'A person with dementia becomes untethered from time'

A lifetime of making documentaries has convinced award-winning filmmaker Kirsten Johnson of the power of the real. But now she's ready to use every escapist movie-making trick in the book – staging inventive and fantastical ways for her 86-year-old psychiatrist father to die while hoping that cinema might help her bend time, laugh at pain and keep her father alive forever.

Dick Johnson is Dead is a love letter from a daughter to a father, creatively blending fact and fiction to create a celebratory exploration of how movies give us the tools to grapple with life's profundity. 

Why set out to make a comedy about something so potentially sombre? In the film you mention being scandalised by a Mel Brooks film as a 12-year-old, and loving it at the same time. 

By the way, I do think you succeeded… 'Let's all only use the words "fake blood"' was a personal favourite even though, in terms of how Dick seemed at the time, it was probably one of the saddest moments of the film.

My previous film, Cameraperson, is made of footage I had shot over 25 years of being a documentary cinematographer for other directors. It's an intense movie in which I wrestle with the ethical conundrums of filming. There's only one laugh in it! As I watched the film over and over when it was on the festival circuit, I kept saying to myself, 'My next movie has to be funny!' Little did I know I would be making my next film with my Dad in order to cope with his dementia!  

Throughout my life as a cameraperson, I have filmed in many post-conflict zones and witnessed how profoundly trauma and social injustice affects people. But one thing I have marvelled at, and learned from many of the survivors of violence around the world I have spent time with, is that many of the people who suffer the most in this world really know how to laugh. They have faced so much difficulty that somehow they have found their way to humour as a survival mechanism. I have laughed hardest in some of the most difficult places that exist in the world. 

Having grieved my mother's Alzheimer's for the seven years of her illness and then for all of the years since her death in 2007, when I woke up to the fact that my beloved father was facing dementia, I knew I wanted to turn to cinema and to humour to help me face the pain.

Could you have made the film without the 'imaginary death scenes', or was this ultimately about not turning away from things that are difficult to see, about facing the fear of losing each other and 'defiantly celebrating our brief moments of joy'?

The idea of 'facing the pain' runs throughout my filmmaking life. But its source is love of other people. So many people have suffered in such difficult ways through no fault of their own and yet still feel unseen and unrecognised in their struggle. Given my wish to be a part of a documentary tradition which looks at the roots and consequences of social injustice, I have thought a lot about how images might have power. The concept of 'the indelible image' and how such unforgettable images are filmed is often on my mind when I work. The thought of seeing images of my own father 'dead' (even though they are staged by me) felt remarkably frightening and strangely empowering. If we could create an image of him 'dead', then we could also bring him back to life. The one thing I wished after my mother's funeral was to hug her. By filming my father's 'funeral', I was able to experience just that 'post-funeral hug' with him! 

It is not uncomplicated to 'not turn away from things that are difficult to see' – in fact, it's very ethically, emotionally and psychologically complicated! On a societal level, I believe we really bear the terrible consequences of not facing the violence of discrimination and neglect when we deny that such things are happening. We are really at a moment in human history when we desperately need to face things that are difficult to acknowledge.

'He's happy, he's laughing no matter what.' That must be so rare in dementia. I thought the scene about your Dad not being able to have his car anymore was just jaw-dropping, in terms of how calm and reasonable your Dad was despite the fact that he clearly suspected there was more to it than you were letting on, and that this was a big deal to him. Was this a sanitised view of dementia, or have you just been very lucky? 

It wasn't sanitised. I am incredibly lucky! My father remains strangely lucid about his own dementia, incredibly open about his fate and truly trusting of me as a person. I have seen how dementia can transform lovely people into intransigent, angry, terrifying people. That hasn't happened with my father. He can be incredibly emotionally vulnerable, I have seen his unabashed fear, I have also seen him be pouty and stubborn, but he always remains gentle. 

I imagine the car was a big deal because it represented independence, and identity. I noticed that one of Dick's books was 'The Challenge of Youth' by Erik Erikson, the developmental psychologist and psychoanalyst probably best known for coining the phrase 'identity crisis'. It stood out to me because if anyone seems secure in his identity it's Dick. Do you think he managed to hold on to that despite the dementia?

