Our Irrational Fear
The New York Times
May 22, 2011
hypercognitive society, fear of forgetfulness has made deep inroads
into the psyche. Misplacing car keys, once considered mere
absent-mindedness, is now a clinical symptom. Technological ineptitude
in the prime of adulthood is ascribed to memory failure.
The mere whiff of perceived memory loss can have terrible consequences
in an insecure economy in which midlife workers are regularly (and
illegally) laid off on account of their age. This epidemic of anxiety
around memory loss is so strong that many older adults seek help for
the kind of day-to-day forgetfulness that once was considered normal.
Greater public awareness of Alzheimer’s, far from reducing the
ignorance and stigma around the disease, has increased it. People over
55 dread getting Alzheimer’s more than any other disease, according to
a 2010 survey by the MetLife Foundation. The fact that only 1 in 8
Americans older than 65 has Alzheimer’s fails to register.
Is the prospect of the disease so horrifying that it should prompt
someone to consider suicide? A writer I know whose mother had
Alzheimer’s told me she is stockpiling pills. An academic told me he
has found someone who will help him die “before I lose my mind.”
Advocacy groups, manufacturers of so-called anti-aging products and the
news media have, for varying reasons, tended to inflate the number of
sufferers and the horrors of the condition. Doctors, too, have been
complicit: some use “cognitive impairment” as an argument for ending
dialysis or other life-sustaining treatments.
And some voices in our culture amplify these alarming sentiments. Tony
Kushner links Alzheimer’s to suicide in his new Off Broadway play, “The
Intelligent Homosexual’s Guide to Capitalism and Socialism With a Key
to the Scriptures.”
His 72-year-old hero, Gus Marcantonio, a retired union organizer, tells
his assembled family that he has guessed he has Alzheimer’s, and wants
to sell the family house and kill himself over the weekend. Gus has no
symptoms that the audience can see except once losing his place in a
voluble, earnest and moving speech.
In the Korean director Lee Chang-dong’s film “Poetry,” which won the
award for best screenplay at Cannes last year, the graceful and
empathetic heroine, who is 66, is given a diagnosis of Alzheimer’s. She
too has no symptoms other than once forgetting the word for “bus
station.” Yet in the film she jumps off a bridge.
The characters have other motives besides fear to end their lives —
guilt, mainly. So why is Alzheimer’s brought into these plots so
conspicuously? Perhaps because no other motivation seems as plausible
to an audience as a reason to kill oneself.
Despite the prevalence of Alzheimer’s in our national conversation,
diagnosing the disease is actually difficult. There is no test that can
predict whether forgetting names or words like “bus station” is an
indicator of the onset of a degenerative disease. Many older people
lose the ability to remember proper nouns but then never progress to
losing any other part of speech.
Most forgetfulness is not Alzheimer’s, or dementia, or even necessarily
a sign of cognitive impairment. And yet any prophecy about impaired
cognition — whether it is fulfilled or not — harms people’s sense of
self. They begin to be treated like children, patronized with baby talk
or avoided. At the assisted living facility where my mother lived until
she died last year at age 96, the nursing director told me that some
people think Alzheimer’s is contagious. Victims of misdiagnosis — or,
just as devastating, self-diagnosis — dread being shunned, rejected by
their offspring, going into debt, becoming a “burden,” losing selfhood.
It needn’t be this way. People with cognitive impairments can live
happily with their families for a long time. My mother was troubled by
her loss of memories, but she discovered an upside to forgetting. She
had forgotten old rancors as well as President George W. Bush’s name.
We sang together. She recited her favorite poems and surprised me with
new material. We had rich and loving times. Suicide didn’t cross her
The mind is capacious. Much mental and emotional ability can survive
mere memory loss, as do other qualities that make us human.
In fact, a revolution in care-giving might be slowly taking root, at
least among those aware of alternative narratives of memory loss.
Thomas Kitwood, a British psychologist who was a pioneer in the field
of dementia care, died in 1998, but his books, which emphasize
personhood instead of debilitation, remain influential. “Making an
Exit,” a memoir by Elinor Fuchs, a drama professor at Yale, explored
the conversational patterns of her mother when she was in an advanced
stage of Alzheimer’s. Anne Basting, director of the Center on Age and
Community at the University of Wisconsin, Milwaukee, who wrote a play
from poems created by people with Alzheimer’s, has a slogan: “Forget
Memory. Try Imagination.”
What a difference it would make if everyone began to share these
attitudes. We could make cognition-related fear-mongering shameful and
rare, make debates about end-of-life care less searing, improve
treatment protocols, reaffirm our collective compact with older people,
ease our relationships with people of any age who are cognitively
impaired, and enable adults to look forward to getting older with hope
instead of despair.
Margaret Morganroth Gullette, a scholar at the Women’s Studies Research
Center at Brandeis University, is the author of “Agewise: Fighting the
New Ageism in America.”
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