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

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Camic, Emma Harding, Sam Rossi-Harries, Oliver S. Hayes, and 11 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4281379/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 06 Jan, 2025 Read the published version in Frontiers in Dementia → Version 1 posted You are reading this latest preprint version 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. Integrative & Complementary Medicine Support groups non-memory led dementia young onset dementia research poetry linguistic analysis thematic analysis arts-based health research social health biosociality Figures Figure 1 Figure 2 Introduction Rare forms of dementia Over 55 million people are estimated to be living with dementia worldwide ( 1 ), and the condition is associated with substantial economic and social costs for individuals, families and wider society ( 2 ). The leading cause of dementia – affecting 60–70% of people with it – is Alzheimer’s disease, which predominantly impacts memory function and is usually diagnosed in those over the age of 65 ( 1 ). However, there are rarer forms of dementia which are non-memory-led, for example those predominantly affecting visual and spatial processing (as in posterior cortical atrophy (PCA) and movement and stability of attention and alertness in Lewy Body Dementia (LBD)), speech and language abilities (as in the primary progressive aphasias (PPA), or personality and behaviour (as in behavioural variant frontotemporal dementia (bvFTD) ( 3 – 5 ). There are also rarer forms of dementia which can be directly inherited (as in familial Alzheimer’s disease (FAD) and familial frontotemporal dementia (fFTD)), and most of these rarer forms disproportionately affect those under the age of 65 ( 6 – 7 ). Rarer dementias are thought to account for ∼7% of all dementias ( 8 – 9 ) and ∼10–20% of dementias in people under the age of 65 ( 10 – 11 ), though these are likely underestimates due to the difficulties in getting an accurate and timely diagnosis ( 12 ). These conditions bring with them unique and complex challenges including difficulties related to age of onset, such as employment and related financial implications, as well as the impact on existing family care commitments ( 13 – 14 ). There are also challenges related to the atypicality of symptoms and widespread lack of awareness of these among health and social care professionals, friends and family, and society more broadly ( 15 – 17 ). These include experiences of stigma, anxiety and frustration due to a lack of access to timely and appropriately tailored services (17;18–20), increased stress and burden for carers ( 21 ), and isolation due to limited access to peers with a shared experience ( 22 – 23 ). Using poetry in healthcare research From healthcare and social science perspectives the use of poetry in dementia care research may seem like strange bedfellows, something that appears out of place and with low priority. Yet, over the past 20 years arts-based health research has increasingly taken an active role in dementia research alongside medical approaches that seek to cure or slow down the progress of dementia. In randomised controlled trials (e.g., 24) and other empirical studies (e.g., 25), and in qualitative research (e.g., 26), the arts have been used “to identify and describe, understand and interpret, represent and communicate social and individual experiences of health and illness across the lifespan” ( 27 , p. 83). Ethological theories lend support to the evolutionary significance of the arts “and help to form a foundation to understand the biopsychosocial processes ( 28 ) involved in arts participation” ( 29 , p. 287). Noted anthropologist Ellen Dissanayake’s research ( 20 ) attributes the ethological importance of the arts to how they can create feelings of mutuality between people, facilitate a sense of belonging, alongside the processes of finding and making meaning. Poetry is an artistic method (among many artistic methods) of nominating a personal (or shared) event or emotion to be appreciated by an audience that did not share that experience directly. The effect of vernacular words is heightened through techniques of, for example, rhythm, rhyme, repetition, metaphor, simile, and analogy, seeking to provide the reader or listener with insights into the poet’s experience. The idea that a poem is always more than the sum of its parts allows emergent connections to be made between ideas that would not be possible via another medium. Writing, reading and hearing poetry is an embodied and interpretive experience that can generate emotional and multisensory understandings ( 31 ), whilst conveying discovery and surprise. Poetry, in casting off the syntactical rules of more typical prose forms, also manages to free itself from some of the limits imposed on language by those rules ( 32 ). In short, poetry allows for the braiding and overlapping of multiple (and sometimes contradictory) emotional truths. We can see then how poetry as a research methodology might allow for an emancipatory relationship between speaking and truth, particularly when working with groups who might otherwise struggle to get their lived experience heard ( 33 ). In order to incorporate the ‘raw words’ of multiple participants into poems, the present study, as explained below, used an experienced poet to facilitate this process. Poetry as a research method can be used to represent and reinterpret existing data ( 33 – 34 ), to assemble field notes, and to collect data (31;35). Poetry, although distinctive from the more disimpassioned voice of usual academic discourse, allows data to be presented that has multiple meanings, is personally and inferentially constructed and allows the voice of multiple participants to be heard ( 36 ), while also closely reflecting the lived experience of those impacted by rare dementia ( 37 – 38 ). Research aims The present study, influenced by research poetry protocols developed by Camic and colleagues ( 39 ), used poetry as a way to represent experiences of support for people living with different rare dementias attending on-going, in-person support groups. With few exceptions, many people with young onset and rare forms of dementia have remained mostly hidden and underserved by health and social care systems in both wealthier and less wealthy countries ( 40 ). The research presented in this study sought to better understand and examine, through co-constructed research poetry, how support groups provide support for PLwRD and care-partners with different types of rare dementia. A secondary aim was to interrogate the source material and completed poems using quantitative and qualitative analysis, to further develop research poetry as an arts-based health research methodology. Methods This mixed-methods study involved soliciting words (source material), in order to create co-constructed poems, from PLwRD and care-partners who were participating in ongoing support groups. As an alternative to traditional qualitative research interviews, the poems created in this study were treated as data and analysed through a three-step analytic process involving linguistic analysis followed by thematic analysis, described below. An online survey was also sent to participants along with each group’s completed poems in written and audio-recorded formats. We were keenly aware that analysing poems using social and behavioural science methodologies might seem an anathema or contradiction to the purpose of poetry as an art form. For arts-based health research to be impactful and meaningful to multiple audiences, however, both the art output (poems) and resulting analysis (linguistic and thematic analyses) are presented. Participants Participants were recruited from eight support groups for people impacted by rarer forms of dementia and members of (blinded), an organisation in the London area representing seven different types of dementia (Table 1). Although we did not collect information about previous poetry experiences, a few participants voluntarily shared that they write and/or read poetry on a regular basis. Support group sessions occurred in accessible community settings and involved presentations from healthcare professionals on topics related to the group, facilitated discussions, informal peer-to-peer discussions and time to socially interact with peers and/or professionals ( 41 ). Seven of the support groups were diagnosis-specific and one was a mixed rare dementia group. Sixty-one percent of the 290 members (N = 84 (PLwRD), N = 182 (care-partners), N = 24 (people genetically at risk)) who were invited to participate took part (N = 177). They ranged in age from early 20s to mid-70s (Table 2) and were approximately 55% female. Ethical approval was obtained from (blinded) university ethics panel (approval number: 8545/004). Participation was by verbal consent at the time of support group meetings and included the following information presented in writing two weeks before each group and repeated verbally on the day of the group: “( 1 ) that by participating in the poetry creation exercise you would be providing consent for your contribution to be included in analysis of the poetry and any possible future publications, ( 2 ) you will not be personally identifiable in any publication and, ( 3 ) that your contributions will not be linked to you or data storage or processing purposes.” Table 1 Participation by type of rare dementia Group N a/b Participation rate (%) Mixed Rare Dementia 14/14 100 Posterior Cortical Atrophy (PCA) 60/32 53.3 Familial Alzheimer’s Disease (fAD) 30/20 66.6 Familial Frontotemporal Dementia (fFTD) 11/6 54.5 Lewy Body Dementia (LBD) 24/18 75.0 Frontotemporal Dementia (FTD) [including behavioural-variant and semantic-variant types] 56/32 57.1 Primary Progressive Aphasia (PPA) 66/36 54.5 Young Onset Alzheimer’s Disease (YOAD) 29/19 65.5 Total 290/177 61.03 N = a invited/ b participated Table 2 Participation by age group Age range Number (%) 20s 14 (5.3) 30s 26 (9.9 40s 34 (13.0) 50s 95 (36.2) 60s 80 (30.5) 70s 13 (4.9) Procedure Our approach to creating poems was designed to allow people to contribute to a poem with a single word, a series of unconnected words, or a complete sentence. We wanted to increase the accessibility of participation for people who may have specific difficulties responding due to impairment (e.g., language, memory, visual) and/or may be intimidated by writing poetry. Approximately two weeks before each group met, an invitation to participate, including information about the project and ethics approval details, was provided in each group’s newsletter. During the support group meeting a researcher also explained the project verbally and responded to questions. Participants were given a pen and sheet of paper with the prompts written in 14-point Arial font and asked to respond in writing to either prompt; prompts were also read aloud. Responses were folded for privacy and were collected at the lunch break in order to allow time for responding. As part of the protocol, the directions provided to participants in the newsletter and repeated at the meeting were as follows: “Please write your words in any form you would like after one of the prompts. You can write one word, a complete sentence or simply any words you want to use. Since this is poetry in the making, please consider your emotions, images that come to mind, thoughts and experiences as you write. How does this group support you as someone living with or living at risk of (type of dementia) or as a care-partner for someone with or living at risk of (type of dementia)? [The second prompt was oriented for members new to this group:] How would you like the group to support you? What support do you need from this group?” For those people who had difficulty writing or with vision issues (N = 3), a researcher recorded their responses and read it back to assure accuracy. Responses were anonymous and once collected were given to the facilitating poet. Using only verbatim responses the poet included words from all participants to form poems for each of the eight groups. Within two weeks completed poems were sent to all group members (including those who did not participate) along with a link to an online anonymous Qualtrics survey soliciting information about the process of collecting contributions (to those who participated) and reactions to the completed poems (for all members): What did you think and feel about the completed poem? Please be candid. If you participated in writing the poem by sharing your words, what was your experience of writing the words that you did in a group setting? Was it easy, comfortable, difficult, enjoyable, challenging, helpful/unhelpful, silly, etc.? Could we have done anything differently to make it a more useful experience? In your opinion, do you think poetry writing workshop sessions, in-person or online, for people impacted by rarer forms of dementia might be helpful as a tool to help process your experiences? Please provide as much detail as you would like. Do you think that reading poems like this one, created by people affected by rarer dementias, would be useful for the general public and health/social care professionals to read, in order to increase awareness of rarer forms of dementia? Data analysis Data analysis involved three steps. Firstly, we investigated how faithful the completed poems were to the source material (initial responses to the prompts). To do so, linguistic analysis and word count software (Linguistic Inquiry and Word Count-22 (LIWC-22)( 42 ) was used to analyse language data ( 43 – 44 ). It was important to determine if the completed poems reflected the words drawn from the source material in order to feel confident that we could conduct a thematic analysis using the poems. Secondly, once this was established, a structured tabulated thematic analysis (ST-TA)( 45 ) was used to examine themes from each poem and to compare codes and themes across poems, and thirdly, this was followed by examining relationships between themes ( 46 ). After each poem was sent to members, an online survey was conducted to gather free-text responses about their participation experiences. This data was also analysed thematically. Linguistic analysis The source material and poems created from that material were compared in terms of total words, type/token ratio (total different words [types]/total words [tokens]), concreteness (the extent to which a word or concept evokes a (multi)sensory experience), age of acquisition (AoA; the age at which people learn a particular word), and contextual diversity (the number of contexts in which a word appears), plus their emotional content was examined using normative data for emotional valence (the pleasantness of a stimulus), arousal (the intensity of emotion provoked by a stimulus) and dominance (the degree of control exerted by a stimulus) ( 47 – 48 ). Wilcoxon ranksum tests (for unmatched data, though noting the lack of independence for shared words) were used for comparisons of lexical variables. The poetry task was framed openly to encourage participation, and yielded written contributions of multiple sizes (e.g., word-level, phrase-level) and different levels of richness. These contributions were analysed using the LIWC-22 ( 42 ) text analysis tool. LIWC’s core function is to compare words in an imputed dataset to each of its dictionaries and sub-dictionaries (> 12,000 words) and assign syntactic and semantic information. For example, “howled” would register in verbs, past tense, emotion, negative emotion, sadness, and more. The global category scores for a dataset then represent the percentage of items in the dataset which fit in this dictionary. Developed by researchers interested in social, clinical, health and cognitive psychology, LIWC is uniquely placed to inform on psychological and social states