Dementia Journeys: Towards Better End of Life Dementia Care

A powerful and thought provoking new exhibition at Science Gallery London
Dementia Journeys: Towards Better End of Life Dementia Care picture

Dementia Journeys: Towards Better End of Life Dementia Care, a new exhibition at Science Gallery London, powerfully presents the stories of people who have cared for loved ones dying with dementia, alongside Empowering Better End of-Life Dementia Care (EMBED-Care) research findings, to highlight the ways in which palliative care for people with dementia could – and should - be improved.

Through portraits, cartoons and poetry, Dementia Journeys paints a picture of the experiences of three women – Tia, Fran and Keiko. Tia cared for her Nan, Cherry, until the end of her life, Fran cared for both of her parents, Bob and Pat, who were diagnosed around the same time and died fourteen months apart, and Keiko continues to care for Javed, her husband of 46 years, who remains mobile but is no longer able to speak or smile.

By bringing these women’s lived experiences together with research insights and artistic interventions, Dementia Journeys highlights the complexity of needs experienced by people with dementia, and the significant and difficult role carers play to ensure comfort and dignity for people dying with dementia. The exhibition will also invite visitors to consider their own wishes and priorities regarding end-of life care and our collective hopes for people living and dying with dementia.

The concept for Dementia Journeys emerged from Empowering Better End of-Life Dementia Care (EMBED-Care) – a 6-year research programme, the largest funded of its kind, jointly led by Professor Liz Sampson at University College London and Professor Catherine Evans at the Cicely Saunders Institute at King’s College London. It has brought together clinicians, researchers, policy makers, patients, and families to catalyse a step-change in palliative care for people with dementia. The aim of Dementia Journeys is to spark public discussions around dying with dementia, and engage millions of people in the conversation, by combining art, science and lived experience.

Artistic Collaborations

Former Creative Director of the ground-breaking and international award-winning SICK! Festival, and Founding Creative Director of We Live Here, Tim Harrison, has curated Dementia Journeys, working with King's College London Professor Katherine Sleeman (EMBED-Care’s public and policy engagement lead), photographer Allie Crewe, graphic novelist Ian Williams, poet Lousie Wallwein and the team at King’s Culture, the university’s knowledge exchange institute for creative and cultural engagement.
Twice British Journal of Photography Portrait of Britain award-winner Allie Crewe, who is currently caring for a parent experiencing dementia, met with each participant to discuss their experiences and produce stunning portrait photography, revealing the person behind the label of ‘carer.’

Graphic Novelist and Doctor Ian Williams worked alongside participants to sketch their stories into large-scale cartoon strips for display within the exhibition. Each cartoon reveals more about the people they cared and care for, the impact dementia has had upon their way of life and their reflections on care provision and grief.

Poet, playwright, and performer Louise Wallwein delivered a poetry workshop with five carers of people with dementia, including Tia, Fran, and Keiko, to co-create a manifesto for end-of-life dementia care. The lines of poetry that form the manifesto run throughout the exhibition, alongside the EMBED-Care research outcomes.
In the final room of the exhibition, visitors to Dementia Journeys will be able to play a card game to explore their wishes and priorities around end-of-life care and will be invited to join a conversation about end-of-life care.

Dementia and EMBED-Care
Dementia is the most common cause of death in the UK. By 2040 it is estimated that annually 220,000 people will die with dementia, with many experiencing distressing symptoms like pain and agitation. Access to good care for people with dementia towards end of life is highly unequal.

Professor Katherine Sleeman, EMBED-Care’s public and policy engagement lead said; ‘Both death and dementia are taboo subjects in our society. And yet, dementia is the leading cause of death, and the number of people dying with dementia is anticipated to increase several times over the next decades.
Palliative care can improve physical comfort as well as psychological, spiritual, and social concerns for people with dementia. But only half of the public know that palliative care is relevant for people with dementia.

This exhibition shines a light on caring for someone with dementia near the end of life. Shown through the eyes of three inspirational – but ordinary – women, we want our exhibition to spark conversations about the importance of good care towards the end of life and generate a groundswell of public support for improving dementia care.’

Professor Liz Sampson, EMBED-Care’s principal investigator said; ‘Many of us will experience dementia, either in close relatives, friends, or even ourselves one day. For the last 6 years we have been researching new ways to improve care for people with dementia as this progresses.

We hope this exhibition illuminates how families and friends provide most of this care, the reality, the challenges, but also some of the more affirmative experiences they have had. This is an emotive topic, but we have collaborated with carers, people with dementia and artists to bring this important issue to life.’

Dementia Journeys: Towards Better End of Life Dementia Care
Free, Wed-Sat. Until 22 June 2024
Science Gallery London, Great Maze Pond, London, SE1 9GU.
Closest Tube, London Bridge.
Exhibition Link

Published Apr 11, 2024