Whilst most people recognise that dementia is associated with changes in memory, less people are aware that it can have a significant effect on other areas of functioning too. This series of images aims to highlight some of these difficulties. Some of these images may look strange to you and it may take you some time to work out what you are looking at – this is the day to day reality for many people living with dementia.

We may think that looking at an object and knowing what it is used for comes naturally but in reality it involves a complex series of steps. First we must be able to see the object against its background (and if colours are too similar sometimes we can’t), then we must know what the object is, we must also know what the object is for. If any one of these steps go wrong it can lead to difficulties. Here Roy is recounting a time when he was unable to work out how to eat his soup so in desperation, and the absence of a more appropriate plan, he poured it onto the floor. "When the starter was presented in front of me and I didn’t know what to pick up. You could feel eyes on you. I can only think I was psychologically trying to remove the problem. Perhaps. That’s an example of coping with dementia. It’s frustrating because you’re trying to live a normal life and it isn’t normal anymore. It’s problematic."

"Some days I feel as if I’m covered in cobwebs, which is a horrible thing. So if you see me wiping my face that’s what it is. The thing I hate most is the cobwebs on me and sometimes you wonder if you are dead because when people talk about you in the past tense when you’re in the room. You wonder if you’re back from the dead listening in when you’re wiping the cobwebs off you."

Finding our way through the world is something we all do every day but living with dementia can pose challenges for this. Places change and they may not look the way we expect them to look, this can lead to confusion and getting lost. Add to this perceptual difficulties such as steps looking like slopes and shadows looking like holes and the person can end up feeling very alone and frightened in the world. Gina recalls times when she has felt distant and detached from other people even when there are lots of people around.

For some people dementia can have an impact on perception, how we see and make sense of the world. Roy experienced difficulties with the police once when he became confused and disorientated when out for a walk. He described how frightening it was, although he acknowledged how supportive the police were once they understood that he had dementia.

"It was terrifying. It was like being switched off, nothing seemed to mean anything in that period of time." A few years ago Roy became disorientated when out for a walk and was approached by the police because of his inappropriate behaviour.

"When I showed them my Alzheimer's card it made a big difference."

"A lot of people think that dementia happens to everyone when they get old but it doesn’t. It’s not a natural part of aging, losing your memory a bit is. We’ll all lose a bit of our memory but that doesn’t mean you’ll get dementia. You’re given a diagnosis of dementia in one hand and a superpower in the other hand. So you put the diagnosis in your pocket and you’ve got this superpower. So when you go into a room and it’s full of people and someone introduces you, they go ‘this is Tommy he’s got dementia’ and then your superpower kicks in, because you become invisible. They start talking about you, over you, around you but they never speak to you. People don’t know how to talk to people with dementia because they’ve always been told people with dementia can’t talk, they can’t understand you. I did a talk to third year medical students the other day and in the three years they’d never had anything about dementia. When I spoke to them they said that they never realised it was about perception and spatial awareness. They just thought it was about memory. So if third years medical students don’t know about, what chance does the ordinary member of the public. It’s only about going out and educating you.

The biggest thing that you fear is that you’re not able to contribute to society again. I think everyone needs to feel as if they can contribute to society in a meaningful way, not just be a burden on it. And when I do talks about dementia, I feel as if I’m helping my peers. If I help my peers, I help their carers, if I help the carers it takes the stress off them. If it takes the stress off them, it takes it away from the NHS having to treat those people with dementia. We have got to go out and give messages of hope and the only way we can do that is by talking positively about having dementia." Tommy discusses some of the reactions when people are diagnosed with dementia.

Dementia can affect our visuospatial skills such as our depth perception. Tommy is demonstrating that patterned floors can be very disconcerting to those living with dementia and a checked floor such as the one shown here can look like steps to a person making it hard for them to navigate their way across it. "It’s as if you’re in a hall of mirrors and nothing seems real. I always think the people with dementia live in the mirror because if you put your left arm up, the person in the mirror puts their right arm up. You think it’s the same but it’s not. So everything we see is completely different.

It’s just like being in a foreign country. You don’t understand the language people are saying, you know people are talking to you but it’s just not making any sense."

Paul talked about his struggles with his diagnosis of dementia : "I shrugged it off, thinking it was a senior moment but little things like that were happening on a regular basis. That’s when I went to the doctors and the culmination of the diagnosis two years ago of early onset Alzheimer's. So I just went to the pub for two weeks as I was in denial. The first two weeks I was just in the pub, drunk day and night as I couldn’t…...……………....eh………………………..like a lot of people with Alzheimer's, you think “No, not me, the doctor’s wrong!” and I actually told the consultant that he was wrong and he told me that he hadn’t been wrong in 24 years. At that point I was referred to Mossley Hill hospital, they phoned me up every day but I never answered the phone. I wasn’t interested in going anywhere. Feeling so sorry for myself. After a few weeks one of my good pals said “Look you’re killing yourself here. There’s something wrong here and you need to go to the doctors or do something” and it was at that point I went back to Mossley Hill and I went to a post diagnostic group and it was the best thing that ever happened to me because you realise, by and large, that it’s not the end of the world. I realised I was still relatively young, and I’m still the same guy. They taught me how to understand things and how to be the same person. We had a lot of help and lot of people in the UK don’t get any help. In a lot of areas you are just left by yourself but in Liverpool we have a substantial area for people with dementia.
I have mostly good days. But. When the black days come it gets hard for a couple of hours and you get a little bit frightened of what’s going on when you enter this other world. But sooner or later you come out of it and you pick yourself up and brush yourself down and start again. And don’t ever give in, that’s the key to it all. Don’t ever give in."

In this image Tommy who is living with dementia and his friend Bobby play golf at Woolton golf club in Liverpool. “Golf has always been in my family. My dad was a scratch golfer and his dad was a golfer. It’s a good form of exercise and it gets you out of the house. And if you sit in the house, you brood and dementia likes you to be alone so it can work on you. It niggles away at different parts. Dementia doesn’t like it when you’re out and about with people cos it’s not working on you then.”

Finding our way through the world is something we all do every day but living with dementia can pose challenges for this. Places change and they may not look the way we expect them to look, this can lead to confusion and getting lost. Add to this perceptual difficulties such as steps looking like slopes and shadows looking like holes and the person can end up feeling very alone and frightened in the world. Gina recalls times when she has felt distant and detached from other people even when there are lots of people around.

Confusion and misunderstandings can lead to people with dementia behaving in ways that other people might find unusual and difficult to understand. Paul recounts posting a large sum of money into a post box rather than putting it in the bank. "I actually went to pay the insurance bill one day, I had letters in my left hand and about £4, 000 in my right hand and I posted the £4, 000 in the post box. All hell broke loose when I went back to the office."

Paul wanted the images to capture the ways he copes with the challenges of dementia. He described the importance of nature and of having space to express himself. "I always walk up to Speke Hall and I go by the lake. It’s like a little mantra I have as I always stop and I always have a little shout. I make sure no one is looking at me first and then I say ‘Go on then, throw me in’ then I start shouting at the top of my head and I reply ‘You can’t, can you? Cos I’ve won, haven’t I?’ and I feel great after I’ve done that. That’s my day, I’m OK. It’s just a little thing that I do and it makes me feel so good.
I have my own battle. And I win every day."