identifiable at word-level. Psychological work has harnessed LIWC for 20-plus years including work on trait and personality ( 49 ), social dominance ( 50 ), group processes ( 51 ), and mental health research ( 52 – 53 ). Separate files were prepared for the source material and poems for each of the 8 participant groups. LIWC scores for these texts were acquired for the four standard LIWC summary variables – analytic (the degree to which people use words that suggest formal, logical, and hierarchical thinking patterns), clout (the relative social status, confidence, or leadership that people display through their writing or talking), authentic (words which reflect people talking in an honest, spontaneous way, without self-regulating or filtering what they are saying) and tone (combining positive and negative words, with higher scores indicating positive emotional tone and scores below 50 indicating negative tone) – plus more detailed affect and emotion counts (overall, positive, negative). Separate comparisons were conducted for non-corresponding words, i.e., the minority of words that appeared in the source material but not the poems, or in the poems but not the source material. Structure within the source material and poems was considered further by generating LIWC-22 narrativity scores for staging, plot progression, and cognitive tension plus an overall measure. These scores reflect how closely any given text resembles "standard" structures used by storytellers across a range of different standard texts, with scores ranging from + 100 (perfectly aligned with the normative shapes) through 0 (no relation) to -100 (opposite of normative structures). Wilcoxon signed-rank tests were used to compare source and poem structures. An additional examination of structure and word order was also piloted with one community poem, exploring the extent to which contributed words were maintained in precise form and within/outside contributed phrases in the final poem. Structured tabular thematic analysis (ST-TA) There are several approaches to thematic analysis used in the social and healthcare sciences ( 54 – 55 ) with some adhering to a prescribed epistemological stance ( 56 ) while others take a more pragmatic approach ( 57 ), which allows for increased analytic flexibility. Considering the present study used a mixed-methods approach that also involved many more participants than is usual in qualitative research, and the data is drawn from relatively brief texts, the structured tabular approach to thematic analysis was chosen (ST-TA) ( 45 ). ST-TA partially draws upon Boyatizis’ ( 58 ) and Braun and Clarke’s ( 59 ) approaches to thematic analysis whilst underpinned by a critical realist epistemology ( 60 – 61 ) that seeks to balance reflective and positive-reductionist approaches. Robinson’s approach was also developed to analyse briefer texts than the more typical one-hour long interviews found in many qualitative studies. The Standards for Reporting Qualitative Research ( 62 ) guided the qualitative components of the study. Results It was decidedly not our intention to subsume reading the poems with a formal analysis. We are aware that the poems themselves may portray deeper and more vivid meanings than can be identified analytically, and that is, we argue, one of the contributions of poetry and arts-based health research to portraying the human condition. However, putting these important considerations aside, this research sought to explore how research poetry might be used as a methodology to further our understanding of what support means for people impacted by rare dementia. The eight poems and source material created in this project can be found in supplemental file (S1). They are referenced in the linguistic analysis and thematic analysis below. The poems can, however, also be read independently of our analysis, which we encourage readers to do. Linguistic analysis The source material (N = 1929 words) and words used in the finished poems (N = 1807) showed a high degree of correspondence, with 65% of source words appearing at least once in the corresponding poem, and 89% of poem words being contributed in the source material. No significant differences were found in any of the linguistic variables examined, suggesting that overall, the poems were faithful (i.e., well matched) to the source material (see Table 3). In the analyses of non-corresponding words (see Figs. 1 and 2), the few source words that were not included in the poems tended to be words not classified as ‘authentic’, and where words with affect were added to the poems, they were slightly more likely to be positive than negative, though the number (%) of words added is very small (27 [5%]) and probably has little bearing. Table 3 Comparison of source material words to completed poems Source material Poems Correspondence/comparison Total words 1929 1807 65% (1253/1929) source words in poem 89% (1615/1807) poem words in source material Total different words 663 587 84% (560/663) source words in poem 95% (560/587) poem words in source material Type/token ratio 0.34 0.32 - Valence [Ns 659, 583] 0.59 (0.12) 0.59 (0.12) z = -0.41, p = 0.69 Arousal [Ns 659, 583] 0.38 (0.06) 0.38 (0.06) z = -0.40, p = 0.69 Dominance [Ns 659, 583] 0.58 (0.08) 0.58 (0.08) z = -0.41, p = 0.68 Concreteness [Ns 659, 583] 0.44 (0.16) 0.44 (0.16) z = 0.18, p = 0.85 Age of Acquisition [Ns 659, 583] 7.95 (2.44) 7.89 (2.37) z = 0.31, p = 0.75 Contextual diversity [Ns 513, 452] 8.21 (1.95) 8.27 (1.90) z = -0.44, p = 0.66 Type/token ratio = total different words (types)/total words (tokens). Mean (SD) ratings for emotional content of words assessed using normative data for emotional valence, arousal and dominance plus concreteness, age of acquisition (AoA) and log 10 contextual diversity (lgCD) ( 47 – 48 ) Narrativity scores for each of the source materials and poems are shown in Table 4. Although poems yielded numerically higher scores for each narrativity measure except cognitive tension, there were no significant differences on these measures. Table 4 LIWC-22 narrative arc scores LIWC-22 Arc of narrative average score Staging Plot progression Cognitive tension Source Poem Source Poem Source Poem Source Poem Group 1 mixed 8.39 58.27 61.89 69.85 7.93 77.57 -44.87 27.38 Group 2 PCA -3.23 49.05 47.2 83.68 -20.29 -1.54 -36.58 65.02 Group 3 fAD 20.47 20.74 41 44.31 -26.82 39.57 47.24 -21.65 Group 4 fFTD 21.64 -25.31 67.63 -20.79 47.8 -36.58 -50.52 -18.58 Group 5 LBD -18.15 -32.38 -17.29 -19.98 1.98 -12.45 -39.12 -64.71 Group 6 FTD -39.47 2.4 -29.23 73.67 -42.03 -29.63 -47.14 -36.84 Group 7 PPA 27.54 31.16 43.32 71.51 7.53 -24.41 31.77 46.38 Group 8 YOAD 40.14 54.85 75.88 83.96 -19.54 75.97 64.09 4.63 Wilcoxon signed-rank test comparisons z = -1.26, p = 0.25 z = -1.40, p = 0.20 z = -0.70, p = 0.55 z = -0.56, p = 0.64 The manual examination of word order used poem 4 (fFTD; see S, p. 10–11) as an example. Of the 58 individual words in this poem, 49 (84%) appeared exactly as in the source material, with the remaining 9 (16%) being adapted from source words (e.g., caring --> care). 50/58 (86%) of the individual words were drawn from phrase rather than single word source contributions. 37 words featured in the final poem as whole phrases or fragments of phrases. 33/37 (89%) of those words maintained the exact word order in which they appeared in the source material. At the contribution level, all 8/8 (100%) contributions yielded at least one word which featured in the final poem. Although contributions were not prioritised or ordered, the poem drew on each contribution in a non-sequential fashion, with the sequential order of individual poem words reflecting 26 sampling transitions throughout the poem. The results of the linguistic analysis provides confidence that co-constructed poems created by support group members and a facilitating poet remained faithful to the source material words provided by PLwRD and care-partners. These results allowed us to subsequently conduct a thematic analysis of the completed poems, reported in the next section. Thematic analysis Coding and theme development was an iterative process. In order to assure trustworthiness of the analysis ( 63 ), three researchers independently coded the poems and through discussion, sought “interanalyst agreement to form a working intersubjective consensus” ( 45 , p. 197) rather than the statistical approach of interrater agreement. This more adaptable, albeit time-consuming method, allowed for deeper discussions and idea development. A flexible epistemological approach, critical realism ( 64 ), which is also relevant for brief texts ( 45 ) was used to guide coding and theme development. Poems were read several times before beginning coding. Initial coding identified 41 codes across all poems. Table 5 contains a list of codes, frequency of codes across poems and occurrence in specific poems. This information is presented to increase transparency and clarity about the coding process and follows recommendations by Robinson ( 45 ) to present code frequencies as part of a structural approach to qualitative research. Codes ‘Strategies and Information’, ‘Not Being Alone’, ‘Part of a Community’, ‘Connecting with Peers’, ’Beacon of Hope’, ‘Transcendence’, ‘Dynamic Sharing’, ‘Nurtured’, ‘Professional Input’ ‘Empathy’ and ‘Rocky Journey’ had the highest frequency within individual poems and occurred in at least half the poems. Other codes were more closely identified with poems representing specific rare dementia groups (e.g., ‘Discovering’ (FTD, PPA,YOAD), ‘Empowering’ (fAD, FTD, PPA, YOAD), ‘Reassurance’ (PCA, fAD), “What about the Future?’ (PCA, fAD). Table 5 Initial codes, frequency and associated poems Codes Frequency across all poems Occurrence in number of different poems Name of poem associated with code 1 Beacon of hope 15 7 1,2,3,5,6,7,8 Brings people to the group 5 4 1,5,6,7 Caring 3 1 4 Communication 3 2 5,7 Connecting with peers 16 8 1,2,3,4,5,6,7,8 Darkness 1 1 1 Dignity 1 1 6 Discovering 4 4 6,7,8 Dynamic sharing 11 5 3,4,6,7,8 Effectual actions 5 2 7,8 Empathy 9 4 4,5,6,8 Empowering 6 4 3,6,7,8 Excluded 1 1 7 Gives me control 1 1 3 Happens from being in the group 7 2 5,6 Hope 4 4 1,3,6,8 Humour 4 4 1,6,7,8 Included 2 1 7 Increasing understanding 4 3 3,6,7 Inspiration 2 2 6,7 Mentoring 3 2 3,6 Not always relevant 2 2 7 Not being alone 21 7 1,2,3,4,5,6,7 Nurtured 8 4 2,3,6,7 Overwhelmed & heart-breaking 1 1 1 Part of a community 21 7 1,2,3,5,6,7,8 Place of refuge 9 4 1,5,6,8 Possibilities 3 2 3,7 Professional input 9 6 2,3,5,6,7,8 Reassurance 2 2 2,3 Recognition 5 3 3,5,6 Roadmaps 7 2 6,8 Rocky journey 10 4 1,2,6,8 Safety 3 1 1 Self-expression 1 1 7 Sharing 5 3 1,2,6,7 Strategies & information 35 8 1,2,3,4,5,6,7,8 Supportive/support 8 6 3,4,5,6,7,8 Transcendence 13 6 1,3,5,6,7,8 Uncertainty 1 1 3 What about the future? 5 2 2,3 1 1 = A Glass Half Full (mixed rare dementia), 2 = You are Not Alone (PCA), 3 = Instead of Alone (fAD), 4 = Reminder (fFTD), 5 = More Than (LBD), 6 = I Honestly Didn’t know (FTD), 7 = We Help Each Other (PPA), 8 = A Beacon in the Fog (YOAD) Themes and narrative synthesis from individual poems Table 6 presents 15 primary themes from individual poems with accompanying narrative synthesis ( 65 – 66 ). The narrative synthesis is a brief snapshot of the identified themes and their relationship to each other within individual poems and was influenced by Robinson’s ( 46 ) use of relational analysis as an additional technique to aid data integration. As Table 6 indicates, some themes were prominent in multiple groups whilst others were not. Themes were developed by carefully assessing the codes in Table 5. We looked for commonalities and differences between codes and made decisions about theme development aided, in part, by the frequencies of codes presented in Table 5. It is important to note, however, that whilst there is a good deal of thematic overlap between poems, the nuanced relationships between themes also indicates subtle and not so subtle variations and differences as seen in this excerpt from the poem, A Glass Half Full: A glass half full Laughter in a dark space Happy amongst friends Share the difficult moments Safety in numbers A shared experience An answering shout through the fog Togetherness in a time of feeling alone For example, although the code ‘Strategies and Information’ was identified in all 8 poems, after further refinement (by integrating codes ‘Strategies’, ‘Strategies and Information’, ‘Effectual Actions’, ‘Increasing Understanding’ and ‘Roadmaps’) it was identified as a theme that was prominent in 4 poems (mixed rare dementia, PCA, FTD, LBD). Likewise, as another example, the codes “Safety, ‘Nurtured’ and ‘Place of Refuge’ shared similarities and analytically were combined to form the higher order theme, Place of Refuge, identified in 7 poems. This is not to suggest that these themes are absent in other group poems, but they hold a more prominent position in these examples. An excerpt from the poem, I Honestly Didn’t Know: Signposts the way along a rocky journey Someone professional to talk with People in the same situation help so much Knowing I am not alone An open door with a warm welcome At a time when it felt all other doors had slammed shut The strength to carry on Help weathering the storm A lantern of light in what I know will be darkening days ahead To talk to people who understand A chance to share, laugh, cry and breathe In another example, the complex theme 'Dynamic Sharing’ is taken as an in vivo term named by a participant. It integrates the codes ‘Caring’, ‘Discovering’, ‘Dynamic Sharing’, and ‘Sharing’ and is defined as an exchange of different types of support and a flexibility in responding to different levels of need among group members. Dynamic sharing is an action and is neither a linear nor a top-down approach but is seen as interactional and relational and occurring between PLwRD, care-partners and professionals. What is shared involves a range of phenomena and might include emotional support, humour, suggestions about financial help, personal stories and information about recent research. An excerpt from the poem, A Beacon in the Fog: A beacon of hope Counting to ten Without feeling exhausted Lancing the pain To find the joy still below Help at last World-class information The long night’s journey into day Understanding what I am dealing with Like an embracing warm hug Table 6 Themes from individual poems and accompanying narrative synthesis Poem Title Dementia Group Themes Narrative Synthesis A Glass Half Full Mixed Strategies and Information Dynamic Sharing A Place of Refuge Part of a Community For this group with members living with different rare dementias, the poem highlights the necessity to share a dark space and a safe space as two aspects of what support means. This was captured by “heartbreak” plus humour, hope and happiness, which is poignantly acknowledged by the phrase, “A torch, a rope, a belly laugh”. The need to express pain and share hope for the future, as aspects of support, is seen as a time to connect with self (the dark, how best to live with dementia) and also connect with others (the hope, the relief). This space is, critically, relational where connecting with peers has helped to form a community. You Are Not Alone Posterior cortical atrophy (PCA) Strategies and Information Part of a Community Beacon of Hope This poem conveys the strong need to obtain for oneself, and to provide to others, strategies and information about the social, medical and support needs of PCA. This occurs within the vital context of being part of a community. The group is experienced as a lifeline of safety whilst also navigating the darkness of uncertainty, “a helping hand out of the wilderness”. Importantly, it is a relational community space (“like-minded people’, “getting to know others”, “new friends for life”) that involves giving to and receiving from others “through the good