The present study sought to examine the use of co-constructed group poetry as an arts-based health research methodology to further illuminate and understand how rare dementia support groups provide a necessary form of connection for this population. Unlike many approaches to qualitative research, our intention was to solicit brief responses from as many participants as we could recruit, in order to capture as broad a picture as possible of the collective experience of the support groups. We chose to explore the use of poetry because “Poems speak of the mortal condition…about the tragic and glorious issues of our lives” (69, p. ix) in a way quite different from traditional research reports. Echoing Anglo-American poet W.H. Auden (70, p. 60), "Poetry can do a hundred and one things, delight, sadden, disturb, amuse, instruct–it may express every possible shade of emotion, and describe every conceivable kind of event, but there is only one thing that all poetry must do; it must praise all it can for being and for happening". The eight poems created in this study do indeed speak of the mortal condition and they also describe the process of seeking and finding support for forms of dementia that are often misdiagnosed, are not memory-led and likely to first occur before the age of 65. The words in these poems are the exact words of people living with these rare conditions and were put into poetic form by our experienced facilitating poet who had also previously worked with PLwRD and care-partners.
The poems, as one output from this research, stand on their own and convey similar and divergent experiences relating to rare dementia support; they can be read and listened to apart from or concurrently with a formal research paper. This allows the research-generated poems to become widely available for use as a resource to challenge stigmatising cultural messages (70), to provide educational opportunities for healthcare professionals and students in training unfamiliar with rare dementia (66), and as a reflective tool within support groups (72) and by medical practitioners and other learners (73–74). From survey results the completed poems hold true to the lived experiences of those impacted by rare dementia and can be seen, not as representative of all PLwRD and care-partners, but as a reflective umbrella that resonated, mirrored and expanded upon personal experiences.
Methodological and theoretical considerations
Poetry as a research methodology, while not a new approach in qualitative healthcare research, has more recently been attracting additional attention for the possibilities it offers in data collection, collaboration between participants, poets and researchers, and engagement with different audiences, including healthcare practitioners and the general public (e.g., 39, 66, 75–76). In the present study we were particularly interested in using poetry created by larger groups of people to form group poems that describe collective lived experiences. Building on recent online-based research with smaller groups of participants (66), the current project involved a larger sample across different rare dementias and did so within ongoing, in-person support groups. The difference is an important one. Utilising research poetry within an existing, established group allows researchers, group facilitators and group members easily accessible reflective opportunities about their group experiences. A collaborative poem can act as a barometer for a group whilst at the same time respecting the privacy and anonymity of individual members and placing minimal burdens on participating.
The involvement of an experienced poet was also an important methodological consideration. The prompting question solicited words that in turn facilitated a direct contribution about one’s lived experience, rather than participants’ words being extracted from lengthier research interview transcripts or from clinical records (e.g., poetic transcription and ‘found poetry’, 77–78). Because researchers did not selectively choose which words to use, the risk of researcher bias was reduced, if not eliminated, and, equally as important, the voices of participants remained prominent. Through the use of linguistic analysis with the source material prior to thematically analysing the completed poems, confidence was established that this form of co-constructed research poetry remains faithful to the intent of group participants across all dementia groups. This methodological contribution helps to advance the rigour and validity of research poetry as arts-based health research.
The facilitating poet used different poetic forms and devices as suited the words received. Decisions were based on several factors such as assuring words were used from every participant, organising responses into shared narratives, adopting poetic styles to fit the words (rather than altering the words to fit a style), grouping phrases according to the sounds of words and images they fashioned, paring down some of the longer responses, and use of rhythm and repetition. Responses were organised according to what “felt right”. For example, from the poem, A Glass Half Full (Supplemental file S1, p. 1–3), in explaining the poetic process, the poet used “six ‘painful’ lines as a sort of responsive chorus” in order give “a sense of hope and determination, as well as insights into shared experiences of support.” Supplemental file S1 also contains a description of the poet’s decision-making process in relation to each poem.
Additionally, this study offered an opportunity to examine how research poetry might contribute to theory development of support groups for this population. The psychological and social importance of “collective assembly”, described as psychological involvement in social experiences that provide a connection to others in a group (79) was evident across all groups (e.g., in the themes: Part of a Community, Connecting with Peers, Effectual Actions). Although more commonly associated with participating in social movements (80) and attending cultural and sporting events (79), collectively coming together within rare dementia support groups helps to form a social identity that serves to underpin the health and wellbeing benefits of group activity (81) and contribute to the social health of members (82). The groups were seen to provide members with a sense of meaning, purpose and belonging that contribute to an individual’s positive sense of social identity through, for example, creating feelings of “warmth”, “understanding”, “support”, “empowerment”, “sharing difficult moments”, and “being around people who understand”. Positive social identity (83, p .31) is the “knowledge that [we] belong to certain social groups together with some emotional and value significance to [us] of this group membership”, and is particularly important for people from marginalised groups where an adverse health condition is unknown, intractable or untreatable (81). Supporting social relations that are “secure, safe, stable and felt to be legitimate” (e.g., Not Being Alone, A Place of Refuge, Connecting with Peers) “encourages social creativity… by rejecting prevailing negative stereotypes and labels… seeking to replace them with more positive ones” (e.g. Effectual Actions, Transcendence, A Community Not an Intervention) (81, p. 6). Although Taylor (84, p. 21) succinctly describes social identity as “...the cognitive mechanism that makes group behaviour possible”, emotional and behavioural components were also discovered to be highly salient for our participants.
