Do you remember?
Dementia, memory loss, and cognitive accessibility in cinema, media, and real life
The word “dementia” is uttered frequently today with regards to one man whose immense and unbalanced power is wreaking havoc in the world. Frank George, an American psychologist and neuroscientist, was recently quoted suggesting that the president is displaying “increasingly worrying symptoms of frontotemporal dementia (FTD).”
Whether George’s commentary violates the “Goldwater Rule” of the American Psychiatric Association, which explicitly states that professional opinion on the public figure’s mental state should not be shared without a proper examination and the patient’s explicit consent, is beside the point.
On occasion psychiatrists are asked for an opinion about an individual who is in the light of public attention or who has disclosed information about himself/herself through public media. In such circumstances, a psychiatrist may share with the public his or her expertise about psychiatric issues in general. However, it is unethical for a psychiatrist to offer a professional opinion unless he or she has conducted an examination and has been granted proper authorization for such a statement.
The discourse of Trump’s mental state highlights the myths and biases around dementia. The public is quick to blame his recklessness, irritability, and lack of empathy on some neurological condition, not only reducing the president’s personal responsibility for his words and actions but stigmatising those who actually live and struggle with dementia, perpetuating dangerous misconceptions about cognitive impairments that stem from centuries of ostracism and exclusion. It certainly doesn’t help that popular entertainment forms, such as cinema, contribute to reinforcing these beliefs.
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Memory loss as a storytelling device.
Memory loss is a fascinating literary tool.
In cinema, memory loss is primarily used in two ways: as a vehicle for the plot or an element of the story. The former is rather straightforward: it often forces the character to chase after their lost memories, like Ben Affleck in the hilariously bad “Paycheck”, a literal reverse engineer who slowly uncovers the truth. The latter is more curious about the relationships between memory and personality and the role of memories in learning and sense-making. “Eternal Sunshine of the Spotless Mind” cleverly uses artificially induced memory loss as a plot device to explore the themes of love, longing, and heartbreak through its lens. Films that feature memory loss and examine it as a subject are truly abundant, but only a small number of them bother to craft an accurate representation of how it works in real life.
Christopher Nolan’s “Memento” was praised by the scientific community for its accurate depiction of anterograde amnesia—the inability to form new memories after a certain event. The main character is hunting down his wife’s killer and has to rely on notes, photographs, and tattoos to dig up the truth, and Nolan’s use of non-linear narrative and colour scheme make his perpetually confused and agitated state almost palpable. “Memento” refuses to romanticise or underplay the severity of the character’s condition, painting a terrifying and realistic picture of life with anterograde amnesia and suggesting an action-rich plot to explore it through.
In “Still Alice”, the titular character’s Alzheimer’s disease slowly takes away everything that defines her: a distinguished linguistics professor and a happily married mother of three, she loses her job, her family, and soon, the ability to live independently. “Still Alice” is not so much a story of battling an illness as it is a story of preparing for the imminent decline, finding comfort, and making accommodations. It is a story of acceptance that challenges its protagonist to retain a tiny piece of herself, a shred of dignity, a dash of agency as her memories fade, and she fades with them.
The Father, a 2020 directorial debut of Florian Zeller that won him an Oscar, examines memory loss from a different angle. At first, its main character is introduced as a charming elderly man who refuses to accept help as his health deteriorates, but deeply cares about his daughter. As the film goes on, we get to see his other side, too: he speaks of his daughter in third person with her in the room, calls her “not too bright”, laughs at her sobriety, and compares her to his “favourite” other child. His attachment to his flat turns out to be more than a manifestation of his unwillingness to accept change: he promises his daughter that he will make a point out of outliving her. He turns up his charm and boasts to his new, young caretaker that he was a tap dancer, only to lash out at her once she lowers her guard. The world itself begins to warp around him: time jumps sideways, characters change their appearance, placing the viewer inside the protagonist’s confused head, and dreams and delusions blend and intertwine. What decade is it? Whose flat is it? Why does no one look like themselves? The viewer gets to experience the dread of distrusting their eyes and their memories together with the main character:
First-time director Florian Zeller who also co-wrote the screenplay, drawing from his own experiences of his grandmother’s illness, paints a brutally alive and utterly chaotic picture of what it means to suffer from dementia, a disease of memory, thoughts, and other higher-order brain functions
Most portrayals of memory loss in cinema, however, have little to do with how it works in reality—the condition is often fictionalised for the plot, simplified for the viewer, or altogether made up:
Jason Bourne struggles with amnesia, which, according to Hollywood, is something of an occupational hazard for professional assassins
There is a good case to be made in defence of films such as “Dark City” and the aforementioned “Eternal Sunshine of the Spotless Mind” which use fictional memory erasing tools to explore other themes. The same cannot be said about movies like “50 First Dates” which invents a neurological condition for the plot or a 1956 film “Singing in the Dark” which features a Holocaust survivor with total amnesia whose recovery begins with a blow to the head. By grounding their stories in reality, referencing real events, and occurring in the present time, these films inadvertently perpetuate myths and misconceptions about an already seriously misunderstood medical conditions, reinforcing the viewer’s belief in the healing properties of severe head traumas and romantic gestures.