days” and “through the bad days”, possibly like darkness and hope as both sides of a coin. Instead of Alone Familial Alzheimer’s disease (fAD) Part of a Community What About the Future? Not Being Alone There is an intimacy in these words that are slightly different than other poems through the physical expression (e.g., “a hug in the dark”; “it feels like wings are wrapped around me”). “I feel like I am in a room with people instead of alone” and “Part of a wonderful tribe” describes the sense of being connected with others in the group and part of a community and not an intervention. More reference, as might be anticipated due to the familial and inherited aspects of this condition, to the future was seen in this poem with respect to treatment, research and worries about children. Reminder Familial fronto-temporal dementia (fFTD) Unconditionality of Support Dynamic Sharing Not Being Alone Empathy Part of a Community Not being isolated or alone, whilst perhaps a descriptive state, was powerfully felt in this poem. Terms not seen in other poems, “unconditionality” and “unconditional”, convey the importance of empathic caring for others who experience fFTD. Being part of a community that understands and cares for others through personal connections, strategies and empathy as part of dynamic caring, which alone with unconditionality of support appear to be the overarching themes in this poem. More Than Lewy body dementia (LBD) A Beacon of Hope Transcendence What About the Future? Strategies & Information Connecting with Peers Professional Input The life turbulence that brings people to this support group includes being scared, feeling alone, a tremendous uncertainty about the future and making decisions about “Switzerland service”, a reference to assisted dying that is not yet legal in the United Kingdom. Together with emotional needs, people attend to pursue information and answers to questions about Lewy body dementia that have often been elusive or not available from non-specialist healthcare professionals. These questions were met by support that included recognition, hands-on strategies offered by group members during the experience of connecting with each other, and a sense of transcendence of being “more than my diagnosis”. I Honestly Didn’t Know Frontotemporal dementia (FTD) A Rocky Journey A Place of Refuge Dynamic Sharing Professional Input Empathy The poem points to a rocky journey and the impact on relationships that FTD can have. The group as a “mutual ground” is seen as a place of refuge and a “loving bridge” to share how others have coped with FTD. Dynamic sharing involves members helping each other to obtain guidance, develop knowledge, gain awareness and feel strong emotional support. This empowering support helps to centre and inspire, “to keep me going” through anticipated dark days ahead and “weathering the storm” of uncertainty and isolation. Whilst support from professionals is positively acknowledged, the peer support from group members is repeatedly highlighted. Members feel recognition and empathy from and towards each other. We Help Each Other Primary progressive aphasia (PPA) Dynamic Sharing Part of a Community Exclusion, Frustration and Disappointment Being part of a larger, supportive and inspiring community features vibrantly in this poem. The sense that someone is always there who can provide comfort, inspiration and humour helps to balance out the roughness of the “tsunami” that living with PPA can entail. The transcendence of “A hot air balloon that can take me to better places” through “information, knowledge, kindness, reassurance” is part of dynamic sharing and is a powerful component of the group. A decrease in verbal communication abilities is one of the symptoms of more advanced PPA yet “poetry” which “speaks my music even when I cannot”, was seen as an empowering and a less difficult tool for self-expression and one that allows participation in a community. For some, however, frustration and disappointment was experienced, as was a sense of being excluded. This was an important reminder for us of communication differences, “Thoughts hard to align'' need to be continually addressed, and that support is not necessarily immediate, “So far it doesn’t. But possibilities there.” A Beacon in the Fog Young onset Alzheimer’s disease (YOAD) Effectual Actions Dynamic Sharing A Place of Refuge Part of a Community By providing opportunities for sharing one’s lived experience, together with professional expertise within an emotionally rich and empathic environment, the group offers refuge from the uncertainty and general lack of information surrounding young onset Alzheimer’s disease. The group also offers effectual actions that help to mitigate uncertainty. As a perceived lifeline in times of uncertainty, the support provided by the group is experienced as being dynamic in that it emboldens members and attending professionals to connect with each other through shared stories, questioning and offering insights. These experiences help to navigate a complicated personal and healthcare landscape, cutting through deep uncertainty, dissipating fear and providing a vision for the future. Relationships between themes across poems In addition to identifying themes pertinent to individual poems we were also interested in understanding the relationships between key overarching themes across the corpus of all eight poems (Table 7). This involved actively exploring “whether a consensus, synthesis or unity can be found within the plurality of viewpoints” ( 45 , p. 195) voiced by our diverse group of participants. To do this we re-read the poems as a corpus of work, re-examined coding, themes and relations between themes across the poems rather than only within a poem. As stated previously, Robinson ( 46 ) suggests articulating key relational forms to help explore the possible relationships between analytical themes. As a reminder to readers, our prompting question to participants was, How does this group support you? The relational statements in Table 7 draw on six different relational forms in an attempt to develop a deeper understanding about the process of support groups for people impacted by rare dementia. Table 7 Summary of key relational forms, thematic elements and relational statements Key relational form ( 46 , p. 201–205) Thematic elements Relational statement Comparative relations Comparative relations are those that link two or more themes by highlighting a similarity or difference between them ( 67 ). Rocky Journey A Place of Refuge Not Being Alone On the often long and Rocky Journey (e.g., “it’s rough, it’s tough”, “resisting help. “Challenging”. “Persuade”) from first worrisome symptoms, to obtaining a diagnosis, to finding support, the groups provide a personal safe haven that softens the sense of being alone and isolated (e.g., “In what I know will be darkening days ahead”). Even with support, it is not as if the journey does not remain difficult and challenging, but the dreaded sense of isolation is lessened (e.g., “I feel like I am in a room with people instead of alone”, “I am not alone”, “reduces the sense of that feeling of being unknown.”). Semiotic relations “One theme signifies or symbolises one or more themes. Symbols have a visual or sensory resemblance to which it symbolises, while a sign has no physical resemblance to that which it signifies” ( 46 , p. 2011) Part of a Community Connecting with Peers Beacon of Hope Being part of a community (e.g., “I’ve found new friends for life”, “share the difficult moments”, “being around people who understand”), is a sign that meaningful connections are occurring between group members. These connections with peers (e.g., “Provides some sense of reason”, “Friends. Relief. Mutual support.”, “A torch, a rope, a belly laugh”) are symbols that “provides a vision for the future”, “a light of what might be possible”, “an answering shout through the fog”. Evocative relations Linking one theme to another using a metaphor or simile ( 68 ). “Metaphors and similes imply the nonliteral equivalence of different phenomena rather than literal linkage of the comparative relation” ( 46 , p. 202) What about the Future? Transcendence The certainty of uncertainty is constantly present for many people with rare dementia (e.g., “What do I discover?”, “Is life over?”) and feelings of being “Excluded”, “Disappointed” and “Frustrated” are not unusual. Yet these very present life-impacting uncertainties can produce remarkable responses through group support (e.g., “A gift of independence, a way through”, “A normalisation of this new abnormal world”). A tremendous loss can be transcended (e.g., “Here the gift I had, which has been taken from me. Can now be turned to poetry. A light in the darkness.”) Contingency relations A likely or necessary condition for a phenomenon to occur. A Rocky Journey→ A Place of Refuge Part of a Community The support groups provide refuge (e.g., “An open door with a warm welcome”, “Centring, keep me going”, "Understanding by a look”) from the many challenges of living with rare dementia (e.g., “What about my kids?”, “What might we come up against?”, “Is life over?”). Although it may appear counterintuitive, the tremendous uncertainty of the journey creates the need for refuge. Refuge, however, does not necessarily imply a community. A place of refuge within the context of rare dementia, is a precursor to being part of something larger (e.g., “The group is like a family”, “Friends, relief, mutual support”, “The group is there for you”). Reciprocal relations Bi-directional forms of influence within social interactions. A Place of Refuge Dynamic Sharing Feeling the “Warmth. Understanding. Support”, “Empowerment”, “Confidence” of a place of refuge is influenced by, and also influences, multiple forms and types of sharing (e.g., “Sharing practical ideas and opportunities”, “The group reminds, provides, offers support, help and care”, “There are experts available to answer questions”, “Connecting the dots even when I cannot see them”). Conceptual part-whole relations Multiple lower-order themes are linked to an overarching, higher order conceptual theme. A Community, Not an Intervention ~Dynamic Sharing ~Strategies and Information ~Part of a Community ~Connecting with Peers ~Professional Input ~Transcendence ~Effectual Actions Although the members of the support groups seek strategies, information and help from each other and professionals that attend, the relationships between professionals and PLwRD and care-partners are reciprocal, interactive and relational. Professionals are not described as providing an intervention, which is more typically associated with their role. Connecting with Peers (e.g., “To hear stories of other people”, “That sense of connection-well needed”, “I loved meeting people like me”) is a vital component of support and involves physical and emotional interaction. PLwRD and care-partners along with professionals, contribute to the group through what we have identified as Dynamic Sharing (e.g., “Through laughter and understanding”, “Information of available services”, “Translating negative into optimism”, “New research”). The support felt from the groups as a community provides a sense of self Transcendence (e.g., “It’s like a lily pad and a frog. Everyday I jump on another pad”, “Dispersing the fog", "A hot air balloon taking me to different places”), Effectual Actions (e.g., “Dispelling fear”, “Lancing the pain”), Connecting with Peers (e.g., “I loved meeting people like me”, “Caring for others”). This phase of the analysis also identified an overarching or meta-theme, A Community, Not an Intervention. Support groups are experienced not as a clinical service, but as an ‘umbrella’ that involves reciprocal, interactive and relational components and resources. Interventions are constructed medical and psychological processes and procedures that healthcare professionals ‘do’ to/for patients, and there are circumstances and situations where interventions are necessary and helpful. The poetry written in the present study conveys something quite different however. Support is conceptually framed through taking place in a community that is strongly relational and contains multiple elements or themes. These include Dynamic Sharing, Strategies and Information, Part of a Community, Connecting with Peers, Professional Input, Transcendence and Effectual Actions. An underlying thread involves active involvement of members sharing information and offering psychological and social support with each other in the context of a non-hierarchical environment. People with lived experience along with professionals form the community, an important distinction from only peer-led support groups, groups facilitated by a professional or services offered by healthcare organisations. Survey feedback Eighteen people completed surveys (11 care-partners, 7 PLwRD). Four (all care-partners) did not participate in contributing to the poems. Although fewer than we had hoped, responses provided useful information for future research and practice. However, having so few responses (11%), we chose only to do a descriptive analysis ( 54 ). Complete responses to each question and the analysis are found in Supplemental file S2. Discussion 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 ). Conclusion The flexibility of research poetry encourages methodological innovation that can involve different qualitative, quantitative and mixed-method analysis. The poems created in this study portray the complex and dynamic aspects of how support groups provide support for people living with rare dementia and care-partners. Through rigorous mixed-method analysis, multiple sub-themes and an overarching theme, A Community, Not an Intervention, were identified. Findings are discussed within the theoretical context of positive social identity, social health and biosocial groups. Methodologically, the results also confidently demonstrate that solicited words from participants can be faithfully portrayed in poems co-created by an experienced poet. This latter finding expands 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. Declarations Acknowledgements We would like to thank Rare Dementia Support (https://www.raredementiasupport.org/) and the people living with rare forms of dementia and their care-partners for participating in and helping to shape this research. Additional thanks to our research funders for their generous support and anonymous grant reviewers for their encouragement to explore poetry as a research methodology in this population. The Dementia Research Centre is 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 Centre. Declaration of Conflicting Interests The authors declare no conflicts of interest with respect to the research, authorship, and/or publication of this article. 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. Authors Camic, Crutch, Harding, Hayes, Rossi-Harries, McKee-Jackson, Stott and Sullivan received grant support from the NIHR and ESRC (grant ES/S010467/1) for this study. Funding The author(s) disclosed receipt of the following financial support 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 is 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. E. Harding is an ESRC funded postdoctoral research fellow (ES/W006014/1). JDW 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 Centre and the Royal National Institute for Deaf People. Ethical Approval The study has been approved by the research ethics committee at University College London (8545/004: Rare Dementia Support (RDS) Impact Study). The research presented in this paper adheres to the Declaration of Helsinki’s ethical principles for research involving human participants. 