Author: Julie Simpson
Simpson, Julie, 2024 “I still, I still, I still, I still…” The Voice of the Older Person with advanced dementia in residential aged care: an ethnography exploring. What it means for the Person to have their Voice., Flinders University, College of Nursing and Health Sciences
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The voice of the person with advanced dementia is a significant aspect of how each person lives their daily life in residential aged care. This doctoral thesis explores how the person continues to express and /or enact their voice in this stage of their life. These features become the person’s pathway to expressing their continuing presence and participation in the world.
The survey of the various contexts in which people with advanced dementia live discerned that they are often stigmatised, stereotyped, and described as deficit and unable to communicate. An integrative literature review found a dearth of research literature exploring how the person with advanced dementia expresses or enacts their voice from their perspective and lived experience. This thesis contrasts with previous studies in positioning people with advanced dementia as central participants and contributors, and with respect to their continuing capabilities and capacities to communicate. My original contribution to knowledge is the development of an understanding of the voice of the person with advanced dementia, how and why the person with advanced dementia expresses and enacts their voice in their lived experience, and the significance this has for them.
A theology and ethics of developing relationships of respect, recognition and reciprocity with people with advanced dementia underpins this thesis. A qualitative methodology of ethnography has embraced strength-based principles and an appreciative inquiry approach. The research was undertaken in two aged care homes in the same South Australian organisation, with twelve people becoming central participants. This study utilised various methods, including conversations, interactions and participant observation to facilitate their voices and contribution. Family and staff members in diverse roles were interviewed about how they promote the person’s voice. The research findings evidence that the person continues to have their voice, and clarify the significance this has for them. A range of themes focus on their voice being an aspect of their social, emotional and spiritual dimension. These themes include: the significance of relationships to the person; the person’s voice repertoire; the person’s voice in interactions and activities; the person’s voice in their continuing agency, identity and storied-life; the person’s voice in reciprocity and contribution; the person’s voice expressing their emotionality; the person’s voice making important connections; and the person’s sense of meaning and spiritual significance in engaging with another alongside them.
Acknowledgement of and attentiveness to the person’s voice is the crucial segue into providing appropriate, accurate, holistic, and excellent care. Integrating this approach in care enables the person to continue to live a fulfilling and flourishing life. The findings of this thesis contribute to the ongoing development of care policy and praxis that recognises, strengthens and promotes the voice of the person with advanced dementia living in residential aged care and in wider society.
Keywords: advanced dementia, voice, personhood, relationship, capabilities, communication, interaction, residential aged care
Subject: Ageing Studies thesis
Thesis type: Doctor of Philosophy
Completed: 2024
School: College of Nursing and Health Sciences
Supervisor: Associate Professor Ruth Walker