Movies that help us understand the worlds of dementia and Alzheimer’s

How Movies like ‘The Father’ Helped Me Understand My Mother’s Alzheimer’s

After avoiding dementia dramas, a writer finds new perspectives in a spate of films exploring the disease in unconventional ways.

Anthony Hopkins as Anthony in ‘The Father,’ a drama that uses mystery to help audiences identify with a man suffering from dementia. SONY PICTURES CLASSICSSHARE

By John JurgensenFeb. 24, 2021 4:05 pm ET

My mother was the reason I initially resisted “The Father.” The new film stars Anthony Hopkins as a man struggling against the effects of dementia. That synopsis was enough to trip my avoidance instinct, despite the time that has passed since my mom’s death, on Feb. 18, 2017, at age 76 from Alzheimer’s disease.

I had learned all I wanted to know about dementia from her. Over seven years, I saw it change Joan Jurgensen from the captain of my family to a castaway adrift in time and place, who fussed over invisible children at her feet, grieved anew each time she learned that her parents died decades ago, and sang church hymns even after she struggled to form linear sentences.

But lately I’ve been re-examining that chapter, drawn in by the work of filmmakers using cinematic techniques—manipulations of time, perspective, setting and genre—to explore the interior worlds of dementia. With more and more people living with Alzheimer’s, the most common form of dementia (now nearly 6 million Americans, plus their caregivers) these movies show how reckonings with the disease in art are evolving.

Joan Jurgensen, center, with her husband Craig and three children from left: Heather, John and Susan, in 2012, two years after the onset of her symptoms of Alzheimer’s disease.PHOTO: JOHN JURGENSEN

Last year’s “Relic,” from writer-director Natalie Erika James, is a horror movie set in a house mirroring the space inside its owner’s deteriorating mind. In “Elizabeth Is Missing,” a recent PBS movie starring Glenda Jackson, 84 years old, a woman’s memory loss is a plot device and a metaphor in her search for a vanished friend. In the format-bending documentary “Dick Johnson Is Dead,” filmmaker Kirsten Johnson grapples with the impending loss of her father by casting him in faux movie scenes, complete with stunt doubles and elaborate sets.

“The Father” uses subtle tricks to make the main character’s mounting disorientation feel firsthand for the audience. For me, the effect wasn’t just a reminder of my experience of Alzheimer’s, it was a surprising glimpse into my mother’s.

The movie, to be released Feb. 26 and nominated for four Golden Globes, features Mr. Hopkins as the 80-year-old title character, also named Anthony. It is largely set in a London flat where he interacts with his daughter, played by Olivia Colman. As we navigate with Anthony around rooms with multiple doors and a connecting corridor, the place starts to feel like a labyrinth. Furniture, wall colorings and other décor switch between scenes, though we don’t always notice the changes. With Anthony, we encounter new characters who behave as if they should be familiar. Such vexing details (Anthony’s missing watch, his absent second daughter) make the story play like a mystery. But not all the clues add up.

As director Florian Zeller told me, “The moment comes when you cannot understand everything, and you have to let it go, as the main character does. Then you can understand the story on an emotional level.”

‘The Father’ director Florian Zeller on set with Anthony Hopkins.PHOTO: SONY PICTURES CLASSICS

I asked Mr. Hopkins how he inhabited a character with an unreliable mind. He said his own memory is strong. At 83, he paints, memorizes poetry, practices Brahms and Rachmaninoff on the piano and, at the time we spoke, was reading “Bleak House.” The actor said he followed the map laid out in the screenplay for “The Father” (adapted by Christopher Hampton and Mr. Zeller from the director’s play of the same name). On set, however, seemingly mundane things turned into important access points. 

In one scene, his character struggles to put on a sweater. It’s a fleeting moment, yet it triggered a crash of emotion within Mr. Hopkins. As he fumbled inside the garment, the actor felt “the terror of the losing, the anchors going.”

“That’s what really crucified me,” he said. “Just putting on the sweater.”

After my mother was diagnosed, people trying to gauge how bad things were almost always asked the same thing: “Does she still know who you are?” That question only hints at the myriad things someone experiences as her neural pathways turn into dead ends. My mom’s problems began with spatial perception. She got lost on a walk in the neighborhood that had been home for 40 years. Later, her other senses became part of the maze. She’d wince at utterly familiar noises, or fix her gaze on something no one else in the room could see.

What was it? It’s impossible to know because the isolation of Alzheimer’s is mutual: As it gets harder for them to communicate with us, it gets harder for us to comprehend their perspective inside a mind untethering from memory, language and more. Filmmakers who have observed this firsthand say their medium is uniquely suited to bridging that divide.

“For me it’s so connected to this decades-long experience I have of being a cameraperson, because the camera is always allowing me to look deep into people’s eyes and wonder what’s going on in there,” said Ms. Johnson, whose mother, Katie Jo, died of Alzheimer’s at age 78. That was a decade before her father, Dick, a psychiatrist, began showing signs of dementia.

“Dick Johnson Is Dead,” now on Netflix, is one of 15 films on the Oscars shortlist for best documentary feature. In the film Ms. Johnson made her process as transparent as her motives. “It’s an experiment,” she told me. “How can we keep my father alive forever? How can we keep the dementia from pulling him apart?”

On one level, the movie chronicles the phases of her chipper, inquisitive father’s decline: losing access to his car, moving from his Seattle home into Ms. Johnson’s one-bedroom New York apartment. At the same time, his daughter delves through the symbolism of it all, with his gung-ho participation, in Hollywood-style tableaus. They include loopy scenes showing Dick (now 88 and living in a dementia-care facility) in a blissful afterlife.

Other scenarios are more grim. One began with an actual night of trick-or-treating for Dick and his grandkids, captured on camera by his daughter. When he got weary, she stationed him at a friend’s house, where he later woke up frightened in an empty, unfamiliar apartment.

Filmmaker Kirsten Johnson, above with her father Dick, orchestrated Hollywood-style movie scenes with him in the documentary ‘Dick Johnson Is Dead.’PHOTO: NETFLIX

Ms. Johnson also recreated that experience from her dad’s point of view in the film. We see a movie set representing a haunted version of that strange apartment, where Dick wanders in his Halloween costume, encountering locked doors.

As she shot and edited the movie, Ms. Johnson found parallels to her dad’s experience with dementia. “I was trying to assemble all of these fragments that are out of time and space, trying to add up to something that has meaning.”

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