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Supplementary Files SupplementalfileS1Poems.pdf SupplementalfileS2Surveyresponses.pdf Survey: Descriptive qualitative analysis followed by verbatim responses to questions Cite Share Download PDF Status: Published Journal Publication published 06 Jan, 2025 Read the published version in Frontiers in Dementia → Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4281379","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":292297225,"identity":"a31b1cdb-843c-4536-8b29-78fadcb2c185","order_by":0,"name":"Paul M. 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Warren","email":"","orcid":"https://orcid.org/0000-0002-5405-0826","institution":"University College London","correspondingAuthor":false,"prefix":"","firstName":"Jason","middleName":"D.","lastName":"Warren","suffix":""},{"id":292304895,"identity":"d2785d32-9c19-42cb-8c22-1e8c9cf3f7bb","order_by":13,"name":"Rimona S. Weil","email":"","orcid":"https://orcid.org/0000-0002-5092-6325","institution":"University College London","correspondingAuthor":false,"prefix":"","firstName":"Rimona","middleName":"S.","lastName":"Weil","suffix":""},{"id":292304896,"identity":"1a2e8229-6849-4c20-9b90-33fc629d7822","order_by":14,"name":"Sebastian J. Crutch","email":"","orcid":"https://orcid.org/0000-0002-4160-0139","institution":"University College London","correspondingAuthor":false,"prefix":"","firstName":"Sebastian","middleName":"J.","lastName":"Crutch","suffix":""}],"badges":[],"createdAt":"2024-04-17 10:49:59","currentVersionCode":1,"declarations":{"humanSubjects":true,"vertebrateSubjects":false,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":true,"humanSubjectConsent":true,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-4281379/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4281379/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.3389/frdem.2024.1488025","type":"published","date":"2025-01-07T00:00:00+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":55004495,"identity":"758e21f8-ee13-4a16-8e29-3ce0259c93be","added_by":"auto","created_at":"2024-04-19 18:46:34","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":115433,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eLIWC summary values across source material and poems\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-4281379/v1/ba9e32f82ba225195154e644.png"},{"id":55001785,"identity":"3814e505-1ddd-41bf-98fc-6b67df7c5b4b","added_by":"auto","created_at":"2024-04-19 18:38:34","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":116252,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eLIWC affect and emotion across source material and poems\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNarrativity scores for each of the source materials and poems are shown in Table 4. Although poems yielded numerically higher scores for each narrativity measure except cognitive tension, there were no significant differences on these measures.\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-4281379/v1/a23ef904ac9d4f367eaf72cb.png"},{"id":73396339,"identity":"9a7a7897-27a5-4864-a02d-0c9c86a88a33","added_by":"auto","created_at":"2025-01-09 13:51:03","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":2022021,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4281379/v1/0008b665-1ff1-43dd-bdc4-7d94412f5eb0.pdf"},{"id":55004496,"identity":"7859be8c-bd71-44e8-951b-d562083beec8","added_by":"auto","created_at":"2024-04-19 18:46:34","extension":"pdf","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":304886,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementalfileS1Poems.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4281379/v1/5ff9232424347efd0c5ca9db.pdf"},{"id":55001782,"identity":"7569a354-9de5-434a-b389-37ab48be4d8e","added_by":"auto","created_at":"2024-04-19 18:38:34","extension":"pdf","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":179336,"visible":true,"origin":"","legend":"\u003cp\u003eSurvey: Descriptive qualitative analysis followed by verbatim responses to questions\u0026nbsp;\u003c/p\u003e","description":"","filename":"SupplementalfileS2Surveyresponses.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4281379/v1/089c4be06ca0f07eb9b98786.pdf"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003e'A Torch, a rope, a belly laugh’: Engaging with the multiple voices of support groups for people living with rare dementia\u003c/p\u003e","fulltext":[{"header":"Introduction","content":"\u003cdiv id=\"Sec2\" class=\"Section2\"\u003e \u003ch2\u003eRare forms of dementia\u003c/h2\u003e \u003cp\u003eOver 55\u0026nbsp;million people are estimated to be living with dementia worldwide (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e), and the condition is associated with substantial economic and social costs for individuals, families and wider society (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). The leading cause of dementia \u0026ndash; affecting 60\u0026ndash;70% of people with it \u0026ndash; is Alzheimer\u0026rsquo;s disease, which predominantly impacts memory function and is usually diagnosed in those over the age of 65 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). However, there are rarer forms of dementia which are non-memory-led, for example those predominantly affecting visual and spatial processing (as in posterior cortical atrophy (PCA) and movement and stability of attention and alertness in Lewy Body Dementia (LBD)), speech and language abilities (as in the primary progressive aphasias (PPA), or personality and behaviour (as in behavioural variant frontotemporal dementia (bvFTD) (\u003cspan additionalcitationids=\"CR4\" citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). There are also rarer forms of dementia which can be directly inherited (as in familial Alzheimer\u0026rsquo;s disease (FAD) and familial frontotemporal dementia (fFTD)), and most of these rarer forms disproportionately affect those under the age of 65 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Rarer dementias are thought to account for \u0026sim;7% of all dementias (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) and \u0026sim;10\u0026ndash;20% of dementias in people under the age of 65 (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), though these are likely underestimates due to the difficulties in getting an accurate and timely diagnosis (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThese conditions bring with them unique and complex challenges including difficulties related to age of onset, such as employment and related financial implications, as well as the impact on existing family care commitments (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). There are also challenges related to the atypicality of symptoms and widespread lack of awareness of these among health and social care professionals, friends and family, and society more broadly (\u003cspan additionalcitationids=\"CR16\" citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). These include experiences of stigma, anxiety and frustration due to a lack of access to timely and appropriately tailored services (17;18\u0026ndash;20), increased stress and burden for carers (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e), and isolation due to limited access to peers with a shared experience (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eUsing poetry in healthcare research\u003c/h2\u003e \u003cp\u003eFrom healthcare and social science perspectives the use of poetry in dementia care research may seem like strange bedfellows, something that appears out of place and with low priority. Yet, over the past 20 years arts-based health research has increasingly taken an active role in dementia research alongside medical approaches that seek to cure or slow down the progress of dementia. In randomised controlled trials (e.g., 24) and other empirical studies (e.g., 25), and in qualitative research (e.g., 26), the arts have been used \u0026ldquo;to identify and describe, understand and interpret, represent and communicate social and individual experiences of health and illness across the lifespan\u0026rdquo; (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, p. 83). Ethological theories lend support to the evolutionary significance of the arts \u0026ldquo;and help to form a foundation to understand the biopsychosocial processes (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e) involved in arts participation\u0026rdquo; (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, p. 287). Noted anthropologist Ellen Dissanayake\u0026rsquo;s research (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) attributes the ethological importance of the arts to how they can create feelings of mutuality between people, facilitate a sense of belonging, alongside the processes of finding and making meaning.\u003c/p\u003e \u003cp\u003ePoetry is an artistic method (among many artistic methods) of nominating a personal (or shared) event or emotion to be appreciated by an audience that did not share that experience directly. The effect of vernacular words is heightened through techniques of, for example, rhythm, rhyme, repetition, metaphor, simile, and analogy, seeking to provide the reader or listener with insights into the poet\u0026rsquo;s experience. The idea that a poem is always more than the sum of its parts allows emergent connections to be made between ideas that would not be possible via another medium. Writing, reading and hearing poetry is an embodied and interpretive experience that can generate emotional and multisensory understandings (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e), whilst conveying discovery and surprise. Poetry, in casting off the syntactical rules of more typical prose forms, also manages to free itself from some of the limits imposed on language by those rules (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e). In short, poetry allows for the braiding and overlapping of multiple (and sometimes contradictory) emotional truths. We can see then how poetry as a research methodology might allow for an emancipatory relationship between speaking and truth, particularly when working with groups who might otherwise struggle to get their lived experience heard (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e). In order to incorporate the \u0026lsquo;raw words\u0026rsquo; of multiple participants into poems, the present study, as explained below, used an experienced poet to facilitate this process.\u003c/p\u003e \u003cp\u003ePoetry as a research method can be used to represent and reinterpret existing data (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e), to assemble field notes, and to collect data (31;35). Poetry, although distinctive from the more disimpassioned voice of usual academic discourse, allows data to be presented that has multiple meanings, is personally and inferentially constructed and allows the voice of multiple participants to be heard (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e), while also closely reflecting the lived experience of those impacted by rare dementia (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eResearch aims\u003c/h2\u003e \u003cp\u003eThe present study, influenced by research poetry protocols developed by Camic and colleagues (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e), used poetry as a way to represent experiences of support for people living with different rare dementias attending on-going, in-person support groups. With few exceptions, many people with young onset and rare forms of dementia have remained mostly hidden and underserved by health and social care systems in both wealthier and less wealthy countries (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e). The research presented in this study sought to better understand and examine, through co-constructed research poetry, how support groups provide support for PLwRD and care-partners with different types of rare dementia. A secondary aim was to interrogate the source material and completed poems using quantitative and qualitative analysis, to further develop research poetry as an arts-based health research methodology.\u003c/p\u003e \u003c/div\u003e"},{"header":"Methods","content":"\u003cp\u003eThis mixed-methods study involved soliciting words (source material), in order to create co-constructed poems, from PLwRD and care-partners who were participating in ongoing support groups. As an alternative to traditional qualitative research interviews, the poems created in this study were treated as data and analysed through a three-step analytic process involving linguistic analysis followed by thematic analysis, described below. An online survey was also sent to participants along with each group\u0026rsquo;s completed poems in written and audio-recorded formats. We were keenly aware that analysing poems using social and behavioural science methodologies might seem an anathema or contradiction to the purpose of poetry as an art form. For arts-based health research to be impactful and meaningful to multiple audiences, however, both the art output (poems) and resulting analysis (linguistic and thematic analyses) are presented.\u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eParticipants were recruited from eight support groups for people impacted by rarer forms of dementia and members of (blinded), an organisation in the London area representing seven different types of dementia (Table\u0026nbsp;1). Although we did not collect information about previous poetry experiences, a few participants voluntarily shared that they write and/or read poetry on a regular basis. Support group sessions occurred in accessible community settings and involved presentations from healthcare professionals on topics related to the group, facilitated discussions, informal peer-to-peer discussions and time to socially interact with peers and/or professionals (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e). Seven of the support groups were diagnosis-specific and one was a mixed rare dementia group. Sixty-one percent of the 290 members (N\u0026thinsp;=\u0026thinsp;84 (PLwRD), N\u0026thinsp;=\u0026thinsp;182 (care-partners), N\u0026thinsp;=\u0026thinsp;24 (people genetically at risk)) who were invited to participate took part (N\u0026thinsp;=\u0026thinsp;177). They ranged in age from early 20s to mid-70s (Table\u0026nbsp;2) and were approximately 55% female. Ethical approval was obtained from (blinded) university ethics panel (approval number: 8545/004). Participation was by verbal consent at the time of support group meetings and included the following information presented in writing two weeks before each group and repeated verbally on the day of the group: \u0026ldquo;(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) that by participating in the poetry creation exercise you would be providing consent for your contribution to be included in analysis of the poetry and any possible future publications, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) you will not be personally identifiable in any publication and, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) that your contributions will not be linked to you or data storage or processing purposes.\u0026rdquo;\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipation by type of rare dementia\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN \u003csup\u003ea/b\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eParticipation rate (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMixed Rare Dementia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14/14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e100\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePosterior Cortical Atrophy (PCA)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e60/32\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e53.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFamilial Alzheimer\u0026rsquo;s Disease (fAD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e30/20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e66.6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFamilial Frontotemporal Dementia (fFTD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11/6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e54.