Why does Hollywood sacrifice scientific accuracy for the sake of entertainment? Is it the product of poor research, no budget for scientific or medical consultants, or simply no desire to educate any of the general public on a disease that’s the 6th leading cause of death in the US (Heron, 2019)?  Still Alice, which focuses on Columbia professor Dr. Alice Howland’s diagnosis with early-onset Alzheimer’s disorder, paints a somewhat picture of Alice’s new life living with Alzheimer’s. It was released in 2014 by Killer Films under the direction of Richard Glatzer and Wash Westmoreland, and stars Julianne Moore as Dr. Alice Howland and Alec Baldwin as her husband, Dr. John Howland. The Diving Bell and the Butterfly is based on the true-life story of Jean-Dominique Bauby and his forever-altered reality after a suffering a stroke. The stroke leaves Bauby with locked-in syndrome, a complete paralysis of the body except for the eyes and eyelids which still allows the patient to blink and move their eyes.  The Diving Bell and the Butterfly was released in 2007 by Canal+ under the direction Julian Schnabel, and stars Mathieu Amalric as Jean-Dominique Bauby; Emmanuelle Seigner as Céline, Bauby’s ex-wife and mother to their three children; and Anne Consigny as Claude, who is the full-time translator for Bauby as he writes his memoir about living with locked-in syndrome. The two movies both get a lot right about the disorders, but either fall short on medical accuracy or focus too much on the disease itself.  Although Still Alice gave a realistic example of the symptoms of Alzheimer’s while falling short on accuracy, The Diving Bell and The Butterfly did a better overall job in teaching people about the neurology of locked-in syndrome.

Beyond showing correct symptoms of Alzheimer’s disease, Still Alice did not capture a very truthful picture of the common struggle with Alzheimer’s. Alice’s form of Alzheimer’s is in fact very rare (2014, 26:04), and it only accounts for 5% of all Alzheimer’s accounts (St George-Hyslop, 2000). However, the writers did not get much past that correct about Alice’s form of Alzheimer’s. Still Alice shows Alice deteriorating to the point where she cannot speak about a year after her diagnosis. According to the Alzheimer’s Association, most Alzheimer’s patients live four to eight years past their diagnosis, and some are even able to live 20 years past. Alice’s neurologist does note that it’s normal for familial Alzheimer’s patients to deteriorate fast (2014, 1:02:20), but Alice’s rate of deterioration is much faster than what is normal. There is, however, a subtype of Alzheimer’s that has a rapid progression at with about the same duration as Alice’s form, but this subtype typically appears like Creutzfeldt-Jakob Disease with the most common symptoms being myoclonus (muscle spasms), disturbed gait, and body rigidity (Schmidt et al., 2010). Those with this rapid progressing subtype also are diagnosed around age 65, 15 years older than Alice when she is diagnosed. My second problem is that on the day of Lydia’s play, Alice seems to be able to recognize Lydia in the morning, but then unable to recognize her later in the day. It is common for Alzheimer’s patients in the moderate stage of the disorder to be unable to put names to certain faces, but they are still able to recognize someone as familiar or not. Alice, later in the day, does not seem to recognize Lydia at all, especially when Alice asks her if she’ll be at the theater all season. When Alice’s daughter, Anna, points out that Lydia is also her daughter, Alice seems to recognize Anna as her daughter (2014, 1:01:00). And as for the movie as a whole, the soundtrack did not enhance the storytelling, and almost took away from it; it made the film seem bare and even took away from critical points in the film. Although the film was moving in how the viewer could see how her disease affected her relationships as she deteriorated, overall the movie was flawed and my interest in it waned as I noticed more and more inaccuracies within the movie.

The Diving Bell and the Butterfly told a scientifically accurate and emotionally moving story. It was wonderfully told from the point-of-view of Jean-Dominique Bauby’s left eye, and the way it was narrated really articulated how the disease affected Bauby’s body but not his mind. Although Bauby was completely paralyzed besides his eyes and eyelids, the mind of someone with locked-in syndrome is still fully functional and just as intelligent and expressive than before whatever injury left them with locked-in syndrome. Because locked-in syndrome is a rare disease, there are not many methods available today with little variation from 1995, when Jean-Dominique suffered his stroke. Even today, according to the National Organization for Rare Disorders, the therapies are the same as those seen in the movie: partner-assisted scanning, a technique that enables those with severe speech impairments to communicate relatively normally, and the rehabilitation of small voluntary movements, typically swallowing and sound production. Bauby’s death from pneumonia was also very accurate. Doctors at the National Rehabilitation Hospital in County Dublin, Ireland stated in 2005 that pulmonary complications are the main cause of death in those with locked-in syndrome, since they have no cough reflex and no ability to control swallowing (Smith & Delargy, 2005). I also enjoyed how the point-of-view changed as Bauby realized his situation did not hinder him to write an entire book, from only being shown from Bauby’s left eye (the right was sewn shut to prevent it from becoming septic), to external shots of Bauby’s face and body, to complete third person of Bauby with others. The music also enhanced the emotions of the film without being too overwhelming during times of high emotion. Something that would have been nice to see in The Diving Bell and the Butterfly, however, is the relationships of others around him. It’s difficult to see how those close to him were handling Bauby’s new reality, with only a few shots where you can see emotion from people Bauby knows, one of which being his son who was with Bauby when he had his stroke (2007, 59:01).

The Diving Bell and the Butterfly accurately showed locked-in syndrome through the narration and cinematography to demonstrate the paralysis Bauby was physically in. While Still Alice showed accurate therapies of Alzheimer’s, the speed of her deterioration didn’t reflect a true early-onset Alzheimer’s case, making it less informative to the general public. Stories about real diseases, like the two mentioned above, should not have to be warped for entertainment. The industry should pay more attention to true representations of such diseases. With false representations, the movie can be offensive to those who have the disease or have a close connection to the disease. Additionally, they also risk falsely informing the audience about the disease. Directors, producers, and writers in the industry should meet with those who have the disorder in question or should consult with doctors who treat that given disorder. Spending time to bring real evidence into the stories can still be just as entertaining while still respecting the patients and their experiences.

Word count – 1,182

Bibliography

Glatzer, R., & Westmoreland, W. (Directors and writers). (2014). Still Alice [DVD]. Culver City, CA: Sony Pictures Home Entertainment.

Heron, M. (2019). Deaths: Leading Causes in 2017.  National Center for Health Statistics. Retrieved from https://www.cdc.gov/nchs/data/nvsr/nvsr68/nvsr68_06-508.pdf

Schmidt C., Redyk K., Meissner B., Krack L., von Ahsen N., Roeber S., Kretzschmar H., Zerr I. (2010). Clinical Features of Rapidly Progressive Alzheimer’s Disease. Dement Geriatr Cogn Disord; 29:371-378. Retreived from: https://epub.ub.uni-muenchen.de/16912/1/10_1159_000278692.pdf

Schnabel, J. (Director). (2007). The diving bell and the butterfly [DVD]. Burbank, CA: Touchstone Home Entertainment.

Smith, E., & Delargy, M. (2005). Locked-in syndrome. BMJ, 330(406). doi: 10.1136/bmj.330.7488.406

St, G.-H. P., & Scientific American, inc. (2000). Alzheimer’s piecing together. New York: Scientific American, Inc.

Stages of Alzheimer’s. (n.d.). Retrieved from https://www.alz.org/alzheimers-dementia/stages

Stages of Alzheimer’s Disease. (n.d.). Retrieved from https://www.hopkinsmedicine.org/health/conditions-and-diseases/alzheimers-disease/stages-of-alzheimer-disease