YOUNG-ONSET DEMENTIA affects around 4,000 people across Ireland. When people develop dementia at an early age, it brings with it a whole host of issues – what will the impact be on yourself and your family? What should you do about employment? If you have children, what should you do or say?

In recent years, organisations like the Alzheimer Society of Ireland have emphasised that when it comes to dementia, dialogue is important. Rather than hiding the issue – or the people affected by it – away, the emphasis is on talking about it, and sharing experiences.

Now a new film called Supernova, directed by British native Harry Macqueen and starring Colin Firth and Stanley Tucci, explores the impact of young-onset dementia on a long-term couple.

Firth (A Single Man, The King’s Speech) and Tucci (Julie & Julia, Spotlight) play Sam and Tusker, a couple for over 30 years who have recently received news of Tusker’s young-onset dementia diagnosis. The film follows as they take a trip around England’s Lake District in their camper van, visiting friends and family as they gear up for a piano recital by Sam.

It’s a gently-told story, one that doesn’t rely on treating the subject either too heavily, or with kid gloves. It comes, too, after Macqueen (director of Hinterland, and also an actor), spent years researching dementia and its effects on people. He spent time with people to see how they coped, and from that knowledge crafted the story of Sam and Tusker. 

Stanley Tucci, Harry Macqueen and Colin Firth

When The Journal spoke to Macqueen, I told him that the film brought me to tears. “It was always hopefully going to be a film that was going to move people in lots of different ways,” acknowledged Macqueen.

“I think had the film not had a big emotional response for an audience then we’d probably have done something a bit wrong. But I think it’s testament to how hard we worked to, you know, to make it so kind of natural. I think that’s one of the reasons people are responding to it in the way they are.”

Did he feel pressure when telling such an important story, given the impact dementia can have on people’s lives? “Yeah, absolutely. And, you know, I still do, to be perfectly honest. The film emerged from a really intense, quite long period of investigation and just spending time with people that are living with this kind of diagnosis. And I think, once you make the decision that maybe you’re going to try and make a bit of fiction out of it, to put it bluntly, you really have to make sure that you’re doing it for the right reasons, and that everything that you do is hopefully striving at least to sort of speak for the people that are living this kind of experience,” he said.

I think one of the things, the difficult challenges, really, is that you can’t tell everyone’s story, nor should you. You’ve got to tell your own story within the remit, within the sort of landscape of what you’ve experienced. But the feedback from people that I’ve worked with or people that are living this life has been incredible, which is really nice.

Unravelled

Tusker has what’s called Posterior Cortical Atrophy, a type of young-onset dementia where people experience a progressive decline in vision and/or literacy skills,
but often preserve their memory in early stages.

“Outwardly, Tusker’s life seems pretty normal most of the time, but inwardly he’s being slowly and absolutely unravelled by his condition,” said Macqueen. The fact that Tusker is a novelist only adds to his realisation of the illness’s impact.

The film title reflects how a supernova (the massive explosive event at the end of the evolution of a star) is to Macqueen “ representative of Tusker himself – a man
who shines bright in all he does, brings light and laughter to almost every situation and is, of course, dying. It’s quite literal in that regard, really; he knows his final chapter is just around the corner.”

Though the plot involves Tusker’s diagnosis and how the pair cope with it, Macqueen doesn’t see Supernova purely as a ‘dementia movie’.

“I think the thing is, for me, it’s a love story. And the context is dementia. I think that’s really important. There’s lots of films that are dementia films, and there’s nothing, absolutely nothing wrong with that. But actually, you know, that’s not really what I wanted to tell as a story. And it’s not actually really what I experienced either when I was at times living with people who are going through this kind of thing.”

What Macqueen found himself “really fascinat[ed]” by was “how love changes, how intimacy changes; how a bond is weakened or strengthened or how you have to adapt”.

“And I hadn’t really seen that before, actually, certainly not in the ‘dementia films’. I think, that journey, really, really complex journey from lover to carer from an equal partner in a relationship to the opposite of that… That’s actually the journey that I thought was unexplored in cinema. And also it’s happily the thing that fascinates me most. So it’s a marriage of the two, I suppose.”

In Supernova, we know that both men are coming to terms with Tusker’s diagnosis, but they are at different stages. They have begun to record conversations, indicating that they are willing to speak about it. But Sam is having to deal with moving from lover to lover-carer, and is devastated by the impact the illness is having on Tusker. Tusker, meanwhile, is quietly working out for himself how to move through life with dementia. 