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLewy Body Dementia (LBD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e24/18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e75.0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFrontotemporal Dementia (FTD) [including behavioural-variant and semantic-variant types]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e56/32\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e57.1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrimary Progressive Aphasia (PPA)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e66/36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e54.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYoung Onset Alzheimer\u0026rsquo;s Disease (YOAD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e29/19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e65.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e290/177\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e61.03\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec7\" class=\"Section3\"\u003e \u003ch2\u003eN\u0026thinsp;=\u0026thinsp;\u003csup\u003ea\u003c/sup\u003einvited/ \u003csup\u003eb\u003c/sup\u003eparticipated\u003c/h2\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipation by age group\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge range\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNumber (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e20s\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e14 (5.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e30s\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e26 (9.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e40s\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e34 (13.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e50s\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e95 (36.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e60s\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e80 (30.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e70s\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e13 (4.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section3\"\u003e \u003ch2\u003eProcedure\u003c/h2\u003e \u003cp\u003eOur approach to creating poems was designed to allow people to contribute to a poem with a single word, a series of unconnected words, or a complete sentence. We wanted to increase the accessibility of participation for people who may have specific difficulties responding due to impairment (e.g., language, memory, visual) and/or may be intimidated by writing poetry.\u003c/p\u003e \u003cp\u003e Approximately two weeks before each group met, an invitation to participate, including information about the project and ethics approval details, was provided in each group\u0026rsquo;s newsletter. During the support group meeting a researcher also explained the project verbally and responded to questions. Participants were given a pen and sheet of paper with the prompts written in 14-point Arial font and asked to respond in writing to either prompt; prompts were also read aloud. Responses were folded for privacy and were collected at the lunch break in order to allow time for responding.\u003c/p\u003e \u003cp\u003eAs part of the protocol, the directions provided to participants in the newsletter and repeated at the meeting were as follows:\u003c/p\u003e \u003cp\u003e\u0026ldquo;Please write your words in any form you would like after one of the prompts. You can write one word, a complete sentence or simply any words you want to use. Since this is poetry in the making, please consider your emotions, images that come to mind, thoughts and experiences as you write.\u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eHow does this group support you as someone living with or living at risk of (type of dementia) or as a care-partner for someone with or living at risk of (type of dementia)?\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e[The second prompt was oriented for members new to this group:] How would you like the group to support you? What support do you need from this group?\u0026rdquo;\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eFor those people who had difficulty writing or with vision issues (N\u0026thinsp;=\u0026thinsp;3), a researcher recorded their responses and read it back to assure accuracy. Responses were anonymous and once collected were given to the facilitating poet. Using only verbatim responses the poet included words from all participants to form poems for each of the eight groups. Within two weeks completed poems were sent to all group members (including those who did not participate) along with a link to an online anonymous Qualtrics survey soliciting information about the process of collecting contributions (to those who participated) and reactions to the completed poems (for all members):\u003c/p\u003e \u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eWhat did you think and feel about the completed poem? Please be candid.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003e If you participated in writing the poem by sharing your words, what was your experience of writing the words that you did in a group setting? Was it easy, comfortable, difficult, enjoyable, challenging, helpful/unhelpful, silly, etc.? Could we have done anything differently to make it a more useful experience?\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eIn your opinion, do you think poetry writing workshop sessions, in-person or online, for people impacted by rarer forms of dementia might be helpful as a tool to help process your experiences? Please provide as much detail as you would like.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eDo you think that reading poems like this one, created by people affected by rarer dementias, would be useful for the general public and health/social care professionals to read, in order to increase awareness of rarer forms of dementia?\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eData analysis involved three steps. Firstly, we investigated how faithful the completed poems were to the source material (initial responses to the prompts). To do so, linguistic analysis and word count software (Linguistic Inquiry and Word Count-22 (LIWC-22)(\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e) was used to analyse language data (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). It was important to determine if the completed poems reflected the words drawn from the source material in order to feel confident that we could conduct a thematic analysis using the poems. Secondly, once this was established, a structured tabulated thematic analysis (ST-TA)(\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e) was used to examine themes from each poem and to compare codes and themes across poems, and thirdly, this was followed by examining relationships between themes (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). After each poem was sent to members, an online survey was conducted to gather free-text responses about their participation experiences. This data was also analysed thematically.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eLinguistic analysis\u003c/h2\u003e \u003cp\u003eThe source material and poems created from that material were compared in terms of total words, type/token ratio (total different words [types]/total words [tokens]), concreteness (the extent to which a word or concept evokes a (multi)sensory experience), age of acquisition (AoA; the age at which people learn a particular word), and contextual diversity (the number of contexts in which a word appears), plus their emotional content was examined using normative data for emotional valence (the pleasantness of a stimulus), arousal (the intensity of emotion provoked by a stimulus) and dominance (the degree of control exerted by a stimulus) (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e). Wilcoxon ranksum tests (for unmatched data, though noting the lack of independence for shared words) were used for comparisons of lexical variables.\u003c/p\u003e \u003cp\u003eThe poetry task was framed openly to encourage participation, and yielded written contributions of multiple sizes (e.g., word-level, phrase-level) and different levels of richness. These contributions were analysed using the LIWC-22 (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e) text analysis tool. LIWC\u0026rsquo;s core function is to compare words in an imputed dataset to each of its dictionaries and sub-dictionaries (\u0026gt;\u0026thinsp;12,000 words) and assign syntactic and semantic information. For example, \u0026ldquo;howled\u0026rdquo; would register in verbs, past tense, emotion, negative emotion, sadness, and more. The global category scores for a dataset then represent the percentage of items in the dataset which fit in this dictionary. Developed by researchers interested in social, clinical, health and cognitive psychology, LIWC is uniquely placed to inform on psychological and social states identifiable at word-level. Psychological work has harnessed LIWC for 20-plus years including work on trait and personality (\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e), social dominance (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e), group processes (\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e), and mental health research (\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eSeparate files were prepared for the source material and poems for each of the 8 participant groups. LIWC scores for these texts were acquired for the four standard LIWC summary variables \u0026ndash; analytic (the degree to which people use words that suggest formal, logical, and hierarchical thinking patterns), clout (the relative social status, confidence, or leadership that people display through their writing or talking), authentic (words which reflect people talking in an honest, spontaneous way, without self-regulating or filtering what they are saying) and tone (combining positive and negative words, with higher scores indicating positive emotional tone and scores below 50 indicating negative tone) \u0026ndash; plus more detailed affect and emotion counts (overall, positive, negative). Separate comparisons were conducted for non-corresponding words, i.e., the minority of words that appeared in the source material but not the poems, or in the poems but not the source material.\u003c/p\u003e \u003cp\u003eStructure within the source material and poems was considered further by generating LIWC-22 narrativity scores for staging, plot progression, and cognitive tension plus an overall measure. These scores reflect how closely any given text resembles \"standard\" structures used by storytellers across a range of different standard texts, with scores ranging from +\u0026thinsp;100 (perfectly aligned with the normative shapes) through 0 (no relation) to -100 (opposite of normative structures). Wilcoxon signed-rank tests were used to compare source and poem structures. An additional examination of structure and word order was also piloted with one community poem, exploring the extent to which contributed words were maintained in precise form and within/outside contributed phrases in the final poem.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eStructured tabular thematic analysis (ST-TA)\u003c/h2\u003e \u003cp\u003eThere are several approaches to thematic analysis used in the social and healthcare sciences (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e) with some adhering to a prescribed epistemological stance (\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e) while others take a more pragmatic approach (\u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e), which allows for increased analytic flexibility. Considering the present study used a mixed-methods approach that also involved many more participants than is usual in qualitative research, and the data is drawn from relatively brief texts, the structured tabular approach to thematic analysis was chosen (ST-TA) (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e). ST-TA partially draws upon Boyatizis\u0026rsquo; (\u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e) and Braun and Clarke\u0026rsquo;s (\u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e) approaches to thematic analysis whilst underpinned by a critical realist epistemology (\u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e) that seeks to balance reflective and positive-reductionist approaches. Robinson\u0026rsquo;s approach was also developed to analyse briefer texts than the more typical one-hour long interviews found in many qualitative studies. The Standards for Reporting Qualitative Research (\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e) guided the qualitative components of the study.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eIt was decidedly not our intention to subsume reading the poems with a formal analysis. We are aware that the poems themselves may portray deeper and more vivid meanings than can be identified analytically, and that is, we argue, one of the contributions of poetry and arts-based health research to portraying the human condition. However, putting these important considerations aside, this research sought to explore how research poetry might be used as a methodology to further our understanding of what support means for people impacted by rare dementia. The eight poems and source material created in this project can be found in supplemental file (S1). They are referenced in the linguistic analysis and thematic analysis below. The poems can, however, also be read independently of our analysis, which we encourage readers to do.\u003c/p\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eLinguistic analysis\u003c/h2\u003e \u003cp\u003eThe source material (N\u0026thinsp;=\u0026thinsp;1929 words) and words used in the finished poems (N\u0026thinsp;=\u0026thinsp;1807) showed a high degree of correspondence, with 65% of source words appearing at least once in the corresponding poem, and 89% of poem words being contributed in the source material. No significant differences were found in any of the linguistic variables examined, suggesting that overall, the poems were faithful (i.e., well matched) to the source material (see Table\u0026nbsp;3). In the analyses of non-corresponding words (see Figs.\u0026nbsp;1 and 2), the few source words that were not included in the poems tended to be words not classified as \u0026lsquo;authentic\u0026rsquo;, and where words with affect were added to the poems, they were slightly more likely to be positive than negative, though the number (%) of words added is very small (27 [5%]) and probably has little bearing.