D is for degeneration
In 2021, Mike Burns, co-founder of the EDM duo “Interstate” and a former music supervisor at Lionsgate, directed two movies—“Out of Death” and “Wrong Place”—both starring the action icon Bruce Willis. Willis’s career had been going downhill for quite some time by then: he would appear in several direct-to-video movies each year, barely had any lines, and the audience had learnt to associate his name with low quality production, poor writing, and underwhelming performance.
Nonetheless, Burns was excited to feature Willis in his directorial debut—which is why he was so surprised when the actor’s team approached him with a rather unusual request. The team asked to reduce Willis’s role, cut his dialogue as much as possible, and shoot all of his scenes in one day. More than that, the star looked confused on set, couldn’t remember his lines, and even had issues holding a gun. Says Burns,
After the first day of working with Bruce, I could see it first-hand, and I realized that there was a bigger issue at stake here. After we finished, I said: ‘I’m done. I’m not going to do any other Bruce Willis movies.’
The explanation for Willis’s unusual behaviour came in shortly, when in 2022, his family announced that he would retire from acting due to health issues. In 2023, he was diagnosed with frontotemporal dementia—an umbrella term for a type of dementia, common symptoms of which include changes in behaviour, apathy, loss of speech and memory.
Bruce Willis’s diagnosis brought the media’s and the public’s attention to the diagnosis of frontotemporal degeneration (FTD), raising awareness of the condition but often widely misrepresenting it. Unlike some mainstream sources that didn’t even bother to explain what FTD was, The New York Times published an article describing its variants in details:
There are two main variants of FTD: primary progressive aphasia, which hampers a patient’s ability to communicate, and behavioral variant frontotemporal dementia, which manifests as personality and behavioral changes.
The Washington Post went even further by including a breakdown of the symptoms of progressive aphasia (PPA):
There are two major subtypes of aphasia—the agrammatic type or the semantic type—that are caused by FTD […] The agrammatic type is more of a problem with producing grammatically constructed sentences, syntax, whereas the semantic type is really the meanings of words […] The agrammatic type tends to be due to the tau problem in the brain, which affects the frontal lobe, mostly. Whereas the semantic type tends to be due to the TDP-43 type, which tends to affect the temporal lobe of the brain.
The statement published by Willis’s family suggested that the actor was indeed suffering from PPA, aphasia being the first major symptom of FTD:
Since we announced Bruce’s diagnosis of aphasia in spring 2022, Bruce’s condition has progressed and we now have a more specific diagnosis: frontotemporal dementia (known as FTD).
Many news outlets, however, including CBS, Entertainment Tonight, and Variety, presented their own interpretation of the statement and reported that Bruce Willis’s condition had progressed into frontotemporal dementia. The implied connection here is as misleading as it is factually incorrect: aphasia is a manifestation of FTD, not a stepping stone towards it, and Willis’s condition has not progressed into FTD—it has progressed, full stop.
Liberal use of dementia as an umbrella term for a variety of conditions has over the years stripped it of complexity and nuance, severely distorting the public perception of the disease. In 2008, a paper was published that called to eliminate dementia as a diagnostic term:
The word dementia has become a convenient tool by which many physicians describe a broad group of symptoms common to many brain disorders. Unfortunately, the clinical diagnosis often carries with it unintended cruel connotations in the lay language and a concomitant destructive potential.
The need for a new, more accurate and inclusive term, inspired the “Association for Frontotemporal Dementia” to change its name in 2011 to the “Association for Frontotemporal Degeneration”. In the announcement, the organisation explained that ‘degeneration’
emphasizes some of the critical characteristics of FTD—the gradual and progressive nature of the degeneration in brain cells, as well as variable degrees of the degeneration in cognitive, behavior, language, and motor functioning.
It is hard to judge whether the public’s perception of dementia has changed in recent years, although the portrayal of brain conditions in media has certainly become more nuanced. We have surely come a long way from slapping the same label onto every cognitive impairment to appreciating the subtle differences between rare neurological conditions, although much still remains to be done.
The digital world is a terrifying realm of disorder and distraction, where the user’s attention is often won with invasive persistence and constant pressure, and people with cognitive disabilities, such as impaired short-term memory, are highly likely to find themselves lost and confused amidst all the chaos. To avoid overwhelming the users, cognitive accessibility objectives suggest a set of simple checks and principles for easy navigation, task completion, and error avoidance.
One cognitive accessibility objective in particular states that users should not rely on memory to complete tasks:
On average people can remember 7 letters or items at the same time. A person with an impaired working memory may be able to remember one to four pieces of information at the same time (depending on the extent of the impairment). If they need to remember other tasks, such as track what they have done, they are likely to make mistakes.
It is not hard to see how this principle applies to able-bodied users as well as people with disabilities: explicit instructions, clearly labelled interactions, and simple layouts help avoid confusion, prevent errors, and retain visitors. In the world where every second of attention, every keystroke, and every eye movement are heavily monetised, meeting the cognitive accessibility objectives is just good business.
Too bad we struggle to remember it.