Life Beyond Diagnosis is a collaborative project between myself and theMerseyside based SURF (Service User Reference Forum) Dementia network group. In 2016, a number of the group worked closely with myself to co-author a series of photo stories, which break the stigma associated with dementia and reflect their lives as individuals, not as a condition. 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.
The project wassupported and in partnership with Open Eye Gallery and Mersey Care NHSFoundation Trust
"My name is Gina, short for Reggina and I am 63 years old. I discovered heavy metal after going to a nightclub with a friend and became a huge fan of heavy metal, particularly Metallica. I first started getting interested in music when I was 11 years of age when the Beatles were popular. I was a member of a church youth club and there were a few older people at the club who used to bring along records and that’s when I first heard the Beatles. And I fell in love and I absolutely adore the Beatles,especially John Lennon. And still do, that’s something that hasn’t changed. I still admire him now and all the principles that he had. I try in my own way to maintain those principles and especially in the aspect of peace. John Lennon is the main reason I went on to become a member of theCampaign for Nuclear Disarmament, became the chair of Liverpool CND group and branched out into lots of ethical pastimes that I have. I always go to the Hiroshima day service and the Nagasaki day service and I make paper cranes for them. So if I forget, cos it’s easy for me to forget now, I can always put some cranes together and take them down to the service. "
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.
Whilst most people recognise that dementia is associated with changes in memory, less people are aware that it can have an effect on other areas of functioning too. This series of images aims to highlight some of these difficulties. For some people dementia can have an impact on perception, how we see and make sense of the world. 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.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."
"I can't remember as I was highly confused and in a highly emotive state a the time. I was virtually falling off my feet, I was in a lot of physical pain. When I showed them my Alzheimers card it made a big difference."
Another time Roy was unable to work out how to eat his soup so in desperation, and due to the absence of a more appropriate plan, he poured it onto the floor.