Editor’s Note: Dementia and cinema are no strangers. But with cases predicted to soar, the subject is coming into greater focus. Meet the filmmakers whose bold and creative visions are transforming our understanding of the condition.

CNN  — 

“Who wants to watch a film about dementia?” Kirsten Johnson gets your reluctance; the writer, director and cameraperson has been there herself. “I remember someone tried to show me a dementia video when my mom first got it and I was like, ‘f–k you.’”

Whether you’ve had contact with dementia or not, watching a film about it is a confronting experience. Shunning these stories is an act of self-protection, she argues.

Johnson’s mother Catherine developed Alzheimer’s, the most common form of dementia. Before she died in 2007, Johnson recorded her mother with the condition, and used footage in her 2016 documentary “Cameraperson.” Then her father Dick began to develop symptoms. They knew they wanted to work together on a film about it, but exactly what that film would look like was unclear.

“I knew the version of grappling with all this that was only about grief. Only about crying. Only about loss. I knew I didn’t have the capacity to do it that way again – it was going to kill me,” Johnson says. “I needed cinema to help me … because I knew I was going to live through this.”

Johnson’s words will chime with viewers, many of whom have seen variations of this “version” on screen: The anguished husband or wife watching a spouse decline (“The Notebook,” “Away From Her,” “Amour”) or the distress of a brilliant mind cut off at the knees (“Still Alice,” “Iris,” “The Iron Lady”). They’re nearly always dramas, while critical praise is often framed around performance, and a film’s ability to depict dementia and its fallout with accuracy. That’s not to dismiss such movies – some of them are excellent – but you’d be hard-pressed to call their storytelling innovative.

Dick Johnson and daughter Kirsten on a Halloween-inspired set in "Dick Johnson is Dead."

In 2020, however, things changed. Not only was there an influx of films about dementia, the approach taken by some has been nothing short of radical. Authenticity, once a badge of honor, has been rejected by certain filmmakers, who have found other paths to articulate dementia’s abstract qualities.

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These stories have brought new life to the subject on screen. And frankly, like Johnson, we need cinema’s help. According to the World Health Organization, global cases of dementia – defined as a group of symptoms caused by diseases affecting the brain – are projected to triple to 152 million by 2050. If it hasn’t touched your life already, it likely will. Finding ways to expand our understanding and process the emotional toll of dementia is only becoming more necessary with each passing day.

“If we’re going to see difficult things together, we have to prepare each other for it,” says Johnson.

“Cinema and dementia … they are mirrors of each other”

Johnson settled on comedy for her film, “Dick Johnson is Dead.” “It’s sacrilegious to laugh at death and to laugh at dementia,” she says. “It felt like an act of defiance.”

The film weaves elements of fiction into documentary as father and daughter set out to “kill” him in a series of violent stunts. And though Dick gets resurrected each time, they also imagine the consequences of his death. He gatecrashes his own funeral and parties in the afterlife, this retired psychiatrist proving the natural showman. These scenes sit among candid footage of Dick at the doctor, relinquishing his car, packing up the family home, but never losing his chipper sense of humor. It’s wry and gentle, joyful and grief-stricken, and packed with love.

A stunt in "Dick Johnson is Dead," and Kirsten Johnson directing her father.

Dementia, Johnson contends, is inherently cinematic and “incredibly creative.” She talks about it altering her mother’s perception of shadows, turning them into holes in the ground, and her father believing her apartment was an airplane cabin.

“What’s so exciting about cinema in relation to dementia (is) they are mirrors of each other,” Johnson says.

“Cinema is a series of fragments of images and sounds and music, put together in an order that allows us to experience emotions,” she says, adding that cinema functions in a similar way to human consciousness. “(It) takes in all this perceptual information and orders it and makes some sense of it. It’s also predicated on what matters to us, or what we believe to be true.”

Aligning a film’s lens with the person with dementia and showing their truth, rather than viewing it from the outside as symptoms to be mined for dramatic effect – this feels like a departure for dementia on screen. But we’re starting to see it.

“It’s almost impossible to act dementia”

Actor, director and writer Viggo Mortensen has watched the evolution of his parents’ dementia in recent years. He poured those insights into “Falling,” a fractious drama about Willis, a bigoted father (Lance Henriksen) in the early stages of dementia, resisting the help of his son (Mortensen). It hits some familiar beats, but the director says there were still opportunities to improve how dementia is represented.

“Most, if not all, movie depictions of dementia tend to show us a person who is confused,” Mortensen wrote CNN in an email. “In my ample personal experience, those who actually are confused most of the time are the observers, not the person with the disease.”

“We tried to present as accurate a representation of dementia as possible, showing a confused Willis only when absolutely warranted, and usually provoked by interference or correction from other people,” he adds.

Lance Henriksen and Viggo Mortensen as father and son in "Falling."

The task was challenging for the film’s star, Henriksen. “It’s almost impossible to act dementia,” he admits. As the caustic father raging against the dying of the light, he gives a bombastic performance tempered by frailties that everyone except Willis can see.

However, Henriksen highlights the unassailable gap between acting and reality: “it’s all the ramifications of (dementia), but not the thing itself.” Acting has its limits. Presenting an inside view of dementia is aided by other elements of filmcraft, and it’s in this area that the most exciting developments are taking place.

“The Father,” Florian Zeller’s adaptation of his play about a daughter (Olivia Colman) caring for her father (Anthony Hopkins) makes a cat’s cradle of time. Instead of proceeding in a straight line, events double back and undergo revision, each time creating a new present more uncertain than the last for Hopkins’ character (also called Anthony).

