'Do I see what you see?' A film about dementia, disconnection and seeing the world differently

How do changes in the brain cause us to see differently? Experience the world through the eyes of people living with Posterior Cortical Atrophy (PCA), a rare form of dementia which affects the visual areas of the brain, in this short, animated film directed by Simon Ball and developed in partnership with Alzheimer's Society.  

"It's very hard to describe what somebody sees to somebody else. We might all see this differently, but we would assume we all see it the same. But I can't say "What do you see" because you're going to look at me and say "Well I see what you see" aren't you? It's such an amazing thing"

Do I see what you see? features 6 personal stories and recreates what it feels like to live with the knowledge that your brain might be playing tricks on you and that you are seeing differently from everyone else. Everyday tasks such as making a cup of tea, reading, driving and walking down stairs are beset with obstacles, but their stories also force us to question our own perceptions and whether we are truly seeing the world around us the way others do.

It all started when filmmaker and animator Simon Ball met with Created Out of Mind Director and UCL neuropsychologist Sebastian Crutch. Seb talked about some of the experiences of his patients with PCA and Simon realised he could use his skills to give these unheard voices a platform. He worked with Seb to construct multiple stories, bringing to life these lesser-known experiences of dementia.

 Am I the right way up? One of the uncertainties posed by someone living with PCA that first inspired this film. 

Am I the right way up? One of the uncertainties posed by someone living with PCA that first inspired this film. 

On his inspiration for the film, Simon said: “When I met Seb and he began describing the various symptoms of PCA to me, I felt that the specific experiences described related strongly to my interests in everyday spaces, such as the home or the high street; how when we look at these places differently, they can in a sense become new worlds and offer new experiences. The whole process exposed me to new subjects, such as medical and scientific research, affected individuals and families and of the uncertainty of the brain. It was of great satisfaction to me that all of the participants felt that it helped them and others to understand the condition better".

Sebastian Crutch added: "So much of my inspiration for scientific investigation of less recognised conditions like PCA comes from the kind of insightful reflections on vision that we hear in this film. It was one such uncertainty – ‘Am I the right way up?’ – that sparked our research project on vision and balance problems in PCA, of which this film forms a part. We should never underestimate the capacity of those living with dementia to ask questions and share perceptions of the world that can make anyone stop and think differently”.

Do I see what you see? is narrated by people living with PCA and their partners:

 Valerie Blumenthal, Novelist, lives with PCA and composer of credit music for 'Do I see what you see?'

Valerie Blumenthal, Novelist, lives with PCA and composer of credit music for 'Do I see what you see?'

Valerie Blumenthal is a published author and writer. After noticing problems whilst driving, reading, writing & using the computer, Valerie went to her Opticians knowing that her eyes were functioning perfectly. She was referred to a neurologist and, after many tests, had a brain scan, which revealed significant atrophy of the Posterior Cortical. The relief she felt on being diagnosed was huge. After bluffing her symptoms for years, Valerie could face her condition head on. She finished and published a novel, The Lupo Stick, which took her 8 years to complete! She now runs a choir for a local dementia charity.

Pam and Richard
Born in South Yorkshire, Pam achieved a BA in Physics from Oxford and was successful in her career at a time the IT industry was brand new and almost exclusively male. In 2009, Pam started to experience difficulties driving and, after various eye tests, she had cataract surgery, but this did not help. In June 2014 Pam found herself on the floor of the bathroom one morning. She was initially diagnosed with epilepsy and it was not until July 2015 that the diagnosis of PCA was confirmed. Pam is happiest when she is outside and so, her husband Richard takes her out when he can. They also volunteer with the National Trust as practical countryside volunteers.

 Jon and Lori Hayden

Jon and Lori Hayden

Jon and Lori
“We met nearly 40 years ago in Los Angeles when John came from London to work where l did. He has a degree from Imperial College in London in both physics and philosophy. It's funny John took my hand and opened up my world when we got together and moved to London and now l take his hand and l am his world. I am his full time carer. John was diagnosed in Sept 2014 just after he retired. I retired to care for him. We have lived with PCA dementia for nearly four years and our life especially mine has changed a thousandfold. But l have ensured we have learned, listened and taken part in things beneficial to our journey”. Lori Hayden

Graeme and Trina
Trina worked as Assistant General Secretary for an actor’s charity based in London before she retired. Approaching retirement, Trina became aware of facial recognition problems, and difficulties memorising phone numbers and with reading. In September 2012, she was referred for stroke rehabilitation. This led to the diagnosis of PCA in January 2013. The couple used to enjoy frequent weekend cycling and sailing holidays, both of which are no longer possible, but what has perhaps been the most hurtful for Trina was the loss of ability to read to her grandchildren. Dealing with these limitations has often been difficult and disheartening.

The film also features the voices of Raena Frankel-Pollen, diagnosed aged 63 and her husband Nick Frankel-Pollen and Geoff Moffatt, diagnosed aged 76 and his wife Joan Moffatt. We  are hugely grateful to all of them for sharing their words and experiences. 

This film is dedicated to Gaynor Hulme (1948-2018).

In partnership with Alzheimer’s Society and supported by Wellcome, Created Out of Mind developed this film as part of their work to inform and enrich perceptions and understanding of dementias.

 

"It is really terrific, and I think you are really clever the way you have integrated all the components and captured the very nature of this weird disease”.
"As for the music! I made it up as I went along and it will never be heard again because I can never write the same thing twice. All I know is that Music has saved me. I go to the piano shut my eyes, and compose the first thing that comes into my head." 

Valerie Blumenthal