Remembering and Memorialising the Person With Dementia: One Life or Two?

Abstract

This article reports the findings of a study into how people who lived and died with dementia are remembered and memorialised. The case study – ‘Celebrating the Life? The hidden face of dementia’ – comprised one strand of a 10-strand interdisciplinary study, funded by the UK Arts and Humanities Research Council, which investigated memorialisation practices across time and place and in different socio-cultural contexts. It was hypothesised that exploring memorialisation and dementia might illuminate one of the key tensions of contemporary memorialisation, that of ambivalence and ambiguity. This article focuses on data collected in phase 1 from in-depth interviews with persons bereaved of a relative who had lived and died with dementia. Two categories of remembering are discussed and linked to the relative’s outlook on dementia: (i) Remembering the person before dementia (ii) Remembering the whole life. Problematic memories which lead to a degree of ambivalence and ambiguity are also identified. The ongoing process of memorialisation emerges as a healing process; being able to remember and celebrate the whole life, with dementia as the final part of the person’s journey, emerges as key to this process. It is suggested that the laying down of a repository of positive memories during the period with dementia is therapeutic both for subsequent grieving and for the relationship during the life and that this is an area in which care workers from health and social care services can make a significant contribution.