An elderly woman stitches tangles of red yarn into tight little knots. While her muscle memory whirs away, her memory falters. The nurse beside her does not correct her, as is the prescribed approach in the unusual care home at the heart of the new documentary It Is Not Over Yet.
Director Louise Detlefsen was biking through Copenhagen, listening to the radio, when she first heard of a nurse named May Bjerre Eiby and a living facility called Dagmarsminde.
“She was saying that people with severe dementia could actually have a very happy life, if they were treated in the right way,” said Detlefsen. “I thought, wow, is that really possible? That was what made me call and ask for a meeting.”
At Dagmarsminde, the staff work to make residents’ final years comfortable and pleasurable, with as little medicine and as much cake as possible. Their approach of “compassionate care” subverts the standard approach to treating dementia, which relies heavily on medication like antipsychotics and attempts to re-ground patients in reality.
Making a film inside a facility of elders living with dementia posed a number of challenges. When Detlefsen first approached Eiby, she needed to gain her and her staff’s trust, which had been eroded from quick-hit TV segments framing the home as a novelty in a one-dimensional, feel-good light.
“It was important for me that she also wanted to show some of the complex situations in our home,” said Eiby. “I wanted to show what is difficult about life with dementia and about working here as a caregiver, giving all you can of your own love to these residents.”
Once the Dagmarsminde staff were on board, Detlefsen ensured residents’ relatives were comfortable with the film, as well as the residents themselves. Every day, and sometimes multiple times a day, Detlefsen would explain her presence and ask for their permission to film.
“Some of the residents would come up to us and say hello and ask who we were, even though we had been filming them the day before,” said Detlefsen. “But some days, they would just react as if we were part of the place.”
One of the most common hiccups in day-to-day filming, Detlefsen said, would be a resident’s discovery of their microphone’s battery pack in their pocket. Bewildered, they would wonder how it got there. Other days, they would ignore the camera completely.
“If somebody got irritated, we could always stop filming. It was really about feeling it from day to day,” said Detlefsen. “May could also always tell us to stop filming if something was not really working.”
It helped that the crew was small. Detlefsen and her husband and cinematographer, Per Fredrik Skiöld, would quietly observe, floating around the grounds with a handheld camera. They spent over a year filming life at the Danish care home.
It Is Not Over Yet’s verité gaze embodies the gentle atmosphere of Dagmarsminde. The camera lingers on details that make it feel like a loving home–fresh flowers on the dining table, a plate of finger sandwiches being carefully arranged on good china, candles burning. An orange cat wanders the hallways at night.
There’s a fully stocked bar cart, an abundance of plants, and a golden retriever snoozing at the foot of the table as everyone eats dinner. The mise-en-scène of the home is what the Danes would call pure hygge — contentment — down to the nurses’ striped, pajama-like robes.
This film is fully embedded in the care home, without any talking heads or outside perspectives. This immersive approach makes a strong, emotional case for this kind of compassionate care.
It’s important to note that Dagmarsminde is the first and only facility of its kind in Denmark, and it has a sometimes-controversial approach to medicine. Residents are weaned down to about one medication a day, compared to the average of eight to 10 pills that the film cites as the average intake at a standard nursing home.
The film also captures the difficulties of working with dementia and death. Some of the most challenging moments to capture, for both Detlefsen and Eiby, were on residents’ move-in days.
“That situation is very stressful for the resident, for the family, and also for the staff, because you have to really think about how to get the resident to feel calm,” said Eiby.
“When you have a film team on your right hand, and on the left hand, you have a whole family and their distress and their sadness and all their questions, it’s a little bit difficult. But I think we managed quite well.”
Death is another difficult, and inevitable, part of life at a nursing home. The film sees two funerals, and even captures one woman, Inger, in her final moments.
“I was nervous about it. We had talked about how people would die when we were filming, and if the relatives would allow us, we would try to follow that process,” said Detlefsen. “I was anxious about it beforehand, but actually when we were in it, the way that the staff dealt with that period of time and the last days was so gentle. I didn’t feel it was difficult at all.”
Inger’s daughters had boxes of eight millimetre film–home movies from their childhood–that Detlefsen developed and interspersed with her last moments on film. In them, Inger frolics with her young children on the beach, grinning for the camera.
“It’s a very important scene, because it shows us that the residents have had a full and normal life,” said Eiby. “For me, it was really moving to see my resident touching the hair of her toddler. It was telling me, please remember who your residents are at the time you’re together with them.”
Close to home
One of the most poignant moments in the film is Eiby’s own experience with dementia, which is also the origin story of Dagmarsminde. Her first experience working in a nursing home, at age 17, frightened and saddened her with the state of decay and neglect. It inspired her to become a nurse, as she explains to an audience in the film.
Years later, her father developed dementia and was sent to the same home that had left its mark on Eiby as a teenager. He was neglected and died there. The now 39-year-old nurse saved for years to buy land and build Dagmarsminde, where she gives residents the care and attention her father never received.
“When we had the biggest challenges, we didn’t notice the camera at all, because in those situations you are really focused on your work,” said Eiby. “Those were actually easier to be filmed in than when we would just be sitting and eating or something.”
Detlefsen says her perspective on dementia evolved dramatically over the course of filming, and she hopes the film challenges misconceptions once released into the world at its Hot Docs premiere.
“We always hear about dementia from the point of view of the relatives who are losing somebody to this disease. It’s a lot about the diagnosis. We fear dementia,” said Detlefsen.
“I hope this shows that when you are the person with dementia yourself, if you’re really taken care of, you can actually have an enjoyable life. That was new to me. Hopefully, that can be inspiring and interesting for other people too.”
It Is Not Over Yet will have its world premiere at Hot Docs’ online festival beginning April 29.