TY - JOUR

T1 - ‘Misdiagnosed and Misunderstood’: Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry.

AU - Camic, Paul

AU - Sullivan, Mary Pat

AU - Harding, Emma

AU - Rossi-Harries, Sam

AU - Grillo, Adetola

AU - McKee-Jackson, Roberta

AU - Stott, Joshua

AU - Brotherhood, Emilie

AU - Windle, Gill

AU - Crutch, Sebastian

PY - 2024/2/17

Y1 - 2024/2/17

N2 - This study investigated co-constructed research poetry as a way to understand the livedexperiences of people affected by rarer dementia and as a means to use poetry to convey thoseexperiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementiaand care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets;stakeholders’ verbatim words were analysed with descriptive qualitative analysis. Stakeholderswere 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 learningtool. Poems conveyed a shared narrative of different aspects of lived experience, often owing toatypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuousstruggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-createand respond to the poems, whilst group interviews revealed people’s experiences of the researchpoetry were characterised by reflection on lived experience, curiosity and exploration. Healthcareprofessionals’ responses reinforced poetry’s capacity to stimulate cognitive and affective learningspecific to rare dementia support and prompt both empathy and critical thinking in practice. As thelargest poetry-based study that we are aware of, this novel accessible approach of creating grouppoems yielded substantial information about the experiences and needs of those affected by rarerdementia and how poetry can contribute to healthcare education and training

AB - This study investigated co-constructed research poetry as a way to understand the livedexperiences of people affected by rarer dementia and as a means to use poetry to convey thoseexperiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementiaand care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets;stakeholders’ verbatim words were analysed with descriptive qualitative analysis. Stakeholderswere 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 learningtool. Poems conveyed a shared narrative of different aspects of lived experience, often owing toatypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuousstruggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-createand respond to the poems, whilst group interviews revealed people’s experiences of the researchpoetry were characterised by reflection on lived experience, curiosity and exploration. Healthcareprofessionals’ responses reinforced poetry’s capacity to stimulate cognitive and affective learningspecific to rare dementia support and prompt both empathy and critical thinking in practice. As thelargest poetry-based study that we are aware of, this novel accessible approach of creating grouppoems yielded substantial information about the experiences and needs of those affected by rarerdementia and how poetry can contribute to healthcare education and training

KW - arts and health

KW - care-partners (care-partner and carer are used interchangeably in this paper)

KW - caregivers

KW - carers

KW - healthcare professionals

KW - inherited dementia

KW - non-memory led dementia

KW - qualitative

KW - virtual environments

KW - young onset dementia

U2 - 10.3390/healthcare12040485

DO - 10.3390/healthcare12040485

M3 - Article

VL - 12

JO - Healthcare

JF - Healthcare

SN - 2227-9032

IS - 4

M1 - 485

ER -