The link between social relationships and health outcomes has been historically well-documented. More recent research over the past 20 years has sought to explain how this occurs, identifying that social relationships influence health through psychosocial, behavioural and physiological mechanisms (85). Unfortunately, few research studies have explored social health amongst people living with dementia, likely due to an overall misconception that people diagnosed with dementia are not able to have satisfactory or worthwhile social relations. Yet seeing people living with dementia and care-partners from a social health perspective brings “attention to their needs of love, comfort, attachment, involvement, identity and meaningful occupation” (82, p. 702) and is a counterbalance to the more commonly held deficiency narrative about disabilities (86) to one of “active citizenship” characterised by new networks to support being a social citizen (87, p. 203). The overarching umbrella theme, A Community, Not an Intervention (Table 7), highlights the contribution of positive social identity to social health and is one way to theoretically understand the value and importance of rare dementia support groups. This is particularly noteworthy considering a recent European consensus on the operationalisation of social health and dementia has been proposed as a direction for future research and practice (88). A multi-nation consensus offers new opportunities to influence ways to support community engagement, develop supportive physical and social environments and expand support programmes offered in community-based meeting centres.
People with a risk factor, cluster of symptoms or a known diagnosis is a biological, not social group (89). Yet, people who are part of these biological groups do come together for mutual support and form biosocial groups. The relatively recent concept of biosocial groups, based on the theory of biosociality (90–91) provides further context for our findings. For example, each group in our study is a neurodegenerative (biological) group. Yet, through a combination of being misdiagnosed and/or the length of time from initial symptoms to diagnosis, being younger than 65 years old at onset, lack of care pathways (92), and few situated structures of support, “new social spaces for PLwRD and care-partners’ support are being cultivated” (40, p. 8). These relatively new biosocial groups, initially determined by a rare dementia diagnosis, have come to embody new social spaces and social networks that begin to create a sense of biosolidarity (93). According to Bradley (93, p. 552), “circular looping effects of biosociality and biosolidarity demonstrate the way community activism and biosociality reproduce each other”. Poetry co-created by biosocial group members, as occurred in the present study, has the potential to contribute to a group’s solidarity and this solidarity, in turn, strengthen social relations and social identity.
Strengths and limitations
A strength but also a limitation of the present study relates to the use of multiple authors for each poem. The poems contain many voices of similar and varied experiences of support and allowed a larger number of people to participate and contribute, yet not everyone contributing to any given poem would have experienced all that each poem conveys. This contrasts with the more usual singular poetic voice found in most poetry, including recent poems by Rory Barnes (37) writing about his experiences with speechlessness as a symptom of PPA. The depth of experience written by Barnes is raw, intense and personal but also conveys, reflects and resonates with others. We argue that both forms of poetry are valuable for healthcare practitioners and researchers, as well as for PLwRD, care-partners, family and friends.
A further strength was the involvement of a larger group of people than is often the case in research with qualitative components. This was made feasible, in part, by our decision to collect brief segments of data from people impacted by multiple types of rare dementia. Qualitative research need not be limited to the commonly used one hour interview with 10–15 or so people; exploring length of data and collection formats can serve to strengthen and broaden qualitative approaches to research (94). A further strength of the study was the facilitating poet’s use of only participants’ words keeping the poems true to their lived experience. In addition, the increased accessibility of participation the method allowed is particularly important for those with atypical symptoms (e.g., predominant language impairments) and for those whose stories are largely underrepresented such as the people involved in this study, all of whom are impacted by rare dementia.
As with all qualitative components of this and other mixed-methods research, the sample is not necessarily representative of the population of people living with rare dementia nor of those attending support groups. It also did not include people in residential care or with levels of impairment that prohibited them from attending a community-based setting. People who attended support groups came from various locations across London and the United Kingdom and were able to travel to a central London location, having the time and resources to do so. The present study also purposely did not collect socioeconomic, ethnicity or level of impairment data. This would not have been possible under our ethics approval agreement that allowed us to recruit participants with only verbal consent. In order to assure the anonymity of those involved in the study and to allow us to collect data in a group setting, it was necessary to minimise identifiable information but this also presents a limitation in describing the sample.
Implications for future research and practice
Biosocial dementia support groups, such as the eight groups involved in this study, offer possibilities for different types of mutual support, joint advocacy, and activism (89). A previous study examined research-informed poetry in virtual environments (66) whereas the present study expanded on those findings by involving ongoing, community-based rare dementia support groups. The high participation rates in the present study, and generally positive response to the process of writing and responding to the poems, suggest implications for both research and practice. The use of linguistic analysis to reveal core narrative structures through text analysis (95) has implications for further literary-based research with this population. To further document the experience of support over time, stages of the dementia journey (96–98) and the group’s development, longitudinal research creating poems over a period time could provide insights into the nuances of group support, social identity, social health, agency, citizenship and biosolidarity. Co-constructing group poems can serve as a reflective, accessible, and non-intrusive way to contribute to the ethos, process and tasks of the group. Poetry used in research also has the potential to be a more democratic and questioning methodology, particularly when written by a group of people, “allowing the expression of subjective and perhaps sometimes even contradictory impressions from participants.” (99, p. 88) The overarching theme from the thematic analysis identified A Community, Not an Intervention as how support is experienced. Further understanding of this concept through the development of a theory of change could provide valuable insights for further research and organisational development (100–101).