I am deeply fascinated by the question 'What is a self?' My father, at age 88, now deep into his dementia, is still utterly himself. Parts of him have been lost – his capacity to know where he is, what time it is, what question I just asked him, but he can still express his delight in me, his love for me and his extraordinary compassion, self-awareness and sense of humour.  

When we were making the film, I was terrified that I had started too late, and that the dementia had already robbed him of too much of himself, but as the film began to come together, I was thrilled when I realised we had 'captured' the essence of him! The film is an act of trying to help him hold on to his identity.

Do you think the fact that your Dad was a Psychiatrist has had any bearing on how he faces up to dementia?

When my mother was diagnosed with Alzheimer's, I really struggled with the feelings of being betrayed by her – as if she had control over what was happening to her. I remember many conversations with my father, in those early days of grappling with my loss and fear, in which he steered me towards the recognition that Alzheimer's was a disease and that we must love my mother with patience instead of blaming her for what was happening to her. I remember thinking how utterly remarkable it was that he had the capacity to do that even as he was losing the wife he loved. 

My sense is that my Dad's experience as a psychiatrist taught him a lot about how to have compassion for humans who suffer from the many forms of mental illness and degenerative disease. It seems it also taught him how to compartmentalise and how to enjoy life despite the terrible suffering of the world – my Dad would go to work every day and then come home and enjoy his family every day. He's always looking for a laugh.

An interesting tension in the film is between your Dad's ability to live in the moment, the here and now, and your own focus on what is coming… that you will have to leave him, 'somewhere, someday, somehow'. Did that change at all, did you 'meet in the middle' more than viewers might have appreciated? 

Thanks for this question. I think a lot about Time with a capital T. In my role as a cameraperson, I really have to live in the moment. It's the job of the director and the producers to worry about getting me to the place where I will film and getting me on to the next place. I am tasked with being fully focused on the now that is unfolding in front of my lens. In this way it is strangely connected to the ways in which dementia changes one's relationship to the present. In the edit room of a movie, we play with time – we can put moments out of order, we can stretch moments and distill them. With Dick Johnson is Dead, we were really interested in the present time of aliveness and the unknowable future time of death. How could cinema language help us express the relationship between the known and the unknown, the present and the future, the documentary evidence and the imagined fantasy? It is in some way an attempt to engage with the structure of dementia and the way a person who experiences dementia becomes untethered from time itself.

You talked of the 'long goodbye', the 'beginning of his disappearance', and that you are 'not accepting it'. Yet in 'holding each other close as it gets messy', in understanding that 'we all carry our parents in us', there are glimpses of that acceptance in the film. In those terms, what's your advice to others who have relatives with dementia?

I send epic amounts of love to anyone who has a relative with dementia. I think each person's dementia is specific to them and that each person who loves a person with dementia will have their own experience of it. Value what is specific about the person you love and notice how the form their dementia takes is related to who they are as a person in mysterious, heart-breaking and beautiful ways. 

It is such a baffling and often emotionally brutal experience to love someone with dementia. And when I say 'often' I mean often because a person with dementia may tell you the same thing over and over again hundreds of times over the course of a few hours. It is inevitably wounding – because it means facing over and over again that the person you love is shape-shifting and that their relationship to you is becoming increasingly endangered. Accept that they cannot control what is happening to them. Marvel at all the things that are revealed to you about the mysteries of memory, self, time, and love. Laugh as often as you can. Maybe record something with them – whether it's audio or video. This record will help you remember who they were after they have changed more than you ever dreamed possible. 

Be kind to yourself. Being the caregiver and the beloved of a person with dementia is a long haul. I've recently decided that I think grief never ends but if you allow it to be full of love, creative stimulation, intellectual curiosity, tenderness and accept all of its possibilities for absurdist humour, it will be a remarkable companion through your life and the person you love will live forever.

- Watch the trailer now, and find the film on Netflix.