Challenging the discourses of loss: A continuing sense of self within the lived experience of dementia

Research output: ThesisDoctoral Thesis

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Abstract

My published work forms a portfolio of autobiographic narratives, exploring the lived experience of dementia. In my integrating essay, I use autoethnographic enquiry to reflect on a key theme in my work, that of challenging the concept of loss of self in dementia.
Written from a Christian standpoint, the integrating essay, like my body of work as a whole, aims to encourage the faith community to see people with dementia differently. I propose three aspects of a continuing sense of self within the lived experience of dementia, namely:
Embodied self: my sense of being embodied as an “I” with first-person feelings about the world around me, distinguishing self from non-self;
Relational self: my sense of being an embodied self in relationships with God and with others; and
Narrative self: my sense of being able to find meaning in life and develop a sense of narrative identity in the present moment.
I conclude that as an embodied relational self, I can find a meaningful narrative in the present moment.
As a response by the faith community, I propose a concept of ”We-Thou” communion, in which we can all come before God as a community, rather than as individuals. In this communion, we are all gathered up as equals, as “We” before the “Thou” of God, and what is important is who we are, not what we do. This is the good news of the Gospel for those of us living with dementia. I conclude that enfolded within this “We-Thou” communion, I am who I am before God, held in grace to the Father, through the Son, and by the Holy Spirit. The Body of Christ remembers for me, and re-members me.
I have developed the pastoral consequences of my argument as a Letter to the Church (Appendix), proposing love drives out fear of dementia, and hospitality with delight provides a welcome for people with dementia where we feel that we belong. We need relationships overcoming our communication problems, and the faith community to be alongside us in our present moment, carrying our story, and challenging the discourses of loss. We seek pastoral care and ministry assisting us to find meaning and nourish our spirit.
Original languageEnglish
QualificationDoctor of Philosophy
Awarding Institution
  • Charles Sturt University
Supervisors/Advisors
  • Foulcher, Jane, Principal Supervisor
  • MacKinlay, Elizabeth, Principal Supervisor
  • Stevens, Bruce, Advisor
Award date08 Sep 2017
Publisher
Publication statusPublished - 2017

Grant Number

  • PaCT Scholarship 24/02/2016

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