'A Torch, a rope, a belly laugh’: Engaging with the multiple voices of support groups for people living with rare dementia

Abstract

Background It is estimated that rare forms of dementia account for about 7% of all dementias and 10–20% of dementias for those under the age of 65. These conditions bring unique difficulties related to age of onset, impact on family commitments, employment and finances, and also bring distinctive needs for support and care in contrast to Alzheimer’s disease and vascular dementia, the two leading causes of dementia. The aim of the present study was to explore and better understand what the concept of support means for people living with different rare dementia (PLwRD) and their care-partners who attend ongoing support groups. Method Using research poetry, an arts-based health research methodology, this mixed-methods study solicited words (source material) from 177 PLwRD and care-partners at eight in-person support groups. Poems were co-created by participants representing seven types of rare dementia and a facilitating poet. The source material and completed poems were analysed through a three-step process involving linguistic analysis followed by structured-tabular thematic analysis, relational analysis, and concluded with an online survey about participation in the study. Results The results of the linguistic analysis found that co-constructed poems remained faithful to the original source material provided by PLwRD and care-partners. These results provided confidence to subsequently conduct a thematic analysis of eight completed poems, which identified 15 initial themes among seven rare dementia types and one mixed-rare dementia group. A further relational analysis between themes drew on 6 different relational forms (comparative, semiotic, evocative, contingency, reciprocal, conceptual part-whole) and identified an overarching theme ‘A Community, Not an Intervention’ that describes the process of support (Dynamic Sharing, Strategies and Information, Part of a Community, Connecting with Peers, Professional Input, Transcendence, Effectual Actions) for this population. Survey results revealed a varied but generally positive response to writing whilst reactions to reading and listening to the completed poems reflected strong emotional connections that resonated with personal experience. The poems were also seen as a vehicle to communicate with healthcare professionals and the general public about rare dementia. Conclusions This is the first study that we are aware of to explore the use of co-constructed research poetry to better understand how in-person support groups provide support for people impacted by different rare dementias. The poems portray the complex, dynamic and relational aspects of how support groups provide a necessary form of connection for this population. Through rigorous mixed-method analysis, multiple sub-themes and an overarching theme characterised the support groups as a community rather than an intervention. Findings are discussed within the theoretical context of positive social identity, social health and biosocial groups. The results also confidently demonstrate that solicited words from participants can be faithfully portrayed in poems co-created by an experienced poet. This novel finding expands methodological options for the use of research poetry co-constructed from personal experiences and also offers support group members further creative choices for engagement, connection and communication. Future research is proposed that uses research poetry to longitudinally explore biosociality, biosolidarity, agency and active citizenship for PLwRD and care-partners within support groups.