the patient as a living dead, is that it limits our repertoire of emotions. We feel fear and disgust, emotions that in turn cause stigma, which describes a deliberate distancing and dehumanizing of a person.

Jews in Germany, homosexuals everywhere and, more recently, undocumented residents in the U.S.—when we stigmatize a group of people, we cease to care. The stigmatized become a threat, a burden. They’re put in ghettos, deported, even eliminated.

Persons with Alzheimer’s disease are called a “silver tsunami” that will bankrupt America. They feel a distancing from others. The public’s negative emotions are driven by the decline expected with Alzheimer’s disease. We hope for a cure, but hope is not a plan, and horror stories are for teenagers. We—autonomous grown-ups—need other ways of thinking about the disease.

This other way isn’t some fairy tale of unicorns and rainbows. Alzheimer’s, like other diseases that progressively destroy our brains, disrupts our ways of being, because its earliest symptoms are a loss in our capacity to exercise a cherished ethic: autonomy. We need to grow up, and think I’ve found a way we can do this in the stories of Alice Munro.

In her “In Sight of the Lake,” we meet Nancy. She’s bothered by memory problems. After a visit to her doctor (she came on the wrong date), she’s referred to a memory specialist in a neighboring town. To prepare for the visit, to avoid arriving flustered and late, she decides to drive to the town the evening before the visit, locate the office and so return the next day at ease over where she needs to travel.

She reaches the town, but she cannot find the doctor’s office. In her wanderings, she’s self-conscious of the troubles she’s having. She feels her world is coming apart. A child rides backwards on a bicycle, clocks are broken, a jewelry store sells junk. She resists asking for help, fearful that, once she’s out of earshot, people will “speculate” about her.

At story’s end, Nancy is in another place, in a bed in a nursing home. Sandy, one of the aides, is struggling to get her dressed in her nightclothes (Sandy calls it a “nightie”). Nancy is agitated. It has all been a dream.

Sandy says she’s acting like a chicken afraid it’s going to be “’et for dinner,” a politer way of saying Nancy’s acting not like a person who’s had a bad dream, but like a mindless bird, a chicken with its head cut off.

Reprinted- Forbes - Jason Karlawish is a Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania.