I’ve read a lot of stories where MC’s or MC’s families have diseases. I’ve been particularly impressed by Judi Piccolt’s “My Sister’s Keeper.” I have no problem with writers using that to create increased tension or to move the story forward.
However, there is one disease that I have a particular fondness for. I’ve known that I was going to be a geriatric nurse. In fact, that’s what I dressed up as on Halloween when I was 8 or 9. While I was in college, I worked over the summer at an assisted living for Alzheimer’s and Dementia. After only a few days, I learned to love my residents. They are the most loving and wonderful people I’ve ever met.
Once I got my nursing degree, I worked at a facility created solely to take care of Alzheimer’s and Dementia patients, and I loved every single day. On the days that I just couldn’t deal with my real life, I was so glad to escape into work with my residents. Even on their bad days, I loved my job. And in my free time, I would learn more about the disease to better understand my residents.
So for me, I really pay attention to how Alzheimer’s is portrayed in literature and media. And I’m come to this conclusion: Media is perpetuating a misconception of a very serious disease.
I know Alzheimer’s doesn’t seem like a common or serious disease to most people but let me put it this way.
What are the most common causes of death right now? (Other than old age, of course) According to the CDC, here’s the list.
1. Heart Disease
3. Respiratory Diseases
6. Alzheimer’s disease
Alzheimer’s is the leading cause of death, and guess what? There is no cure. We still don’t know what exactly causes it. For all of the rest, we’re making amazing strides in finding cures, preventing death. Sometime in the near future, the number of deaths due to the first 4 will decrease significantly. (We don’t really have a lot of control over number 5.)
With Alzheimer’s, we can only slow the process, but that doesn’t get the person with the disease back. Alzheimer’s is a disease caused by tangles in the brain. Certain parts of a person’s knowledge are lost. Usually, it’s the short term memories, though it manifests in a variety of ways. A person may forget how to walk, or how to eat. Their last memories, the ones that remain with them until the bitter end, are the ones that have a deeply rooted emotional involvement. I have patients who can barely talk, who’ve forgotten how and why to eat, who need help with almost every basic care of life, but they still recognize the sound of a son’s voice, their sister’s name or the face of their husband/wife. Those are the things that they cling onto until the very end.
So when I see movies or read books with Alzheimer’s disease, I cringe. I have yet to see it done in a way that doesn’t feel like a plot gimmick. Probably the most famous movie focused almost entirely on the disease is The Notebook. I’ve seen parts, the ones where the older couple is interacting, and while the older man is telling the story to the woman. Here’s my problem with it.
The woman is almost completely capable of everything. She’s able to play the piano, she’s able to eat without aid, and she can even listen to a story for an entire day without forgetting the story. However, she can’t remember who the man next to her is, and that’s almost exactly the opposite of the disease. This man is her husband, and they’d been married for decades. With Alzheimer’s, the farther the disease progresses, the shorter a person’s memory is. If she has the memory to listen to a story for an entire day, then she shouldn’t have any problem remembering her husband, or her family when they came to visit.
I’ve also read a book recently (very well written), but I was immediately turned off when the MC went to visit the aging father of a friend in a nursing home. Not only did he mistake her for his wife (with no indication of why), he also told her everything she needed to know, just to further the plot.
Have I been mistaken for a patient’s wife? Of course! But by that point, they weren’t able to create a complete thought. They couldn’t tell the difference between one person and another. They can’t continue a conversation for more than a few seconds.
Am I angry that they used Alzheimer’s in their stories? No, of course not. But I am disappointed that the disease was not properly researched. There are so many misconceptions about the disease, and the biggest one is that Alzheimer’s is just forgetfulness, it’s a part of old age. And a lot of people see it almost identical to amnesia. They don't realize that it's something that attacks the brain and that affects every part of living. Not just memory, but personality and function as well.
I know this is a long post, but it’s very important to me. Please do your research before using anything as a plot device. Whether it be a disease, a plot setting, etc, please make sure that you don’t create misconceptions.
Postnote: I wrote this several weeks ago, and scheduled it for today. I was unaware that this would be Alzheimer's awareness week, but I think it worked out perfectly. NBC is right now kicking off a campaign to not only increase awareness for this dreadful disease and they need our support. The campaign is called the Age of Alzheimer's. On twitter, it's #AgeofAlz. To read personal stories of those who've delt with this disease firsthand, go to http://www.nbcnews.com/health/topic/the-age-of-alzheimers. And for those who want to do something, there is a program called Us Against Alzheimer's.
Please take a stand. Yesterday, in a G+ discussion held by NBC, one of the speakers made a very good point. We need to be the voice of Alzheimer's because those with it have already lost theirs. It can be as easy as calling your State Representative and asking them to increase funding to find a cure.