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“How Do You Build Trust with People Who… Do Not Remember They Have Ever Met You?”: Louise Detlefsen on Her Hot Docs-Debuting It is Not Over Yet
It's Not Over Yet A feel-good film about end-of-life care for those whose minds have already departed might strike some as a radical notion. But no more so than the philosophy behind the Danish retirement home at the heart of Louise Detlefsen’s uplifting It is Not Over Yet, world-premiering at this year’s Hot Docs (April 29-May 9). With this latest project Detlefsen — whose last doc Fat Front delved into another unconventional subject, Scandinavia’s feminist body-positive movement — embeds, almost imperceptibly, in a female-founded, women-run facility. And one that covertly gives the finger to Big Pharma and corporate nursing homes by going back to basics and deploying “compassion as treatment.”
Indeed, far from depressing, the residents of this joyful haven spend their final days drinking fine wine and nibbling chocolate cake, visiting the chickens out back in the coop — even in the middle of the night if they so choose (though a helper will probably ask if they’d might like to put on a coat). Rather than dictate, to impose “acceptable behavior” or (our collective version of) reality on these folks with dementia, the caregivers simply listen intently and adjust “reality” to the residents’ version of it. It’s a process so gloriously humane – and sane – as to expose the true madness, that of drug-led geriatric capitalism.
Filmmaker reached out to Detlefsen the week before the doc’s digital debut to learn more about this Florence Nightingale-inspired oasis and how she received permission to film from its tenants that can’t consent.
Filmmaker: This is quite the departure from your last film, 2019’s upbeat, Instagram-hip, body-positive doc Fat Front. So what motivated you to turn 180-degrees to focus on a much quieter end-of-life story?
Detlefsen: I had never imagined myself doing a film about a nursing home. But as it often is in life, something might seem to happen by chance at first, but once you get started you understand the reason why. I kind of stumbled on the protagonist for this new film when I heard a radio interview with May Bjerre Eiby about her small nursing home for elderly people with severe dementia. She talked about having a life of joy and happiness if the residents were treated with compassion instead of medicine.
What really hit me on an emotional level was the philosophical approach to this horrible disease: If you live from moment to moment – and you make sure those moments are filled with the full range of senses, human contact, and happiness – all those moments give you a good life. Living in the moment is for me, as for many people in the modern world, a very hard thing to do. Always being busy and planning ahead takes us away from being present and feeling the people and the world around us.
I felt an urge to explore this “compassion treatment,” and to see for myself if this happy life without medicine could really be true. It seemed like a giant leap from my prior film about being fat and rebuilding self-esteem through body activism. But coming into the home, and starting to observe the residents and finding my protagonists among the people with dementia, I suddenly understood why I wanted so much to do this film. Because this film is, like most of the documentaries I have done, about our need to belong. To be part of a community. To examine what it is like to feel lonely living in a big world – and to find acceptance in an activist community – was actually connected to moving into a nursing home against one’s will. And to eventually being happy and living a life of balance because of this same sense of community and belonging. Emotional contact, and our deep inner need to feel each other as human beings, has always attracted my attention. My films are all somehow connected to this personal theme.
Filmmaker: How did you go about gaining permission to film, especially from these residents with dementia who no longer have the ability to even grant consent?
Detlefsen: How do you build trust with people, who after half an hour or only five minutes, do not remember they have ever met you? This was a completely new challenge for me and my filmmaking, as I rely in so much on this process of getting to know people and slowly building trust.
In the day-to-day shooting, when the cinematographer and I arrived, we would seek eye contact to get a nonverbal understanding and permission to film. But in the very beginning I felt the most ethical way was to get permission from the residents’ children, even if not all of them were legal guardians of their parents.
So I arranged meetings for all the relatives, as well as visited each family on its own, once I knew which residents would be the film’s main focus. I told all of the residents, who were legally in charge of their own decisions, about the documentary in a simple way, and they all signed a piece of paper agreeing to participate. But the next day when we came they would look at us with surprise and greet us as newcomers.
So it was crucial for me to have the trust from May, the staff, and the relatives all the way. In the agreement signed by the relatives I wrote that I would not film their parents in a derogatory manner. And with this in my mind, we also could feel free to film in very intimate situations — in the bathroom, going to bed, and even during the very last washing before a resident died.
Showing the film before picture lock was overwhelming. The families all became very touched when seeing their parent (or parents). But they were also very enthusiastic about the film and its message. That was such a relief.
Filmmaker: In lieu of swallowing pharmaceuticals the residents are urged to sip wine and eat tiramisu, hug trees and listen to the crackling flames of a cozy fire. So can you talk a bit about the doc’s overall aesthetic? Your use of cinematography, music and sound design seem consciously crafted to highlight the sensory-centric caregiving we witness throughout the film.
