The origins of Another Presence began during the production of my first documentary project, ‘Do I See What You see?‘ . The film was about people with a rare form of visual Alzheimer’s known as Posterior Cortical Atrophy or PCA. Throughout the production, I worked closely with the organisation Rare Dementia Support (RDS) to learn about the condition and meet potential participants.
It was through this connection that I was introduced to Dr Rimona Weil, a clinician and neuroscientist working with people with dementia with Lewy bodies (DLB). Alongside her clinical work, Dr Weil organises the RDS support group for people living with DLB. As a visual artist, DLB was particularly interesting due to the wide array of visual symptoms experienced by those with the condition. In particular, people’s accounts of visual hallucinations were like nothing I had encountered before and, aside from being unique in almost every sense, were another example of dementia symptoms echoing the language of animation. Together, myself and Rimona were awarded funding by Alzheimer’s Research UK’s (ARUK) Inspire Fund to develop and produce an animated work exploring DLB and visual hallucinations.
Through the Rare Dementia Support events and alongside ARUK and the Lewy Body Society, I was able to meet and connect with a wide network of people living with DLB, many of whom not only had experiences of visual hallucinations, but had a remarkable level of insight into their own experiences.
My first interview, with a daughter and her mother who lived with DLB, was one of the most fascinating conversations that I’ve ever had. It wasn’t simply the range of symptoms that they had experienced, but the way these symptoms blended into and fluctuated with one another that, to hear them, left you unsure as to what was real and what was not. Hallucinations, dreams and delusions, as well as problems with cognitive function, such as remembering sequences in time, made for a very surreal conversation. And yet throughout all of this, the mother remained remarkably lucid, giving objective insight and often making jokes about the strangeness of the whole story.
There followed six more interviews, each unique in terms of symptoms and character. Bringing these stories together into a short narrative was a huge challenge. Although the intention was always to focus the film on the visual symptoms of DLB, the condition is multi-system, encompassing physical and movement difficulties similar to those seen in Parkinson’s disease, as well as a wide array of cognitive symptoms that affect thinking, attention and memory. In addition to this, the variety of visual hallucinations that people recounted were not only broad, but also very detailed and often part of wider stories and events, both real and imagined.
The events organised by RDS allowed me to share my progress with people living with DLB. At different stages of the project, I was able to present audio, artwork and test animations to people with first hand experience of the condition. This meant that people with lived experience of DLB fed-back directly on the tone of the film and influenced the decisions I made throughout.
There were so many angles from which to approach the subject of DLB that I spent a lot of time experimenting with different styles and techniques in order to develop a visual language and narrative approach that reflected both the variety of symptoms as well as the individual characters I spoke with. Right up until the final few months of production the structure of the film felt changeable.
My aim was to allow the most powerful anecdotes as much room to breathe as possible, allowing viewers to share in the depth and detail of people’s Hallucinations. At the same time, I’ve tried to keep the different scenes as varied as possible, to hint at the wide array symptoms that DLB can cause as well as their fluctuating nature.