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eComparison of source material words to completed poems\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSource material\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePoems\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCorrespondence/comparison\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTotal words\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1929\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1807\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e65% (1253/1929) source words in poem\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e89% (1615/1807) poem words in source material\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTotal different words\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e663\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e587\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e84% (560/663) source words in poem\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e95% (560/587) poem words in source material\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eType/token ratio\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0.34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0.32\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eValence [Ns 659, 583]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0.59 (0.12)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0.59 (0.12)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ez = -0.41, p\u0026thinsp;=\u0026thinsp;0.69\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eArousal [Ns 659, 583]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0.38 (0.06)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0.38 (0.06)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ez = -0.40, p\u0026thinsp;=\u0026thinsp;0.69\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDominance [Ns 659, 583]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0.58 (0.08)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0.58 (0.08)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ez = -0.41, p\u0026thinsp;=\u0026thinsp;0.68\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eConcreteness [Ns 659, 583]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0.44 (0.16)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0.44 (0.16)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ez\u0026thinsp;=\u0026thinsp;0.18, p\u0026thinsp;=\u0026thinsp;0.85\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge of Acquisition [Ns 659, 583]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7.95 (2.44)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7.89 (2.37)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ez\u0026thinsp;=\u0026thinsp;0.31, p\u0026thinsp;=\u0026thinsp;0.75\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eContextual diversity [Ns 513, 452]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8.21 (1.95)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8.27 (1.90)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ez = -0.44, p\u0026thinsp;=\u0026thinsp;0.66\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cem\u003eType/token ratio\u0026thinsp;=\u0026thinsp;total different words (types)/total words (tokens). Mean (SD) ratings for emotional content of words assessed using normative data for emotional valence, arousal and dominance plus concreteness, age of acquisition (AoA) and log\u003c/em\u003e\u003csub\u003e\u003cem\u003e10\u003c/em\u003e\u003c/sub\u003e \u003cem\u003econtextual diversity (lgCD)\u003c/em\u003e (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eNarrativity scores for each of the source materials and poems are shown in Table\u0026nbsp;4. Although poems yielded numerically higher scores for each narrativity measure except cognitive tension, there were no significant differences on these measures.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eLIWC-22 narrative arc scores\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"9\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003eLIWC-22 Arc of narrative average score\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c5\" namest=\"c4\"\u003e \u003cp\u003eStaging\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c7\" namest=\"c6\"\u003e \u003cp\u003ePlot progression\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c9\" namest=\"c8\"\u003e \u003cp\u003eCognitive tension\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSource\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePoem\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSource\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePoem\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSource\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003ePoem\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eSource\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003ePoem\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup 1 mixed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8.39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e58.27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e61.89\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e69.85\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e7.93\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e77.57\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e-44.87\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e27.38\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup 2 PCA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-3.23\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e49.05\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e47.2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e83.68\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e-20.29\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e-1.54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e-36.58\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e65.02\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup 3 fAD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e20.47\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e20.74\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e41\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e44.31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e-26.82\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e39.57\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e47.24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e-21.65\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup 4 fFTD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21.64\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e-25.31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e67.63\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e-20.79\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e47.8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e-36.58\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e-50.52\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e-18.58\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup 5 LBD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-18.15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e-32.38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e-17.29\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e-19.98\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e1.98\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e-12.45\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e-39.12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e-64.71\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup 6 FTD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-39.47\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2.4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e-29.23\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e73.67\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e-42.03\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e-29.63\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e-47.14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e-36.84\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup 7 PPA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e27.54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e31.16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e43.32\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e71.51\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e7.53\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e-24.41\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e31.77\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e46.38\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup 8 YOAD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e40.14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e54.85\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e75.88\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e83.96\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e-19.54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e75.97\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e64.09\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e4.63\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eWilcoxon signed-rank test comparisons\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003e\u003cem\u003ez = -1.26, p\u0026thinsp;=\u0026thinsp;0.25\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c5\" namest=\"c4\"\u003e \u003cp\u003e\u003cem\u003ez = -1.40, p\u0026thinsp;=\u0026thinsp;0.20\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c7\" namest=\"c6\"\u003e \u003cp\u003e\u003cem\u003ez = -0.70, p\u0026thinsp;=\u0026thinsp;0.55\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c9\" namest=\"c8\"\u003e \u003cp\u003e\u003cem\u003ez = -0.56, p\u0026thinsp;=\u0026thinsp;0.64\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe manual examination of word order used poem 4 (fFTD; see S, p. 10\u0026ndash;11) as an example. Of the 58 individual words in this poem, 49 (84%) appeared exactly as in the source material, with the remaining 9 (16%) being adapted from source words (e.g., caring --\u0026gt; care). 50/58 (86%) of the individual words were drawn from phrase rather than single word source contributions. 37 words featured in the final poem as whole phrases or fragments of phrases. 33/37 (89%) of those words maintained the exact word order in which they appeared in the source material. At the contribution level, all 8/8 (100%) contributions yielded at least one word which featured in the final poem. Although contributions were not prioritised or ordered, the poem drew on each contribution in a non-sequential fashion, with the sequential order of individual poem words reflecting 26 sampling transitions throughout the poem.\u003c/p\u003e \u003cp\u003eThe results of the linguistic analysis provides confidence that co-constructed poems created by support group members and a facilitating poet remained faithful to the source material words provided by PLwRD and care-partners. These results allowed us to subsequently conduct a thematic analysis of the completed poems, reported in the next section.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eThematic analysis\u003c/h2\u003e \u003cp\u003eCoding and theme development was an iterative process. In order to assure trustworthiness of the analysis (\u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e), three researchers independently coded the poems and through discussion, sought \u0026ldquo;interanalyst agreement to form a working intersubjective consensus\u0026rdquo; (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, p. 197) rather than the statistical approach of interrater agreement. This more adaptable, albeit time-consuming method, allowed for deeper discussions and idea development. A flexible epistemological approach, critical realism (\u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e), which is also relevant for brief texts (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e) was used to guide coding and theme development. Poems were read several times before beginning coding. Initial coding identified 41 codes across all poems. Table\u0026nbsp;5 contains a list of codes, frequency of codes across poems and occurrence in specific poems. This information is presented to increase transparency and clarity about the coding process and follows recommendations by Robinson (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e) to present code frequencies as part of a structural approach to qualitative research. Codes \u0026lsquo;Strategies and Information\u0026rsquo;, \u0026lsquo;Not Being Alone\u0026rsquo;, \u0026lsquo;Part of a Community\u0026rsquo;, \u0026lsquo;Connecting with Peers\u0026rsquo;, \u0026rsquo;Beacon of Hope\u0026rsquo;, \u0026lsquo;Transcendence\u0026rsquo;, \u0026lsquo;Dynamic Sharing\u0026rsquo;, \u0026lsquo;Nurtured\u0026rsquo;, \u0026lsquo;Professional Input\u0026rsquo; \u0026lsquo;Empathy\u0026rsquo; and \u0026lsquo;Rocky Journey\u0026rsquo; had the highest frequency within individual poems and occurred in at least half the poems. Other codes were more closely identified with poems representing specific rare dementia groups (e.g., \u0026lsquo;Discovering\u0026rsquo; (FTD, PPA,YOAD), \u0026lsquo;Empowering\u0026rsquo; (fAD, FTD, PPA, YOAD), \u0026lsquo;Reassurance\u0026rsquo; (PCA, fAD), \u0026ldquo;What about the Future?\u0026rsquo; (PCA, fAD).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eInitial codes, frequency and associated poems\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCodes\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFrequency across all poems\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eOccurrence in number of different poems\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eName of poem associated with code\u003csup\u003e1\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBeacon of hope\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,2,3,5,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBrings people to the group\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,5,6,7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCaring\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCommunication\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5,7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eConnecting with peers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,2,3,4,5,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDarkness\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDignity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDiscovering\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDynamic sharing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3,4,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEffectual actions\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmpathy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4,5,6,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmpowering\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eExcluded\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGives me control\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHappens from being in the group\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5,6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHope\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,3,6,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHumour\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIncluded\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIncreasing understanding\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3,6,7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInspiration\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6,7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMentoring\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3,6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot always relevant\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot being alone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,2,3,4,5,6,7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNurtured\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2,3,6,7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOverwhelmed \u0026amp; heart-breaking\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePart of a community\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,2,3,5,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePlace of refuge\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,5,6,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePossibilities\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3,7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProfessional input\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2,3,5,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReassurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2,3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRecognition\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3,5,6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRoadmaps\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRocky journey\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,2,6,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSafety\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSelf-expression\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSharing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,2,6,7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStrategies \u0026amp; information\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,2,3,4,5,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSupportive/support\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3,4,5,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTranscendence\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,3,5,6,7,8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUncertainty\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWhat about the future?