"Everyone Needs a Hug": A Lifeworld-Led Approach to Recognise and Maintain the Person of Care Recipients Living With Advanced Dementia

A most crucial aspect in dementia care is recognising and maintaining the person behind the dementia condition. Yet, it has been found that caring for people living with advanced dementia risk becoming mere techniques and undervaluing the significance of inter-embodied relationships. This can lead to that the unique person of those receiving the care becomes overlooked and undermined. Research suggests how the care recipients’ unique person fruitfully can be recognised via identifying humanising caring relations in their everyday lives. Thus, it is necessary to explore how formal caregivers engage in care that support people living with advanced dementia as human beings, which is the aim of this study. Following Galvin and Todres’ existential lifeworld-led approach to care, the lived experience of formal caregivers’ humanisation of their care recipients were explored through participant observations and semi-structured interviews at two nursing homes specialised in advanced dementia; both methods were granted ethical approval from a research ethics committee. Based on the lifeworld-led theory we found four ways within formal caregivers’ experience to be able to humanise care recipients living with advanced dementia, which can be described as: The continuity of self, The touch of the world, The kindred understanding, and The invisible bond. We argue that it is not enough just replicating such caring ways in order to deliver humanisation in advanced dementia care, but require of the caregiver to engage in a genuine human relation with those for whom they care. Such engagement in recognising and supporting the intrinsic humanness of the care recipient can guide a more humanly sensitive care practice that recognises and maintains the unique person behind the advanced dementia condition.