Electronic versions



  • Paul Camic
    University College London
  • Mary Pat Sullivan
    Nipissing University
  • Emma Harding
  • Sam Rossi-Harries
    University College London
  • Adetola Grillo
    Nipissing University
  • Roberta McKee-Jackson
    University College London
  • Joshua Stott
    University College London
  • Emilie Brotherhood
    University College London
  • Gill Windle
  • Sebastian Crutch
    University College London
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 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


  • arts and health, care-partners (care-partner and carer are used interchangeably in this paper), caregivers, carers, healthcare professionals, inherited dementia, non-memory led dementia, qualitative, virtual environments, young onset dementia
Original languageEnglish
Article number485
Issue number4
Early online date17 Feb 2024
Publication statusPublished - 17 Feb 2024
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