Celebrating the Life? The Hidden Face of Dementia

How do you remember a loved one with dementia? Do you celebrate their whole life? If you have dementia, how do you want people to remember you?

These are some of the questions our research is trying to understand. This study aims to explore the ways and means of remembrance of people with dementia.

Commonly, relatives and friends may prefer to erase the part of people’s lives touched by dementia, remembering instead only the person as they were in younger life. Yet this suggests we do not value the final phase of life for people with dementia, who constitute a significant proportion of those in older age.  In 2015 there were approximately 850,000 people in the UK living with dementia, two thirds of whom are women. It is estimated that by 2025 this figure will reach 1 million. This research project promotes a dementia-friendly society as well as providing insights into the tensions around identity, which can arise with dementia.

This research cannot be achieved without your help. We would like to hear the stories and experiences of people with dementia, those who care for and love them, and those whose lives are affected by dementia. How have you chosen to remember and celebrate the life of your loved one with dementia? If you have recently been diagnosed with dementia, we would also like to hear about how you would like to be remembered?

The study is part of a wider research project called, ‘Remember Me. The Changing Face of Memorialisation’, led by Emeritus Professor Margaret Holloway  and being carried out by a team from the Universities of Hull, Plymouth and Keele and St Christopher’s Hospice.  The 30-month interdisciplinary project, funded by the Arts and Humanities Research Council (AHRC) with a grant totalling £850,000, is the first systematic attempt to study how, from the earliest times, people have created memorials to those who have died and the new types of mourning and memorialising rituals surrounding death and dying which we see emerging today.

‘Celebrating the Life’ is one of four case studies looking at memorialisation in key areas of contemporary life – among Polish migrants, where death arises from armed combat and the complex questions for transgender persons as well as this study of dementia.

The team is comprised of archaeologists, historians, social scientists, visual arts and photography researchers and a pastoral theologian. The project culminates in a major national conference and public exhibition in April 2018 as part of the Hull  City of Culture legacy programme.

If you would like to take part in the dementia case study ‘Celebrating the Life’, or if you would like to know more, please get in touch with our researchers: Dr Mirka Hukelova or Emeritus Professor Margaret Holloway, tel.01482466376

You can find further information about the project on our website: www.hull.ac.uk/rememberme

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