DIRECTOR'S INTERVIEW

Dementia is a social problem that is forecasted to increase in the near future with our rapidly ageing society. "Do you know what my name is" is a documentary that shows how a disease like dementia, with no specific preventative measures or treatment can be improved by 15 minutes a day of reading and writing therapy.
This documentary shows how this method gave hope to dementia sufferers, their families and those around them. This interview will focus on the changes that the film's director, Naomi Kazuma, witnessed over the six months that she spent at the nursing home where the learning therapy was being conducted in Cleveland, Ohio.
Naomi Kazama
Director
Interviewer: Kyoko Tsukada

Prior to the filming, what was your perception of dementia ?
Before the filming I only had a general understanding of dementia. I did not know anyone with dementia around me and my perceptions were heavily influenced by how the media tends to focus on the difficulties of dementia care. When I learned that I would be working on this film, I wanted to learn more about dementia patients and their carers, so I read Dr. Kawashima's academic journals and viewed many different films about dementia. I also visited an elderly care facility in Japan that was conducting the learning therapy, but I was still initially very unsure as to how to proceed with the project.
How frequently did you visit Cleveland ?
From May until November 2011, I visited Cleveland about once a month for around a week each time to cover the learning therapy progress closely. I also visited in December 2011 and April 2012 in order to see the amazing progress of the learners with my own eyes. It was the first time that the learning therapy had been put into practice overseas and we were all very nervous, so I spent quite a bit of time caring for and running errands for others. At the beginning, we had no information about the residents of the nursing home, Eliza Jennings. We got the first basic profiles of each of the residents after the first filming had ended. While it was just a small amount of information, it finally allowed us to put names to the faces. However, getting the information later on did allow us to experience the facility and meet everyone without preconceptions, so looking back I think it was a positive. The learners, staff and families were initially a bit uneasy about how we Japanese, who spoke a different language and had a different culture, would be filming, and conducting interviews. We didn't want to disturb them, so we worked hard to put them at ease and build positive relationships. For example, when we heard "When they are concerned about something, they will stop eating immediately", we decided to try different camera angles and designed each of the filmings around the needs and preferences of the learners. Mr. Ryuji Motoyama, our coordinator, was a great help in collecting information and helping us to build trusting relationships with everyone at Eliza Jennings.
How did you decide whom to film ?
I relied mainly on intuition when deciding which of the learners to focus on. Since we were unable to interview the learners directly, our cameraman, Mr. Katsumi Matsumoto was very helpful in gathering impressions through what he saw through the viewfinder. He was very enthusiastic and always smiling, which I think helped to put the residents at ease and allowed us to see many smiles in return. Evelyn was initially uncomfortable with the camera, but had grown more comfortable when I visited a month later and started interacting more with the camera. She was incredibly helpful and kind, speaking with us and trying hard to understand our English, despite our Japanese accents. Being with Evelyn I felt at ease as if I was with my own grandmother, and it was thanks to her that I was able to gain more confidence about our project.
Visiting Cleveland at fixed intervals once a month, was it easier to get a clear impression of the changes in the learners ?
The learners did take breaks when they were not feeling well, but everyone happily participated in the learning therapy trials. Of course John and the support staff experienced the changes in the learners, but I, who visited periodically once a month experienced an even greater level of surprise at the changes in the learners. At the beginning, a lot of the learners were experiencing depression and had a tendency to spend a lot of time in their rooms. However, when I returned a month later I received high fives and was warmly welcomed - the learners had become very socially open. The female learners had started to style their hair, and Evelyn started to put on lipstick after eating - the learners had gained more confidence in themselves. It was at that time that I felt that I had met the real Evelyn. These women, who paved the way for gender equality, were regaining their individuality and independence. I felt a strong sense of the underlying strength of women. Unfortunately, there was one learner who passed away during the filming, but their family said that they were happy that they were able to shine right up until the end. While we initially heard comments from families like "I just want her to live safely" and "As long as they are living", I think that the families were overjoyed when the learners were able to regain themselves - something that they originally didn't even think was possible.
