Try to look again: a phenomenological study of recognising humanness in people living with advanced dementia

Objective and aim: Although maintaining personhood is well-acknowledged as fundamental in providing high quality dementia care, recognition of personhood in advanced dementia keeps challenging formal caregivers. However, research suggests that personhood in advanced dementia may be evident through expressions of humanness in everyday life. Thus, this study aims to explore how personhood in advanced dementia can be recognised as their expressions as existential human beings.

Method and research design: Following Galvin and Todres’ lifeworld-led approach to care, personhood in advanced dementia was explored through the lived experiences of nursing home residents living with the condition. Participant observations with people living with advanced dementia were conducted at two nursing homes as well as semi-structured interviews with the care staff.

Ethical considerations: Process consent was used to assess residents’ willingness to participate, and ethical approval was sought and granted by a research ethics committee.

Results: Based on a phenomenological analytic method by van Manen we found expressions of humanness in advanced dementia can be very ambiguous. Our findings can be summarised in four themes conveyed as anecdotes describing how people living with advanced dementia enact their historic agency, seek a sense of embodied homeliness, form and nurture candid relationships, or try to understand the situated presence. Embodied engagement in understanding the lived experiences of care recipients’ ambiguous expressed humanness can assist formal caregivers to really see or feel those they care for as existential human beings.

Conclusion: Approaching behaviours and utterances in advanced dementia as ways of expressing one’s humanness can support formal caregivers’ recognition of the personhood of their care recipients. And when such expression becomes incomprehensible, we must try to look again and find the human meaning in them.