"A torch, a rope, a belly laugh": engaging with the multiple voices of support groups for people living with rare dementia

Paul M Camic; Emma Harding; Sam Rossi-Harries; Oliver S Hayes; Mary Pat Sullivan; Lawrence Wilson; Nikki Zimmermann; Roberta McKee-Jackson; Joshua Stott; Nick C Fox; Catherine J Mummery; Jonathan D Rohrer; Jason D Warren; Rimona S Weil; Sebastian James Crutch

doi:10.3389/frdem.2024.1488025

"A torch, a rope, a belly laugh": engaging with the multiple voices of support groups for people living with rare dementia

Front Dement. 2025 Jan 8:3:1488025. doi: 10.3389/frdem.2024.1488025. eCollection 2024.

Authors

Affiliations

¹ Dementia Research Centre, Research Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, United Kingdom.
² School of Social Work, Faculty of Education and Professional Studies, Nipissing University, North Bay, ON, Canada.
³ Independent Researcher, Sonic Studios, Rye, United Kingdom.
⁴ Research Department of Clinical, Educational and Health Psychology, University College London, London, United Kingdom.

Abstract

Purpose: Rare forms of dementia bring unique difficulties related to age of onset, impact on family commitments, employment and finances, and also bring distinctive needs for support and care. 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.

Methods: Representing seven types of rare dementia, source material was collected from 177 PLwRD and care-partners attending in-person support groups, with the goal of developing research-informed group poems, co-constructed by a facilitating poet. Data were analyzed 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: Linguistic analysis found that co-constructed poems remained faithful to the original source material offered by participants. These results provided confidence to subsequently conduct a thematic analysis of eight completed poems, identifying 15 initial themes. A further relational analysis between themes drew on six relational forms and identified an overarching theme "A Community, Not an Intervention" that describes the process of support for this population. Survey results revealed a varied but generally positive response to writing whilst reactions to the completed poems reflected strong emotional connections that resonated with personal experience.

Conclusion: 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. An overarching theme characterized 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 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 in healthcare and also offers support group members further creative choices for engagement, connection and communication.

Keywords: arts-based health research; linguistic analysis; non-memory led dementia; research poetry; social health; support groups; thematic analysis; young onset dementia.

Grants and funding

The author(s) declare financial support was received for the research, authorship, and/or publication of this article. This work is part of the Rare Dementia Support Impact Project [The impact of multicomponent support groups for those living with rare dementias, (ES/S010467/1)] and was funded jointly by the Economic and Social Research Council (ESRC), part of UK Research and Innovation, and the National Institute for Health Research (UK). The views expressed are those of the authors and not necessarily those of the ESRC, UKRI, the NIHR or the Department of Health and Social Care. Rare Dementia Support is generously supported by The National Brain Appeal (https://www.nationalbrainappeal.org/). Lead investigator S. J. Crutch and E. Harding is an ESRC funded postdoctoral research fellow (ES/W006014/1). JW has received grant support from the Alzheimer's Society, Alzheimer's Research UK, the National Brain Appeal (Frontotemporal Dementia Research Studentship in Memory of David Blechner), the National Institute for Health and Care Research and NIHR UCL/UCLH Biomedical Research Center and the Royal National Institute for Deaf People. The Dementia Research Center was supported by Alzheimer's Research UK, Brain Research UK, the Wolfson Foundation and the National Institute for Health Research University College London Hospitals Biomedical Research Center. PC, SC, EH, OH, SR-H, RM-J, JS, and MS received grant support from the NIHR and ESRC (grant ES/S010467/1) for this study. The funders had no role in the design of the study, in the collection, analyses, or interpretation of data, in the writing of the manuscript, or in the decision to publish the results.