'I see you': exploring the stories of people without dementia who have meaningful connections with people with advanced dementia
Dominant narratives in a hypercognitive Western society invite others to see people with advanced dementia as those whose human identity is disappearing and fading away. Dementia is often presented in catastrophic and terrifying terms and people with advanced dementia may be positioned as a “non-person” (Lesser, 2006, p58) and as “already in the house of the dead” (Post, 1995, p136). This leads to a perception that people with advanced dementia cannot be known or understood as they are no longer seen as an “active agent within their relationships” (Watson, 2016, p0). People with advanced dementia may begin to feel invisible in a world that seems to value independence, memory, clarity of mind and the economic productivity of a person. Additionally, people with advanced dementia are often positioned as a burden on their families and on society, and as Mary Warnock said that they are “wasting people’s lives…and wasting the resources of the National Health Service” (Beckford, 2008, para.10). Narratives like this are not only inaccurate but are dangerous for people with advanced dementia. They dehumanise the person with advanced dementia. This can lead to marginalisation, isolation and poor care. It may even influence the way in which people think about how dementia should be treated, “including medically assisted death” (Johnstone, 2011, p390). People with dementia can be perceived as no longer belonging to society and feel “unworthy of being treated as a human being” (Sabat, 2008, p83). The main aim of this doctoral research is to explore stories that counter the dominant dehumanising narratives and instead position people with advanced dementia as fully human persons. This PhD research takes an interdisciplinary approach that has blended sociological and theological concepts. It has applied these to the findings of an empirical study that explores the experience of making meaningful connections with people with advanced dementia. The research employed a narrative methodology drawing on the work of Arthur Frank’s (2010) Socio-Narratology. Seventeen narrative interviews were carried out with a range of people without dementia that had experienced meaningful connections with people with advanced dementia. The interviews explored the experience of meaningful connections with people with advanced dementia. Participants included family members of people with advanced dementia, care staff who worked in residential care homes for people with advanced dementia, spiritual carers who supported people with advanced dementia, and Elderflowers who are professional arts practitioners who work with people with advanced dementia using clowning techniques. Findings were discussed within a Christian theological framework of hospitality (Swinton, 2012, Sutherland, 2006) and drew on the writing of Professor of Old Age Psychiatry Julian Hughes’ (2014a) aesthetic approach to people with dementia. The stories revealed in this research and discussed within the above framework trouble and challenge the damaging and dehumanising narratives that position people with advanced dementia as a non-person and burden. The stories in this research provide a counter story that calls others see people with advanced dementia as fully emotional, physical and spiritual human persons who are valued; loved; known; belong and continue to be aware of and experience the world.