Relating the daily experience of the 850,000 people in the UK living with dementia is a well-known challenge. To mark Dementia Awareness Week, 14th-20th May, a social photography project based in Liverpool has released a free publication co-created with dementia network service users, revealing the unfamiliar ways that they see the world.

Life Beyond Diagnosis is a newspaper format art project that can be taken apart and freely assembled to create a temporary exhibition, initiated by Open Eye Gallery and Mersey Care NHS Foundation Trust. The publication features images of the SURF Dementia network group, who worked closely with Liverpool-based photographer Tadhg Devlin to co-author and produce the images. 

The work seeks to reflect what it really means for the group to live with dementia and to represent their lives as individuals, not a condition. The publications are currently being distributed as a bespoke publication package, with additional interpretive material, across health centres, GP surgeries, libraries and cultural institutions nationally.

Tadhg Devlin, Photographer, said:

“With rising numbers of people living with dementia in the UK, it’s an essential challenge for the arts to visually convey the way they see the world.

“Each and every person living with dementia has a different way of making sense of their environment, so the first step in representing their unique perspective is taking the time to come to a solid understanding of who they are, what barriers they face, and how they relate to each and every situation they encounter.

“Photography is well-suited to this challenge; it’s becoming more and more relevant to us every single day. The challenge for photographers is ensuring that we work collaboratively with people to relate their stories, rather than just depicting them. The images in Life Beyond Diagnosis are not simply pictures of people living with dementia, but carefully constructed scenes created with each individual, as a vital means of sharing their lived experience and understanding how it relates to others.”

The project forms part of Open Eye Gallery’s Culture Shifts programme, a socially engaged photography project that supports communities to explore their stories in a way that is meaningful to them. Life Beyond Diagnosis is supported by Mersey Care NHS Foundation Trust, in conjunction with the SURF group, a support and advocacy network for those living with early onset dementia.

Dr Sarah Butchard, Clinical Psychologist at Mersey Care NHS Foundation Trust, said:

“For some people [living with dementia] there may be elements of short term memory loss and confusion, but for others the main difficulty may be making sense of the world, understanding language or being able to use language to communicate, using household appliances, planning, organisation, mobility or problem solving.

“Despite these difficulties many people living with dementia remain creative. As dementia affects a person’s social reasoning and they become less concerned with what others might think of them and their creative outputs, they may become more willing to express their ideas in an increasingly creative way. It is hoped that this series of images may help people to appreciate some of the ways dementia can influence a person’s life.”

The photographs in Life Beyond Diagnosis were first premiered at an Open Eye Gallery show in Tate Liverpool’s Tate Exchange space. They will be shown again on 19 May for Liverpool’s citywide LightNight arts festival in Mann Island’s Atrium space. They will also be hosted on PhotoStories, a forthcoming open web platform developed by Open Eye Gallery that acts as an online exhibition space for people to tell the stories of their communities through photographs.

Life Beyond Diagnosis is free to all public institutions. To stock the publication or get involved with the wider Culture Shifts programme, contact liz@openeye.org.uk.

More information can be found here. 

Photo Credit: Tadhg Devlin With SURF group.