Dementia Journeys at Science Gallery London
1st May 2024
Dementia Journeys: Towards Better End of Life Dementia Care, a new exhibition, now open 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.
Tia’s story is featured in Dementia Journeys running until the 22 June.
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. 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.
Dementia and EMBED-Care
Dementia is the most common cause of death in the UK. By 2040 it’s 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 Katherine Sleeman, EMBED-Care’s public and policy engagement lead
Dementia Journeys: Towards Better End of Life Dementia Care will run until 22 June at Science Gallery London