The gentle feel to the movie is enhanced by its cinematography, which captures the huge scale of the gorgeous Lake District, as well as the intimacy of life in a camper van. Working with Macqueen on capturing the autumnal beauty of the area, as well as making the audience feel as if they are in the camper themselves, was Dick Pope, a longtime collaborator of Mike Leigh. The score is by Keaton Henson, who excels at creating classical-orientated music that captures a brittleness of human emotion. 

What Sam experiences in the film is a journey, a journey “you go on as a family member or as a lover, when someone you know, or your partner has this kind of diagnosis”, said Macqueen. “It’s inspiring, to be honest, and, of course challenging and complex when you’re watching it. But mostly, it’s inspiring and life affirming. And I think that’s really the kind of film I was hoping to make.”

This is Macqueen’s second film, and it’s quite a coup to enlist talent like Firth and Tucci at such a stage in his career. “Yeah, it’s always good to find new talent when you’re making a film…” he joked.

It was Tucci who came on board first, tempted by the script. He then suggested Firth to Macqueen – the pair have been friends for over 20 years, and Tucci felt they would work well together. 

Tucci thought the script was “so beautifully written. It was at once real and poetic and there was no fat on it. It was incredibly pure.”

You felt that these were two people who had been together a very long time, and there was no imposition of exposition in that; it just sort of unfolds and you figure it out. But the key thing is the connection between the two characters, because if that feels real, you’ll go anywhere with them. And it was truly a character-driven piece.

Intimacy

The real-life relationship between the pair adds to the intimacy of the film; the sense that these two men have lived a long life together. Questions have been raised, however, about the fact that it is two straight men playing a gay couple, and both actors have said they’ve received positive support from within the queer community for their roles.

Macqueen said that both actors “just commit so fully to what they’re doing”. “They’re very compassionate about every character they play, empathetic. And that was essential for something like this,” he said.

“And also they think, really, really long and hard about what they say yes to. Colin [Firth] talks a lot about how you should sort of really rigorously examine whether you’re the right person to be to be portraying that lived experience. So I think that that’s amazing that they operate on that level.”

He said that their long-standing relationship was both helpful and a challenge, ”because you have to sort of get rid of the stuff that you know about that person that isn’t relevant to the situation. But it certainly helps that authenticity is there right from the start. Because they trust each other so intimately.”

The film is light on exposition, allowing us to figure out the characters and their back story through dialogue and mise en scene. “I really like an audience to be sort of thrown into a relationship and just believe it right from the start,” said Macqueen. “But that’s, of course, that’s really challenging to write and to perform and to shoot, everything about it has to be right, from the art direction onwards. It’s like building that world, and the history within that world is a real team effort.”

“Of course, it helps that Colin and Stanley are great actors, and they can take you there instantly. But in that said, It all has to come from the writing, that’s the honest truth of it. I mean, it all has to be in the script, I think.”

And I worked really hard over quite a long period of time to make sure that that felt hopefully kind of effortless and not forced. Hopefully nothing in the film does feel forced. I think that the lightness of touch is its power actually for me.

He and his production team put a huge amount of work into turning the couple’s camper van into a reflection of their lives. The filming was done within the van, which wasn’t cut up or pulled apart – the camera person was in the back filming as they drove along. As the weather during the shoot was often terrible, they were able to use a studio to film in too.

“We just made sure that the detail was there all over it. So if you look hard, there’s books written by Tusker, the name of the camper van is painted by one of them and is up by the cooker. And it’s all just detail, detail, detail, really.”

Initially, Macqueen wrote the couple in Supernova as a heterosexual couple, but then changed it to a gay couple. What might seem to be a great choice takes on even more potency when the director describes the reaction this received in some countries.

“I think one of the reasons I did it is because we’re talking about it now, because there is a need to still talk about it. Ultimately, you know, you want to make important original cinema, well I do if I can, so that’s one of the reasons really,” said Macqueen.

“We were talking before about how specific the film is, in a way, but it’s also incredibly universal, you know, love and loss and companionship and end of life choices, and all of those things aren’t owned by a gender or sexual orientation. And you’re right, like, sometimes the most powerful political acts are the simplest ones, the smallest ones.”

“Well, it’s not for me to say, but I humbly say that what’s a little bit groundbreaking about the film is how it displays that relationship. It’s never mentioned, it’s not part of the narrative. It’s just two people who are in love who happen to be both men. And I think there’s a real simplicity to that that is massively powerful. And it’s echoed around the world…

I was having a Zoom interview with someone in Poland the other week, a journalist. And he was basically saying, watching this film in Poland is like watching an alien planet. It’s like, [he said], these stories do not exist in my country. The film has played everywhere – the biggest cinemas in Russia – and I think that’s really important. It’s meant a lot to that community, I think.

Supernova is out in selected cinemas now.