Case study D: 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?

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.

In the context of personalising trends in funerals and memorials, as well as personalisation being a central objective of health and social care policy and practice in the UK, the commemoration of and memorialisation of the life and death of a person with dementia is shrouded in silence.

In their study of funerals, Holloway et al observed that celebration of the life was confined to earlier periods of the person’s life, with the dementia alluded to in thanks for care staff or requests for donations to dementia charities. This is at variance with person-centred care and biographical assessment as well as narrative approaches to dementia research which are currently gaining currency. It suggests that the ‘liminal phase’ before death and ‘ambiguous dying’ referred to by commentators as characterising the end of life of older people are being continued into their death and memorialisation.

By focusing on memorialisation in and after the death of a person with dementia, this case study will further illuminate questions of ambiguous identity and the purposes and functions of memorialisation in today’s society. How people with dementia are remembered and their lives celebrated in death offers a significant comment on social attitudes to life with dementia. Following a preliminary survey of data from the PI’s earlier funerals study to uncover instances of dementia and how the death is treated (e.g. in the eulogy) this case study will take the form of 3 sets of qualitative interviews:

  • with a range of celebrants
  • with health and social care professionals supporting people with dementia
  • with relatives of people with dementia who are deceased.

The interviews will variously explore: current practice and experience in preparing for the death of someone with dementia, including any preparation for the funeral; the approach taken to commemorating the death and memorialising the life; challenges, inhibitions and gaps in knowledge and skill of those professionals supporting the person with dementia and their families in preparing for the death and funeral and their aftermath.