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2,3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003csup\u003e \u003cem\u003e1\u003c/em\u003e \u003c/sup\u003e \u003cem\u003e1\u0026thinsp;=\u0026thinsp;A Glass Half Full (mixed rare dementia), 2\u0026thinsp;=\u0026thinsp;You are Not Alone (PCA), 3\u0026thinsp;=\u0026thinsp;Instead of Alone (fAD), 4\u0026thinsp;=\u0026thinsp;Reminder (fFTD), 5\u0026thinsp;=\u0026thinsp;More Than (LBD), 6\u0026thinsp;=\u0026thinsp;I Honestly Didn\u0026rsquo;t know (FTD), 7\u0026thinsp;=\u0026thinsp;We Help Each Other (PPA), 8\u0026thinsp;=\u0026thinsp;A Beacon in the Fog (YOAD)\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eThemes and narrative synthesis from individual poems\u003c/h2\u003e \u003cp\u003eTable\u0026nbsp;6 presents 15 primary themes from individual poems with accompanying narrative synthesis (\u003cspan citationid=\"CR65\" class=\"CitationRef\"\u003e65\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e). The narrative synthesis is a brief snapshot of the identified themes and their relationship to each other within individual poems and was influenced by Robinson\u0026rsquo;s (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e) use of relational analysis as an additional technique to aid data integration. As Table\u0026nbsp;6 indicates, some themes were prominent in multiple groups whilst others were not. Themes were developed by carefully assessing the codes in Table\u0026nbsp;5. We looked for commonalities and differences between codes and made decisions about theme development aided, in part, by the frequencies of codes presented in Table\u0026nbsp;5. It is important to note, however, that whilst there is a good deal of thematic overlap between poems, the nuanced relationships between themes also indicates subtle and not so subtle variations and differences as seen in this excerpt from the poem, A Glass Half Full:\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eA glass half full\u003c/h2\u003e \u003cdiv id=\"Sec17\" class=\"Section3\"\u003e \u003ch2\u003eLaughter in a dark space\u003c/h2\u003e \u003cdiv id=\"Sec18\" class=\"Section4\"\u003e \u003ch2\u003eHappy amongst friends\u003c/h2\u003e \u003cp\u003e \u003cem\u003eShare the difficult moments\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eSafety in numbers\u003c/h2\u003e \u003cdiv id=\"Sec20\" class=\"Section3\"\u003e \u003ch2\u003eA shared experience\u003c/h2\u003e \u003cdiv id=\"Sec21\" class=\"Section4\"\u003e \u003ch2\u003eAn answering shout through the fog\u003c/h2\u003e \u003cp\u003e \u003cem\u003eTogetherness in a time of feeling alone\u003c/em\u003e \u003c/p\u003e \u003cp\u003eFor example, although the code \u0026lsquo;Strategies and Information\u0026rsquo; was identified in all 8 poems, after further refinement (by integrating codes \u0026lsquo;Strategies\u0026rsquo;, \u0026lsquo;Strategies and Information\u0026rsquo;, \u0026lsquo;Effectual Actions\u0026rsquo;, \u0026lsquo;Increasing Understanding\u0026rsquo; and \u0026lsquo;Roadmaps\u0026rsquo;) it was identified as a theme that was prominent in 4 poems (mixed rare dementia, PCA, FTD, LBD). Likewise, as another example, the codes \u0026ldquo;Safety, \u0026lsquo;Nurtured\u0026rsquo; and \u0026lsquo;Place of Refuge\u0026rsquo; shared similarities and analytically were combined to form the higher order theme, Place of Refuge, identified in 7 poems. This is not to suggest that these themes are absent in other group poems, but they hold a more prominent position in these examples. An excerpt from the poem, I Honestly Didn\u0026rsquo;t Know:\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003eSignposts the way along a rocky journey\u003c/h2\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003eSomeone professional to talk with\u003c/h2\u003e \u003cdiv id=\"Sec24\" class=\"Section4\"\u003e \u003ch2\u003ePeople in the same situation help so much\u003c/h2\u003e \u003cp\u003e \u003cem\u003eKnowing I am not alone\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec25\" class=\"Section2\"\u003e \u003ch2\u003eAn open door with a warm welcome\u003c/h2\u003e \u003cdiv id=\"Sec26\" class=\"Section3\"\u003e \u003ch2\u003eAt a time when it felt all other doors had slammed shut\u003c/h2\u003e \u003cdiv id=\"Sec27\" class=\"Section4\"\u003e \u003ch2\u003eThe strength to carry on\u003c/h2\u003e \u003cp\u003e \u003cem\u003eHelp weathering the storm\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec28\" class=\"Section2\"\u003e \u003ch2\u003eA lantern of light\u003c/h2\u003e \u003cdiv id=\"Sec29\" class=\"Section3\"\u003e \u003ch2\u003ein what I know will be darkening days ahead\u003c/h2\u003e \u003cdiv id=\"Sec30\" class=\"Section4\"\u003e \u003ch2\u003eTo talk to people who understand\u003c/h2\u003e \u003cp\u003e \u003cem\u003eA chance to share, laugh, cry and breathe\u003c/em\u003e \u003c/p\u003e \u003cp\u003eIn another example, the complex theme 'Dynamic Sharing\u0026rsquo; is taken as an \u003cem\u003ein vivo\u003c/em\u003e term named by a participant. It integrates the codes \u0026lsquo;Caring\u0026rsquo;, \u0026lsquo;Discovering\u0026rsquo;, \u0026lsquo;Dynamic Sharing\u0026rsquo;, and \u0026lsquo;Sharing\u0026rsquo; and is defined as an exchange of different types of support and a flexibility in responding to different levels of need among group members. Dynamic sharing is an action and is neither a linear nor a top-down approach but is seen as interactional and relational and occurring between PLwRD, care-partners and professionals. What is shared involves a range of phenomena and might include emotional support, humour, suggestions about financial help, personal stories and information about recent research. An excerpt from the poem, A Beacon in the Fog:\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e\n\u003ch3\u003eA beacon of hope\u003c/h3\u003e\n\u003cdiv id=\"Sec32\" class=\"Section2\"\u003e \u003ch2\u003eCounting to ten\u003c/h2\u003e \u003cdiv id=\"Sec33\" class=\"Section3\"\u003e \u003ch2\u003eWithout feeling exhausted\u003c/h2\u003e \u003cdiv id=\"Sec34\" class=\"Section4\"\u003e \u003ch2\u003eLancing the pain\u003c/h2\u003e \u003cp\u003e \u003cem\u003eTo find the joy still below\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eHelp at last\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eWorld-class information\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eThe long night\u0026rsquo;s journey into day\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eUnderstanding what I am dealing with\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eLike an embracing warm hug\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab6\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 6\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThemes from individual poems and accompanying narrative synthesis\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePoem Title\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDementia Group\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThemes\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNarrative Synthesis\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eA Glass Half Full\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMixed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eStrategies and Information\u003c/p\u003e \u003cp\u003eDynamic Sharing\u003c/p\u003e \u003cp\u003eA Place of Refuge\u003c/p\u003e \u003cp\u003ePart of a Community\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eFor this group with members living with different rare dementias, the poem highlights the necessity to share a dark space and a safe space as two aspects of what support means. This was captured by \u0026ldquo;heartbreak\u0026rdquo; plus humour, hope and happiness, which is poignantly acknowledged by the phrase, \u0026ldquo;A torch, a rope, a belly laugh\u0026rdquo;. The need to express pain and share hope for the future, as aspects of support, is seen as a time to connect with self (the dark, how best to live with dementia) and also connect with others (the hope, the relief). This space is, critically, relational where connecting with peers has helped to form a community.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eYou Are Not Alone\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePosterior cortical atrophy (PCA)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eStrategies and Information\u003c/p\u003e \u003cp\u003ePart of a Community\u003c/p\u003e \u003cp\u003eBeacon of Hope\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eThis poem conveys the strong need to obtain for oneself, and to provide to others, strategies and information about the social, medical and support needs of PCA. This occurs within the vital context of being part of a community. The group is experienced as a lifeline of safety whilst\u0026nbsp; also navigating the darkness of uncertainty, \u0026ldquo;a helping hand out of the wilderness\u0026rdquo;.\u0026nbsp;Importantly, it is a relational community space (\u0026ldquo;like-minded people\u0026rsquo;, \u0026ldquo;getting to know others\u0026rdquo;, \u0026ldquo;new friends for life\u0026rdquo;) that involves giving to and receiving from others \u0026ldquo;through the good days\u0026rdquo; and \u0026ldquo;through the bad days\u0026rdquo;, possibly like darkness and hope as both sides of a coin.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eInstead of Alone\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFamilial Alzheimer\u0026rsquo;s disease (fAD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePart of a Community\u003c/p\u003e \u003cp\u003eWhat About the Future?\u003c/p\u003e \u003cp\u003eNot Being Alone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eThere is an intimacy in these words that are slightly different than other poems through the physical expression (e.g., \u0026ldquo;a hug in the dark\u0026rdquo;; \u0026ldquo;it feels like wings are wrapped around me\u0026rdquo;). \u0026ldquo;I feel like I am in a room with people instead of alone\u0026rdquo; and \u0026ldquo;Part of a wonderful tribe\u0026rdquo; describes the sense of being connected with others in the group and part of a community and not an intervention. More reference, as might be anticipated due to the familial and inherited aspects of this condition, to the future was seen in this poem with respect to treatment, research and worries about children.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eReminder\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFamilial fronto-temporal dementia (fFTD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eUnconditionality of Support\u003c/p\u003e \u003cp\u003eDynamic Sharing\u003c/p\u003e \u003cp\u003eNot Being Alone\u003c/p\u003e \u003cp\u003eEmpathy\u003c/p\u003e \u003cp\u003ePart of a Community\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNot being isolated or alone, whilst perhaps a descriptive state, was powerfully felt in this poem. Terms not seen in other poems, \u0026ldquo;unconditionality\u0026rdquo; and \u0026ldquo;unconditional\u0026rdquo;, convey the importance of empathic caring for others who experience fFTD.\u0026nbsp;Being part of a community that understands and cares for others through personal connections, strategies and empathy as part of dynamic caring, which alone with unconditionality of support appear to be the overarching themes in this poem.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eMore Than\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLewy body dementia (LBD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eA Beacon of Hope\u003c/p\u003e \u003cp\u003eTranscendence\u003c/p\u003e \u003cp\u003eWhat About the Future?\u003c/p\u003e \u003cp\u003eStrategies \u0026amp; Information\u003c/p\u003e \u003cp\u003eConnecting with Peers\u003c/p\u003e \u003cp\u003eProfessional Input\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eThe life turbulence that brings people to this support group includes being scared, feeling alone, a tremendous uncertainty about the future and making decisions about \u0026ldquo;Switzerland service\u0026rdquo;, a reference to assisted dying that is not yet legal in the United Kingdom. Together with emotional needs, people attend to pursue information and answers to questions about Lewy body dementia that have often been elusive or not available from non-specialist healthcare professionals. These questions were met by support that included recognition, hands-on strategies offered by group members during the experience of connecting with each other, and a sense of transcendence of being \u0026ldquo;more than my diagnosis\u0026rdquo;.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eI Honestly Didn\u0026rsquo;t Know\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFrontotemporal dementia (FTD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eA Rocky Journey\u003c/p\u003e \u003cp\u003eA Place of Refuge\u003c/p\u003e \u003cp\u003eDynamic Sharing\u003c/p\u003e \u003cp\u003eProfessional Input\u003c/p\u003e \u003cp\u003eEmpathy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eThe poem points to a rocky journey and the impact on relationships that FTD can have.\u0026nbsp;The group as a \u0026ldquo;mutual ground\u0026rdquo; is seen as a place of refuge and a \u0026ldquo;loving bridge\u0026rdquo; to share how others have coped with FTD. Dynamic sharing involves members helping each other to obtain guidance, develop knowledge, gain awareness and feel strong emotional support. This empowering support helps to centre and inspire, \u0026ldquo;to keep me going\u0026rdquo; through anticipated dark days ahead and \u0026ldquo;weathering the storm\u0026rdquo; of uncertainty and isolation. Whilst support from professionals is positively acknowledged, the peer support from group members is repeatedly highlighted. Members feel recognition and empathy from and towards each other.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eWe Help Each Other\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePrimary progressive aphasia (PPA)\u0026nbsp;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDynamic Sharing\u003c/p\u003e \u003cp\u003ePart of a Community\u003c/p\u003e \u003cp\u003eExclusion, Frustration and Disappointment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBeing part of a larger, supportive and inspiring community features vibrantly in this poem. The sense that someone is always there who can provide comfort, inspiration and humour helps to balance out the roughness of the \u0026ldquo;tsunami\u0026rdquo; that living with PPA can entail. The transcendence of \u0026ldquo;A hot air balloon that can take me to better places\u0026rdquo; through \u0026ldquo;information, knowledge, kindness, reassurance\u0026rdquo; is part of dynamic sharing and is a powerful component of the group. A decrease in verbal communication abilities is one of the symptoms of more advanced PPA yet \u0026ldquo;poetry\u0026rdquo; which \u0026ldquo;speaks my music even when I cannot\u0026rdquo;, was seen as an empowering and a less difficult tool for self-expression and one that allows participation in a community. For some, however, frustration and disappointment was experienced, as was a sense of being excluded. This was an important reminder for us of communication differences, \u0026ldquo;Thoughts hard to align'' need to be continually addressed, and that support is not necessarily immediate, \u0026ldquo;So far it doesn\u0026rsquo;t. But possibilities there.