"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 (EOAD).
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As befits a true demon, this 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 AD and other forms of dementia outstrips the fear of every other type of medical condition, save for cancer.
It 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.
Are we actually giving this demon a name, or just providing a stereotype?
The Alzheimer's Monster
For many older people, AD is the adult equivalent of the monster in the closet, a vicious specter of a disease, that has come to steal your memories and independence in the middle of the night.
How did it acquire such a fearsome reputation? Stereotypes are to blame.
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 AD.
Even in today's modern world, portrayals of the disease in books and 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 and 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 AD 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 also points out that the media should not 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, chicken and egg 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 AD narrative, every television cameo by a dementia-stricken character and every news story about new methods of screening for the disease adds to the ongoing rhetoric.
In addition, like any classic bedtime story, this collection of fragmented, imprecise portrayals fuels our fear.
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 AD and dementia, we must change how we tell the story.
Wounding the Beast
The fact is that media portrayals of dementia 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 AD. 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 Ageing. The study found that news items about dementia improved in areas like, sensationalism, and provision of information about health services.
However, despite this progress, negative stereotypes continue to rear their ugly heads.
Some time ago, Pat Robertson, a well-known religious broadcaster, rationalized divorcing a person with AD because the disease "is a kind of death." His remarks reflect a common opinion that a life with dementia is not really a life at all.
Rewriting the Rhetoric
Perhaps Pratchett is correct; in order to destroy AD we must first be able to say its name, but not with a whisper, shame or embarrassment. Instead, we must say it 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 that shrouds the disease and fuels its stigma. Over the course of two hours, viewers hitch a ride with the famous author as he acknowledges and grapples with his diagnosis and continues to write novels and make public appearances.
Pratchett is just one of several public figures that, after going public with their dementia diagnosis, are continuing to pursue their careers. In Knoxville, Tennessee, University of Tennessee women's basketball coach, Pat Summit, continued to guide her team in pursuit of another national championship for as long as she was able. Glen Campbell continued to perform for a year after he shared his diagnosis in 2011.
As their stories are being broadcast over the 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 AD 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, 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, 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 with AD and those who are caring for them need to be included in the story.
After all, it is their tale to tell.