Relinquishing Personhood in Dementia: Discordant Discourses – a Nurse’s Inquiry

Abstract

This thesis traces the journey of my inquiry into family members' experience of the relinquishment of the personhood of a loved one with a dementia; a journey in which my own prior understandings were significantly challenged. The study was prompted by my experience of working in the area of dementia care and hearing, in the course of the working day, comments such as 'there's nobody there' made in relation to someone suffering from severe dementia. Such comments appear to imply that the person of the dementia sufferer in some way is no longer present. They are comments which relate to the very nature of personhood. The study takes impetus from the fact that the ways in which nurses view the personhood of dementia sufferers has significant consequences for the ways in which they respond to dementia sufferers and their families. This thesis, which retells the stories of four family members who each have a loved one with a dementia illness, reveals that rather than there being a unified concept of personhood in dementia, and in spite of the fact that particular understandings of dementia and personhood dominate our cultural conversations, in their day to day lives these four family members managed and made sense of their experience through particular and different ways of looking at the impact dementia has on the personhood of dementia sufferers. Not all did, in fact, relinquish the personhood of their family member. In their lived lives, the four research participants had recourse, each in different ways, to multiple discourses of personhood. For some, in addition to loss, there was also unexpected gain. This finding necessitated and shaped further inquiry into discourse and the role of discourse in shaping, constraining and opening up possibilities for meaning, and into the two substantive areas of dementia and personhood. Nurses work closely alongside the family of dementia sufferers who are daily faced with the challenge of managing and making meaning of that situation. It is critically important that they are able to recognize, validate and support the variety of needs that family members have. Nurses, whose education is traditionally based on a biomedical framework, are nevertheless often required to mediate between different understandings. Not only do they need currency of knowledge in the rapidly changing biomedical field of dementia, but they need also an understanding of the role and the power of discursive constructions of both dementia and personhood. Such understanding will provide insight into alternate ways of understanding these concepts. However, although such understanding is critical for nurses working in this area, nursing literature has not brought these discussions to the fore. This thesis makes an important contribution to this area of knowledge in exposing and investigating the discourses of personhood in dementia. It will be relevant to both nursing practice and education.