The Dementia Film Project – Dr Stephen Fleming & Dr Jon Huntley

A project aiming to develop a feature film exploring self-awareness in dementia has been funded by the UCL Knowledge Exchange Fund. UCL’s Dr Steve Fleming (Head of Metacognition Team),  Wellcome Centre for Human Neuroimaging and Dr Jonathan Huntley, Division of Psychiatry will partner with Dura Films award winning film makers Will Robinson and Ed Christmas to co-develop a film script with people with Alzheimer’s and those that care for people with Alzheimer’s. The project aims to accurately depict what it is like to live with Alzheimer’s through a series of workshops inviting people to share their stories.

Dementia affects over 50 million people worldwide, with enormous societal and economic costs.  Despite how common the condition is, people with dementia, their loved ones and carers often feel misunderstood and stigmatised. There is an urgent need to hear and understand the lived experience of people with dementia and their carers.

Project lead Dr Steve Fleming said:

“Receiving KEIF funding from UCL is a huge boost to the development of Kronos. Together with film-makers at Dura Films, this will allow us to hold focus groups to co-produce a script exploring the changes in self-awareness experienced by patients with dementia, and how this impacts their relationships with others. Our long-term goal is to create a film that is engaging, moving and gives insight into “what it is like” to live with dementia, informed both by our ongoing research, and by the lived experience of patients and their families.”

Central to this is the crucial question of how awareness of ourselves and the world around us is affected by dementia. This gets to the heart of how dementia affects people and those who love and care for them, and ultimately to what it means to be human. Who are we when our self-awareness begins to fade?

To be able to understand these key questions they will bring together:

–          Leaders in the neuroscience of self-awareness and dementia at UCL

–          Award-winning filmmakers focused on challenging the media misrepresentation of dementia.

–          Leading dementia charities supporting and advancing dementia awareness and healthcare.

–          People with dementia and their carers.

They are also delighted to be partnering with leading charities Alzheimer’s Society (AS), Alzheimer’s Research UK (ARUK), The National Brain Appeal (NBA) and World Health Organization (WHO) to help shape the project and script.

It is their aim to not only challenge stigmas and misconceptions of dementia, but also to use this creative process to shape future research into how self-awareness changes in people with dementia – a currently neglected field of research.

Co-investigator on the project Dr Jonathan Huntley added:

“I am very excited to be part of this project, bringing together researchers, filmmakers, health charities, people with dementia and their carers to develop a film script exploring self-awareness in dementia.  We believe this will provide a deeper understanding of the lived experience of people with dementia, to help us reduce misconceptions surrounding dementia and shape future research.”

Dementia is a global issue, cutting across all cultures and societies. Their partnership with leading charities will enable the film to have global reach to improve compassionate understanding, empathy, reduce stigma and open up space for people with dementia and their carers to be heard and understood.

Awarded Jan 2021