‘There is something missing out there…': A performative portrait approach to understanding the experience of living with dementia

Tharin Phenwan (Lead / Corresponding author), Edgar Rodriguez-Dorans

Research output: Contribution to journalArticlepeer-review

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Abstract

People with dementia (PwD) often face symptoms that influence their memories and capabilities to express themselves meaningfully. These symptoms make it particularly challenging for qualitative researchers to capture and demonstrate PwD's complex experiences with the traditional reliance on textual outputs. This paper offers a novel approach through performative portraiture to demonstrate and argue that the use of this approach is needed as an alternative academic output that diverges from textual reliance. The paper begins with an overview of the research, which aimed to improve understanding of the initiation and revision process of advance care planning with and for PwD and was used as a baseline to create ‘Dave’ as a young PwD based on the verbatim interview transcripts of 13 PwD. The methodological process is outlined, and findings are then chronologically discussed. The paper concludes with the strengths and limitations of this approach as well as its future implications.
Original languageEnglish
Number of pages17
JournalIllness, Crisis & Loss
Early online date21 Nov 2024
DOIs
Publication statusE-pub ahead of print - 21 Nov 2024

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