Abstract
People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.
Highlights
People with advanced dementia often struggle to maintain relationships and can experience isolation and, social death before their physical death (Alzheimer’s Society, 2013)
The purpose of this paper is to examine, through the lenses of embodied and interembodied selfhood, the ways care staff and people with dementia living in a care home relate to each other and how these theories can develop the Senses Framework and promote high quality relationship-centred care with people with dementia until the end-of-life
I came to see how overlooking, or overriding, embodied expressions of autonomy, such as spitting food out, contributed to social death because it did not recognise that people with advanced cognitive impairment continue to have embodied autonomy
Summary
People with advanced dementia often struggle to maintain relationships and can experience isolation and, social death before their physical death (Alzheimer’s Society, 2013). Advanced dementia has been described as the ‘unbecoming’ of self (Fontana & Smith, 1989) and the ‘very splintering of the sedimented layers of being until there is nothing left’ (Davis, 2004, p.375). Adopting this view will mean social death is more likely to happen for people with advanced dementia
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