There was a limit on the amount of the recording allowed, so you relied on John Rodeman to report on the changes and also do the narration in the film.
Basically, the on location filming was limited to the times when we were allowed to be with the supporters, and we could not spend whole days at the facility. John was mainly involved in maintenance of Eliza Jennings before the project began and offered to participate in the learning therapy experiments to witness and report back on the changes in the learners. He had not spent a lot of time with the residents prior to the filming, but he enjoyed speaking with them. When he was first asked "What do you think about dementia", he said "dementia is a scary thing". I felt that his response was very similar to how I felt about dementia at the time, and I knew that we would work well together. If it was someone that was very knowledgeable about dementia, they may see the changes of Evelyn and May as simply expected results of the learning therapy and not as amazing changes. Every time that we visited, John told us in great detail all the minute changes that he had witnessed and been moved by. He was looking for another job at the time, but as he experienced the learning therapy, and was moved by the changes of the learners, he realised that he wanted to be a supporter. I would like to express my heartfelt thanks to all the learners, supporters and staff that helped with the interviews and production of the film.
Were there any changes in the filming or production due to the fact that the film was filmed in the U.S. ?
Dementia is a very serious topic. Because of this, I never had the intention to make a dark film. Instead, I wanted to express the human side of dementia - the everyday difficulties that those with dementia face such as "I can't write my name" or "I forgot that I had a granddaughter", while also expressing the warmth and enthusiasm of the carers. As the filming was conducted overseas, I wanted to make it a film that could be enjoyed by those around the world, and I also wanted to challenge myself to make a foreign style film. I consulted with Mr. Hiroshi Takeda to achieve this. What we found particularly difficult was the question of how much detail to put into explanations about dementia and the therapy. The changes of the learners are not something that you can understand at first glance, so we ended up extending the cuts for longer than usual. However, Mr. Roger Pulvers provided us a western point of view and said that extending the explanation would only restrict the imagination of the viewers. This struck a chord with us and afterwards I went into the editing room with Mr. Jun Mizuno and began a long process of trial and error to achieve the perfect cut.
It seems as though the film has been received very well overseas.
The film received its first award at the American Documentary Film Festival. When the result was announced, our producer, Mr. Shigeru Ota and Mr. Motoyama initially did not notice that the film had won - it was really an unexpectedly wonderful result. After that, there was the Cleveland International Film Festival. After the showing of the film, when the audience gave the film a standing ovation, I felt that the hard work of all the people who had participated on the project was being rewarded. We received comments like "I have a family member with dementia and your film gave me hope. Thank you." and "there are plenty of films that paint a dark picture of dementia, but its no use only knowing one side. This film's brightness makes it stand apart from the rest." These comments made us feel as though our film had given hope to those that saw it. This film is not a representation of all those suffering from dementia. However, as dementia is becoming a more and more common issue to those around the world, it is important that we work together with dementia patients to help them regain themselves and increase awareness about the wonderful work of their carers.
In reality, everyone's condition has improved and they are getting happier and brighter everyday.
The main point of the learning therapy is increasing communication. The program is conducted with a pair of learners and one supporter, and conversation naturally occurs - strengthening the bonds between participants and increasing sociability. What was particularly surprising was that we witnessed changes not only in the learners, but also in their families. Evelyn's daughter's smile grew as she spoke with her mother. Even if a son or daughter of a dementia patient is aware of their parentfs condition, they can't prepare for or believe the increasing symptoms that are often experienced. However, thanks to the learning therapy, learners were able to regain lost time and ease the symptoms of dementia. In my eyes, the time that families were able to regain was a sort of preparation for the end. "One more time, I want to be encouraged by my mother", "I want to take my mother to her favourite ice cream parlour again" The ability to relive their past lives once more - I think that that is what the learning therapy is to the families.