Detlefsen: The aesthetics of this film sort of grew out of my very first experiences at Dagmarsminde. Coming through the gate and into the living room, where the residents live their lives like a big family, always made me breathe out and relax in a very physical manner. To me it felt like visiting my late grandmother in this small bubble, away from the noise and demands of the outside world. It felt as if time was running slower inside Dagmarsminde, and as if the residents, guided by the staff, would observe all the details that we busy people tend to overlook. The stroke of a hand, the cat in the hallway, the colors of the fresh flowers in a vase. One would play the piano in a repetitive way; another would knit while repeating to herself the same word over and over. So I wanted the camerawork and the editing to reflect this slow movement and focus on the senses.
At the same time, people with dementia react without forewarning, often in an impulsive manner. So together with the cinematographer we decided to be very flexible — working handheld, with myself recording the sound. But at the same time we wanted to have a calm and gentle camerawork, so we worked with a long focal length and slow pans to keep the pace down. At other times, not being able to predict or to in any way direct the scenes, we would position the camera on the tripod and simply just wait for something to happen within the framing. This demands a great deal of time and patience but one of my favorite scenes, with two of the residents discussing the time of day, is a result of this.
Also, we worked with very long takes, and slow pans and tilts, to emphasize the compassion. I wanted to create the film in a way that would feel gentle and somehow a little divergent from the more conventional way of storytelling. In post I tried to disrupt my inner logic by editing the last 20 minutes first, and then picking my favorite scenes almost randomly to try to make room for the feeling of living the very last part of your life in a different perception of time. Living with dementia is a loss of control. We see this in the film with the protagonist Torkild, a stately old gentleman who fights an impossible fight to stay in control. Gradually he accepts dementia, and the new and basic joys of a life not led by logic.
We really tried to reflect the residents’ simplicity and joy in the aesthetics. Also, sound was something I wanted to integrate more emotionally than I’d done previously in my other work. Because dementia makes some more sensitive both to touch and sound, we decided early on to use sound design in scenes where we would normally use music. We especially wanted to incorporate the nature sounds — the wind, the birds, giving the trees a feeling of life and movement — so that there is an undercurrent of nature throughout the film that reflects the natural and holistic treatment.
Filmmaker: It struck me that not only was this facility founded by a woman, and the entire caregiving team (save for one drop-in doctor) made up of women, but that the “compassion as treatment” approach was also begun by another woman, Florence Nightingale. So considering you and your producer Malene Flindt Pedersen have long been involved with female-focused stories (and storytellers), do you see It is Not Over Yet along this feminist continuum?
Detlefsen: I work quite intuitively in terms of getting involved with a new documentary. It is a bit like falling in love — a cliché maybe, but still the best way to describe how I feel attracted to a story. I am driven by emotion and curiosity. I do not reflect so much on why as on how and when. What I am trying to say I guess is that, yes, it is not unintentional that I make films about women and with female protagonists. But it comes out of a feminism that is kind of a natural part of my life – and not so much a political or intellectual decision.
My parents got divorced when I was 6, and I quickly lost contact with my father. So I grew up with my mother and my little sister, and spent my holidays with my mother’s sister and her daughter. My life has always been filled with almost only women and very few men, so it just feels natural to work with women. I am simply often more interested in exploring female stories than stories about men.
My documentary-making involves telling stories about people around me, but it reflects my personal issues and story. Somehow I feel good and safe with women. The last 20 years I have worked with female producers, and it is the best. Maybe one day I will get the nerve to do something about the longing for a father, but it hasn’t happened yet. (Although I feel somehow that Torkild, the resident whom I follow from the day he moves into Dagmarsminde, does represent a kind of father figure.)
Filmmaker: So is there a movement, either in Scandinavia or globally, to duplicate this unique caregiving facility? Honestly, I fear the mass corporatization of eldercare might ultimately prevent any humane idea from scaling up.
Detlefsen: I am not an expert in dementia, but I believe there is a counter reaction coming. A reaction against the way eldercare has developed in the last decade with large facilities, tight time-management, and a focus on digital and electronic devices to help and stimulate old people with dementia. Robot seals and iPads to communicate your needs to! Artificial intelligence is on its way to changing so many aspects of society. And the respect for the residents’ privacy and individuality has created nursing homes where a lot of the people with severe dementia spend most of their time alone in their rooms, feeling lonely and confused.
But at the same time I also observe a different wave, with a focus on all kinds of natural and holistic treatment. Acknowledging that we as human beings are dependent on each other, as well as deeply connected and dependent on the nature around us. That the power of compassion is kind of a hidden superpower that we can use to take care of people with dementia, who are some of the most vulnerable groups in society.
Right now Dagmarsminde is unique in Denmark, being completely managed according to this “compassion treatment” that May Bjerre Eiby has developed, which is inspired by Florence Nightingale, the Danish philosopher Løgstrup, and a Norwegian nursing philosopher named Kari Martinsen. It’s a frontrunner in reducing almost all medicine when new residents arrive.
I also believe that community is a cornerstone in the happiness I have seen at Dagmarsminde. Hopefully my generation, when we get older, will insist on an eldercare in which we get to live in small close communities, where we are together and feel the joy of community. Hopefully this film, and the books written by May Bjerre Eiby, can inspire other nursing homes to begin using compassion as treatment.