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Some characters are recast, and some actors appear in multiple roles, suggesting an inability to recognize faces. Anthony’s surroundings metamorphose; his London apartment (though is it his?) redecorates itself between scenes, mid-century furniture making way for modern, artworks swapped out, color schemes changing. Production designer Peter Francis has called the apartment “the third character in the film,” and told Variety “we wanted the set to add to his confusion so that you’re never quite sure where you are.”

Left: Peter Francis' set for "The Father" was redressed in multiple ways in the film. Right: Anthony Hopkins as Anthony, the lead in Florian Zeller's film adaptation of his own stage play.

It’s disorienting and increasingly distressing to watch as Anthony pinballs from one room and one conversation to the next, becoming progressively unmoored.

“The reality for the person with dementia is their reality – you can’t deny it,” says Karen Harrison Dening of Dementia UK, who has consulted various productions on translating the subject to screen.

“(It’s) something that clinicians grapple with,” she adds. “Whose reality do we respond to? Do we live in the person’s reality or do we try to shoehorn them into our reality?” Praising “The Father,” she says that aligning the point of view with the dementia patient “challenges the viewer to think what this (experience) might actually be like” and can be “so powerful.”

“Horror is the perfect genre to talk about fear”

Writer-director Natalie Erika James goes further still. In “Relic,” her debut feature, she utilizes horror to force this perspective on both audiences and the film’s supporting characters.

“Relic” centers on three generations of women in one family, brought together when the matriarch goes missing. Edna (Robyn Nevin) isn’t missing for long, but when she is reunited with her daughter Kay (Emily Mortimer) and granddaughter Sam (Bella Heathcote), the younger women are confronted with her erratic behavior.

Robyn Nevin as Edna in Natalie Erika James' debut feature "Relic."

James turned to the family home, a familiar genre trope, in search of metaphor. “I really wanted a sense that Kay and Sam’s characters were being drawn into Edna’s experience of Alzheimer’s through that space,” she says.

The house is plagued by creeping black mold and is filled with clutter (the director says she was inspired by a visit to her grandmother in Japan who had Alzheimer’s and had taken to hoarding). As Edna’s dementia intensifies, the mold spreads and the basement is transformed into a dank labyrinth. Her granddaughter, trapped inside this proxy for the condition, must fight her way out as the walls press in. It’s a terrifying, empathy-building exercise across generations on screen, and with viewers too.

“Horror is the perfect genre to talk about fear,” James says. “Being able to play in the surreal is something that really appeals to me. And, because of the commercial bent of the genre, it can help you to reach a broader audience sometimes as well.”

Writer-director Natalie Erika James on set (left) and with cinematographer Charlie Sarroff shooting scenes in the narrow labyrinth that becomes Edna's home in "Relic."

Finding a wide audience is something Kirsten Johnson achieved when “Dick Johnson is Dead” was picked up by Netflix. It’s a huge platform for what is in many ways an avant-garde piece of cinema – and the degree of experimentation might not be apparent to audiences. Because Johnson didn’t just seek to reflect dementia, she decided to involve it in the creative process.

Editing took place throughout production. Dick, she says, “was the editor who always saw material from a fresh perspective,” forgetting the last time he saw the movie and sometimes forgetting he was watching a movie altogether. But he always offered notes. Johnson and co-writer/editor Nels Bangerter continually re-cut to pull the film in line with that feedback. In some cases the original sound was redubbed to echo Dick’s memories, and the chronology is deliberately blurred.

By shuffling the timeline without signposting she is doing so, Johnson manipulates our reading of events. It means the Dick she presents seemingly escapes the progression of his dementia. It’s an illusion conjured by cinema, but far from a gimmick; it’s an act of almost unbearable wish fulfillment. The film, Johnson says, became a way to “keep my father alive forever, but also sort of put him back together.”

Dick, the subject of "Dick Johnson is Dead," on the set of a fantasy sequence used in the film.

“We have a duty of care, whether we’re the clinician or a film producer”

It’s not a coincidence that we’re seeing so many films about dementia, says Johnson. “We’ve gone through an incredible period of time in which people are speaking about traumas that have not been spoken of.”

She believes dementia has followed a similar path to post traumatic stress disorder and sexual violence, as supportive online communities have emerged and brave people have spoken out publicly, despite the potential for backlash.

Diversity of voice is also important; dementia on screen has been criticized for centering on privileged characters. Subjects are still predominantly White, but new films are bringing fresh perspectives. Kristof Bilsen’s recent documentary “Mother” examines caregiving with great poignancy, choosing to profile both Maya, a new resident at a home in Thailand for Western expats with Alzheimer’s, and Pomm, her Thai live-in carer.

Chutimon (Pomm) Sonsirichai  -- seen here taking care of Elisabeth Röhner -- is profiled in Kristof Bilsen's documentary "Mother."

A film about capitalism and economic inequality as much as the disease, Johnson served as executive producer. Institutional caregiving has come into sharp focus for her since Dick – who despite the title, is very much alive – moved into a care facility. “It is ripping me up,” she says. “I feel so bad I can’t take care of him anymore.”

“(Caregiving) is literally one of the hardest things to do as a human, but we’re not talking about it,” Johnson adds. “Talking about dementia affects the power structure. We’re paying people not a lot of money to go through hell to take care of people.”

Advocacy arose in nearly all the interviews for this feature. The hope is that through increased representation, some change might come for a set of diseases that, on a medical level, remain devastatingly inexorable. If art can’t cure dementia, it can at least help reframe how it is discussed.