‘There is Something Missing Out There…’: A Performative Portrait Approach to Understanding the Experience of Living with Dementia

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.

Authors

Institutions

Publication Details

Journal
Illness Crisis & Loss
Published
2024-11-21
DOI
https://doi.org/10.1177/10541373241297769
Primary Topic
Grief, Bereavement, and Mental Health
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

‘There is Something Missing Out There…’: A Performative Portrait Approach to Understanding the Experience of Living with Dementia

Tharin Phenwan, Edgar Rodríguez-Dorans
Illness Crisis & Loss
Grief, Bereavement, and Mental Health
article

‘There is Something Missing Out There…’: A Performative Portrait Approach to Understanding the Experience of Living with Dementia

Tharin Phenwan, Edgar Rodríguez-Dorans
article en

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.

Illness Crisis & LossVol. 34(1)
University of Dundee (GB), University of Edinburgh (GB)
Openalex Percentile: Top 70%
Grief, Bereavement, and Mental Health
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.