Preprint Article Version 1 Preserved in Portico This version is not peer-reviewed

‘Misdiagnosed and Misunderstood’: Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry

Paul M Camic
* ORCID logo ,
Mary Pat Sullivan
ORCID logo ,
Emma Harding
ORCID logo ,
Martha Gould
,
Lawrence Wilson
,
Sam Rossi-Harries
ORCID logo ,
Adetola Grillio
ORCID logo ,
Roberta McKee-Jackson
ORCID logo ,
Susan M Cox
ORCID logo ,
Joshua Stott
ORCID logo ,
Emilie V Brotherhood
ORCID logo ,
Gill Windle
ORCID logo ,
Sebastian J Crutch
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Version 1 : Received: 20 November 2023 / Approved: 20 November 2023 / Online: 20 November 2023 (16:45:26 CET)

A peer-reviewed article of this Preprint also exists.

Camic, P.M.; Sullivan, M.P.; Harding, E.; Gould, M.; Wilson, L.; Rossi-Harries, S.; Grillo, A.; McKee-Jackson, R.; Cox, S.M.; Stott, J.; Brotherhood, E.V.; Windle, G.; Crutch, S.J. ‘Misdiagnosed and Misunderstood’: Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry. Healthcare 2024, 12, 485. Camic, P.M.; Sullivan, M.P.; Harding, E.; Gould, M.; Wilson, L.; Rossi-Harries, S.; Grillo, A.; McKee-Jackson, R.; Cox, S.M.; Stott, J.; Brotherhood, E.V.; Windle, G.; Crutch, S.J. ‘Misdiagnosed and Misunderstood’: Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry. Healthcare 2024, 12, 485.

Abstract

This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed-methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders’ verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation. Healthcare professionals (n = 93) were surveyed to elicit their responses to learning through poetry and its acceptability as a learning tool. Poems conveyed a shared narrative of different aspects of lived experience, often owing to atypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuous struggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-create and respond to the poems, whilst group interviews revealed people’s experiences of the research poetry were characterised by reflection on lived experience, curiosity and exploration. Healthcare professionals’ responses reinforced the poetry’s capacity to stimulate cognitive and affective learning specific to rare dementia support and prompt both empathy and critical thinking in practice. As the largest poetry-based study that we are aware of, this novel accessible approach of creating group poems yielded substantial information about the experiences and needs of those affected by rarer dementia and how poetry can contribute to healthcare education and training.

Keywords

non-memory led dementia; young onset dementia; inherited dementia; care-partners; carers; caregivers; healthcare professionals; healthcare students; virtual environments; qualitative; arts and health

Subject

Public Health and Healthcare, Public Health and Health Services

Copyright: This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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