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“Do I see what you see?”: A film about dementia and seeing the world differently

Experience the world through the eyes of people living PCA. A short animated film produced by Simon Ball.
I suddenly didn’t know where to position my eyes in relation to the road. It was raining and the light was going straight into your face. And you just don’t see it properly. I zig-zagged all the way, leaving tyre marks. Going over the pavement, hitting bollards or whatever. I just thought, “What’s going on?” What if there’d been someone standing there instead of that bollard?
I didn’t know there was anything wrong. I didn’t know there was anything wrong.
Dementia? Why would you think was dementia?
It’s so fiendishly complicated. There’s how many million neurons involved in visual processing? When certain neurons stop functioning as well as they would have done, virtually any combination of bits of your visual processing might go.
So the eyes are seeing it, but the brain is not recording it in a little slot back here. It’s an image that your brain’s made up from what your eyes have captured. And so if it makes it up wrong, it’s then persistent, which is not always true of with people with normal Alzheimer’s.
An ordinary eye test won’t necessarily show much because if you’re looking at A, B, D, E, F, that’s not a problem. But if you’re trying to read a line– I get the first word and when I glance at the second word, the first word’s gone. Some from this sentence and some from this sentence. And then coming back up to this sentence. Blobs on a piece of paper. Everything does dance around, all the letters. And eventually, just becomes one big blur. I’ve read extensively all my life and I can barely read. I’m writing. Crowded page. It is, it’s moving. It’s mutating. It’s… Everything is moving. C, C, C, C, H, U, R, C, C, C, C, H. F’s instead of fives.
B’s instead of P’s. P’s instead of B’s. There’s a number of funny little things in my brain. And sometimes some do things and sometimes others do things.
It’s very frustrating to go to get something and it’s not there, but it’s there.
I can often see things faster if they’re moving. And so if a bird flies across his vision, he’s got it. He knows what that bird is. He can see exactly as it was before, because somehow it’s tracked his eye to it. The glare when you’re walking along is very, very bright. And there’s shadows and reflections of glistening puddles. Is it real? Is it solid ground? Is it something you’re going to go down? Going down stairs, I can’t see my feet. I always feel for the first step so I can gauge the rhythm of the stairs.
You do not know where to put your feet, so you get vertigo. It gives you vertigo. Well it’s like standing on the edge of something that you could just jump.
I can play all the notes, but not necessarily in the right order. I can make a cup of tea, but if Graham talks to me in the middle of that, I will forget at what stage I was at. Yeah, first of all, I’ve got to find the cup. It’s almost as though he must be able to see it. I can see it, but I can’t see where it is. I still couldn’t see it. I said, “Where?” “There.” “Where?” “There!” There’s a real one and there’s an image. I can’t distinguish between them. You have to sort of dismiss the whole image somehow and then get it to reassemble the whole thing, and then kettle won’t be there again.
Like, your reading glasses are in the midst of a load of other things. You can’t spot them very easily. The whole thing, you do see it rather like a Brueghel painting…. sort of crowded… surreal. My fingers were like bananas. I can’t use the phone properly. You can remember the code for your cash point, but you couldn’t work the machine to put them in the right order. Oh, yeah, I can see the computer. And something will come up on the screen. But if I press the wrong key, then I’m stuck. And I can’t find my way around the keyboard. I mean, I’m fumbling for letters. Just pressing more buttons and getting deeper and deeper and deeper into a mess.
And he doesn’t know it.
I have not, in five or six years now, had a clear explanation. And I don’t think we’re giving you one now. What is it that you actually see? I can see… but I can’t see. 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”. Don’t you? You’re going to say, “Well, I see that.” It’s such an amazing thing.

How do changes in the brain cause us to see differently?

Experience the world through the eyes of people living with a rare form of dementia that affects how they process objects and tasks around them in this short animated film, directed by Simon Ball.

How does watching this film make you feel? If you or somebody that you know has a diagnosis of posterior cortical atrophy (PCA), do you have any other examples of ways in which visual perceptions has been affected? Share your reflections and examples in the Comments area.

Created Out of Mind Short Film Festival 2018

If you’re interested in finding out more about films that are exploring diverse and unexpected stories of dementias, click here.
Film created and directed by Simon Ball. Funded by Created Out of Mind and Alzheimer’s Society, supported by Wellcome. Music by Valerie Blumenthal. Sound Design by Zai Tang.
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Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives

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