"Before you can kill a demon, you have to be able to say its name."
These are the words of Terry Pratchett, internationally bestselling author, creator of one of the most extensive fantasy worlds in literary history, and recipient of a devilish diagnosis—early-onset Alzheimer's disease.
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As befits a true demon, an Alzheimer's diagnosis comes equipped with a built-in stigma that has the power to dehumanize even the most vivacious person. Research has shown that, when it comes to medical concerns, fear of Alzheimer's and other forms of dementia outstrips the fear of every other type of medical condition, save for cancer.
Alzheimer's is, undoubtedly, a fearsome beast. We have yet to invent a medical silver bullet that is capable of slaying it. Even attempts to impede its progress have little effect.
But, does it warrant such a potent stigma?
Today, the terms "Alzheimer's" and "dementia" are spoken quite often. News tickers are replete with headlines about ‘breakthrough' research, while characters on television shows and in movies increasingly encounter the disease as part of their fictional lives.
But, are we really naming the demon, or just the stereotype?
The Alzheimer's monster
For many older people, Alzheimer's is the adult equivalent of the monster in the closet—a vicious specter of a disease, come to steal your memories and independence in the middle of the night.
How did Alzheimer's acquire such a fearsome reputation? In a word: stereotypes.
Pamela Rutledege, a prominent media psychologist and director of the Media Psychology Research Center, describes stereotypes as useful mental tools that serve as "rules of thumb" for large amounts of information.
It would be easy to blame mass media for the stereotypical views of Alzheimer's.
Even in today's modern world, portrayals of the disease in books, movies, and on television are not always accurate and certainly not very uplifting. The image of an incoherent elderly person, lying prone on a hospital bed, staring up at the ceiling is all too easy to conjure up in part because it is so prevalent.
In an op-ed piece for the New York Times, Margaret Morganroth Gullette, author of the book, "Agewise: Fighting the New Ageism in America," discusses how society's increasing awareness of Alzheimer's has enhanced the stigma attached to it.
She says, "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."
But, Rutledge points out that the media shouldn't bear all of the blame. She maintains that the media is merely a reflection of the society in which we operate.
It's a classic, "Which came first?" dilemma that doesn't appear to have a truly concrete answer.
A sinister bedtime story
The media, in its many forms, is simply a vehicle for the ageless art of storytelling. When it comes to the Alzheimer's narrative, every television cameo by a dementia-stricken character, every news story about new methods of screening for the disease adds to the ongoing rhetoric.
And, like any classic bedtime story, this collection of fragmented, imprecise portrayals fuels our fear of the Alzheimer's fiend.
As human beings, we are primed to be influenced by a storyline, good or bad. Rutledge says that narratives help us connect with one another and make sense of our lives.
The indisputable power of stories means that, in order to edit out the stigma attached to Alzheimer's and dementia, we must change how we tell the story.
Wounding the beast
The fact is that media portrayals of Alzheimer's and other dementias have been gradually improving.
In 2006, the Alzheimer's Association awarded the television show, Grey's Anatomy, with the Abe Burrows Entertainment Award for their depiction of the relationship between fictional character, Meredith Grey and her mother with Alzheimer's. According to the Association's website, this award is "presented to an individual, television series, or movie that embodies the spirit of the event and has shown an extraordinary commitment to the mission of the Alzheimer's Association."
Just this summer, research pointing to an improvement in the quality of news reporting on dementia-related items was published in the Australasian Journal on Aging. The study found that news items about dementia improved in areas like, ‘sensationalism,' and ‘provision of information about health services.'
But, despite this progress, negative stereotypes continue to rear their ugly heads.
Last month, Pat Robertson, a well-known religious broadcaster, rationalized divorcing a person with Alzheimer's because the disease, saying that it "is a kind of death." His remarks reflect a common opinion—that a life with Alzheimer's or dementia is not really a life at all.
Rewriting the rhetoric
Perhaps Pratchett is correct; in order to destroy Alzheimer's we must first be able to say its name—not with a whisper, not with shame or embarrassment, but with firm resolve and realistic hope.
He is certainly taking the initiative to confront his monster. As the star of a BBC documentary, aptly named, "Terry Pratchett: Living with Alzheimer's," the author attempts to lift the veil of stigma-fueling mystery that shrouds the disease. Over the course of two hours, viewers hitch a ride with the famous author as he acknowledges and grapples with his fiendish diagnosis—continuing to write novels and make public appearances in spite of the disease.
Pratchett is just one of several public figures that, after coming out with their dementia diagnosis, are continuing to pursue their careers. In Knoxville, Tennessee, University of Tennessee women's basketball coach, Pat Summit, continues to guide her team in pursuit of another national championship. Somewhere in England, singer Glen Campbell is currently in the middle of his final concert tour.
As their stories are being broadcast over the mass media airwaves, the tales of everyday people with dementia are being told as well. In May of 2009, HBO aired a series of in-depth documentaries on people with Alzheimer's entitled, "The Alzheimer's Project." While some criticized the series as being a bit too optimistic when it comes to the search for a cure for Alzheimer's, it represented an important step in the right direction.
Rutledge says that, in terms of influencing public opinion and changing stigmas, allowing people to discuss their own experiences is the most potent form of storytelling. She points out that people's views about a topic are most likely to change if they are able to really connect with a story. "People telling their own stories will be 100 times more powerful than telling their stories for them."
According to her, if a narrative is self-relevant, it will seem more real and truthful.
As more and more people are diagnosed with Alzheimer's and other forms of dementia, the saga of the disease is constantly being added to. It is an ever-evolving epic without a fairytale ending in sight, but that doesn't mean that the protagonists are irrelevant.
On the contrary, experts like Rutledge say that people diagnosed with Alzheimer's or caring for people diagnosed with Alzheimer's need to be included in the story.
After all, it is their tale to tell.