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eA Beacon in the Fog\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYoung onset Alzheimer\u0026rsquo;s disease (YOAD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eEffectual Actions\u003c/p\u003e \u003cp\u003eDynamic Sharing\u003c/p\u003e \u003cp\u003eA Place of Refuge\u003c/p\u003e \u003cp\u003ePart of a\u003c/p\u003e \u003cp\u003eCommunity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBy providing opportunities for sharing one\u0026rsquo;s lived experience, together with professional expertise within an emotionally rich and empathic environment, the group offers refuge from the uncertainty and general lack of information surrounding young onset Alzheimer\u0026rsquo;s disease. The group also offers effectual actions that help to mitigate uncertainty. As a perceived lifeline in times of uncertainty, the support provided by the group is experienced as being dynamic in that it emboldens members and attending professionals to connect with each other through shared stories, questioning and offering insights. These experiences help to navigate a complicated personal and healthcare landscape, cutting through deep uncertainty, dissipating fear and providing a vision for the future.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cb\u003eRelationships between themes across poems\u003c/b\u003e \u003c/p\u003e \u003cp\u003eIn addition to identifying themes pertinent to individual poems we were also interested in understanding the relationships between key overarching themes across the corpus of all eight poems (Table\u0026nbsp;7). This involved actively exploring \u0026ldquo;whether a consensus, synthesis or unity can be found within the plurality of viewpoints\u0026rdquo; (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, p. 195) voiced by our diverse group of participants. To do this we re-read the poems as a corpus of work, re-examined coding, themes and relations between themes across the poems rather than only within a poem. As stated previously, Robinson (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e) suggests articulating key relational forms to help explore the possible relationships between analytical themes. As a reminder to readers, our prompting question to participants was, How does this group support you? The relational statements in Table\u0026nbsp;7 draw on six different relational forms in an attempt to develop a deeper understanding about the process of support groups for people impacted by rare dementia.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab7\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 7\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSummary of key relational forms, thematic elements and relational statements\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eKey relational form\u003c/p\u003e \u003cp\u003e(\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e, p. 201\u0026ndash;205)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThematic elements\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eRelational statement\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eComparative relations\u003c/em\u003e\u003c/p\u003e \u003cp\u003eComparative relations are those that link two or more themes by highlighting a similarity or difference between them (\u003cspan citationid=\"CR67\" class=\"CitationRef\"\u003e67\u003c/span\u003e).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRocky Journey\u003c/p\u003e \u003cp\u003eA Place of Refuge\u003c/p\u003e \u003cp\u003eNot Being Alone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eOn the often long and Rocky Journey (e.g., \u0026ldquo;it\u0026rsquo;s rough, it\u0026rsquo;s tough\u0026rdquo;, \u0026ldquo;resisting help. \u0026ldquo;Challenging\u0026rdquo;. \u0026ldquo;Persuade\u0026rdquo;) from first worrisome symptoms, to obtaining a diagnosis, to finding support, the groups provide a personal safe haven that softens the sense of being alone and isolated (e.g., \u0026ldquo;In what I know will be darkening days ahead\u0026rdquo;). Even with support, it is not as if the journey does not remain difficult and challenging, but the dreaded sense of isolation is lessened (e.g., \u0026ldquo;I feel like I am in a room with people instead of alone\u0026rdquo;, \u0026ldquo;I am not alone\u0026rdquo;, \u0026ldquo;reduces the sense of that feeling of being unknown.\u0026rdquo;).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eSemiotic relations\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u0026ldquo;One theme signifies or symbolises one or more themes. Symbols have a visual or sensory resemblance to which it symbolises, while a sign has no physical resemblance to that which it signifies\u0026rdquo; (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e, p. 2011)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePart of a Community\u003c/p\u003e \u003cp\u003eConnecting with Peers\u003c/p\u003e \u003cp\u003eBeacon of Hope\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eBeing part of a community (e.g., \u0026ldquo;I\u0026rsquo;ve found new friends for life\u0026rdquo;, \u0026ldquo;share the difficult moments\u0026rdquo;, \u0026ldquo;being around people who understand\u0026rdquo;), is a sign that meaningful connections are occurring between group members. These connections with peers (e.g., \u0026ldquo;Provides some sense of reason\u0026rdquo;, \u0026ldquo;Friends. Relief. Mutual support.\u0026rdquo;, \u0026ldquo;A torch, a rope, a belly laugh\u0026rdquo;) are symbols that \u0026ldquo;provides a vision for the future\u0026rdquo;, \u0026ldquo;a light of what might be possible\u0026rdquo;, \u0026ldquo;an answering shout through the fog\u0026rdquo;.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eEvocative relations\u003c/em\u003e\u003c/p\u003e \u003cp\u003eLinking one theme to another using a metaphor or simile (\u003cspan citationid=\"CR68\" class=\"CitationRef\"\u003e68\u003c/span\u003e). \u0026ldquo;Metaphors and similes imply the nonliteral equivalence of different phenomena rather than literal linkage of the comparative relation\u0026rdquo; (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e, p. 202)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhat about the Future?\u003c/p\u003e \u003cp\u003eTranscendence\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThe certainty of uncertainty is constantly present for many people with rare dementia (e.g., \u0026ldquo;What do I discover?\u0026rdquo;, \u0026ldquo;Is life over?\u0026rdquo;) and feelings of being \u0026ldquo;Excluded\u0026rdquo;, \u0026ldquo;Disappointed\u0026rdquo; and \u0026ldquo;Frustrated\u0026rdquo; are not unusual. Yet these very present life-impacting uncertainties can produce remarkable responses through group support (e.g., \u0026ldquo;A gift of independence, a way through\u0026rdquo;, \u0026ldquo;A normalisation of this new abnormal world\u0026rdquo;). A tremendous loss can be transcended (e.g., \u0026ldquo;Here the gift I had, which has been taken from me. Can now be turned to poetry. A light in the darkness.\u0026rdquo;)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eContingency relations\u003c/em\u003e\u003c/p\u003e \u003cp\u003eA likely or necessary condition for a phenomenon to occur.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eA Rocky Journey\u0026rarr;\u003c/p\u003e \u003cp\u003eA Place of Refuge\u003c/p\u003e \u003cp\u003ePart of a Community\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThe support groups provide refuge (e.g., \u0026ldquo;An open door with a warm welcome\u0026rdquo;, \u0026ldquo;Centring, keep me going\u0026rdquo;, \"Understanding by a look\u0026rdquo;) from the many challenges of living with rare dementia (e.g., \u0026ldquo;What about my kids?\u0026rdquo;, \u0026ldquo;What might we come up against?\u0026rdquo;, \u0026ldquo;Is life over?\u0026rdquo;). Although it may appear counterintuitive, the tremendous uncertainty of the journey creates the need for refuge. Refuge, however, does not necessarily imply a community. A place of refuge within the context of rare dementia, is a precursor to being part of something larger (e.g., \u0026ldquo;The group is like a family\u0026rdquo;, \u0026ldquo;Friends, relief, mutual support\u0026rdquo;, \u0026ldquo;The group is there for you\u0026rdquo;).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eReciprocal relations\u003c/em\u003e\u003c/p\u003e \u003cp\u003eBi-directional forms of influence within social interactions.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eA Place of Refuge\u003c/p\u003e \u003cp\u003eDynamic Sharing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling the \u0026ldquo;Warmth. Understanding. Support\u0026rdquo;, \u0026ldquo;Empowerment\u0026rdquo;, \u0026ldquo;Confidence\u0026rdquo; of a place of refuge is influenced by, and also influences, multiple forms and types of sharing (e.g., \u0026ldquo;Sharing practical ideas and opportunities\u0026rdquo;, \u0026ldquo;The group reminds, provides, offers support, help and care\u0026rdquo;, \u0026ldquo;There are experts available to answer questions\u0026rdquo;, \u0026ldquo;Connecting the dots even when I cannot see them\u0026rdquo;).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eConceptual part-whole relations\u003c/em\u003e\u003c/p\u003e \u003cp\u003eMultiple lower-order themes are linked to an overarching, higher order conceptual theme.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eA Community, Not an Intervention\u003c/p\u003e \u003cp\u003e~Dynamic Sharing\u003c/p\u003e \u003cp\u003e~Strategies and Information\u003c/p\u003e \u003cp\u003e~Part of a Community\u003c/p\u003e \u003cp\u003e~Connecting with Peers\u003c/p\u003e \u003cp\u003e~Professional Input\u003c/p\u003e \u003cp\u003e~Transcendence\u003c/p\u003e \u003cp\u003e~Effectual Actions\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eAlthough the members of the support groups seek strategies, information and help from each other and professionals that attend, the relationships between professionals and PLwRD and care-partners are reciprocal, interactive and relational. Professionals are not described as providing an intervention, which is more typically associated with their role. Connecting with Peers (e.g., \u0026ldquo;To hear stories of other people\u0026rdquo;, \u0026ldquo;That sense of connection-well needed\u0026rdquo;, \u0026ldquo;I loved meeting people like me\u0026rdquo;) is a vital component of support and involves physical and emotional interaction. PLwRD and care-partners along with professionals, contribute to the group through what we have identified as Dynamic Sharing (e.g., \u0026ldquo;Through laughter and understanding\u0026rdquo;, \u0026ldquo;Information of available services\u0026rdquo;, \u0026ldquo;Translating negative into optimism\u0026rdquo;, \u0026ldquo;New research\u0026rdquo;). The support felt from the groups as a community provides a sense of self Transcendence (e.g., \u0026ldquo;It\u0026rsquo;s like a lily pad and a frog. Everyday I jump on another pad\u0026rdquo;, \u0026ldquo;Dispersing the fog\", \"A hot air balloon taking me to different places\u0026rdquo;), Effectual Actions (e.g., \u0026ldquo;Dispelling fear\u0026rdquo;, \u0026ldquo;Lancing the pain\u0026rdquo;), Connecting with Peers (e.g., \u0026ldquo;I loved meeting people like me\u0026rdquo;, \u0026ldquo;Caring for others\u0026rdquo;).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThis phase of the analysis also identified an overarching or meta-theme, A Community, Not an Intervention. Support groups are experienced not as a clinical service, but as an \u0026lsquo;umbrella\u0026rsquo; that involves reciprocal, interactive and relational components and resources. Interventions are constructed medical and psychological processes and procedures that healthcare professionals \u0026lsquo;do\u0026rsquo; to/for patients, and there are circumstances and situations where interventions are necessary and helpful. The poetry written in the present study conveys something quite different however. Support is conceptually framed through taking place in a community that is strongly relational and contains multiple elements or themes. These include Dynamic Sharing, Strategies and Information, Part of a Community, Connecting with Peers, Professional Input, Transcendence and Effectual Actions. An underlying thread involves active involvement of members sharing information and offering psychological and social support with each other in the context of a non-hierarchical environment. People with lived experience along with professionals form the community, an important distinction from only peer-led support groups, groups facilitated by a professional or services offered by healthcare organisations.\u003c/p\u003e \u003cp\u003e \u003cb\u003eSurvey feedback\u003c/b\u003e \u003c/p\u003e \u003cp\u003eEighteen people completed surveys (11 care-partners, 7 PLwRD). Four (all care-partners) did not participate in contributing to the poems. Although fewer than we had hoped, responses provided useful information for future research and practice. However, having so few responses (11%), we chose only to do a descriptive analysis (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e). Complete responses to each question and the analysis are found in Supplemental file S2.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe 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 \u0026ldquo;Poems speak of the mortal condition\u0026hellip;about the tragic and glorious issues of our lives\u0026rdquo; (69, p. ix) in a way quite different from traditional research reports. Echoing Anglo-American poet W.H. Auden (\u003cspan citationid=\"CR70\" class=\"CitationRef\"\u003e70\u003c/span\u003e, p. 60), \"Poetry can do a hundred and one things, delight, sadden, disturb, amuse, instruct\u0026ndash;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.\u003c/p\u003e \u003cp\u003eThe 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 (\u003cspan citationid=\"CR70\" class=\"CitationRef\"\u003e70\u003c/span\u003e), to provide educational opportunities for healthcare professionals and students in training unfamiliar with rare dementia (\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e), and as a reflective tool within support groups (\u003cspan citationid=\"CR72\" class=\"CitationRef\"\u003e72\u003c/span\u003e) and by medical practitioners and other learners (\u003cspan citationid=\"CR73\" class=\"CitationRef\"\u003e73\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR74\" class=\"CitationRef\"\u003e74\u003c/span\u003e). 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.\u003c/p\u003e \u003cp\u003e \u003cb\u003eMethodological and theoretical considerations\u003c/b\u003e \u003c/p\u003e \u003cp\u003ePoetry 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\u0026ndash;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 (\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e), 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.\u003c/p\u003e \u003cp\u003eThe 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\u0026rsquo;s lived experience, rather than participants\u0026rsquo; words being extracted from lengthier research interview transcripts or from clinical records (e.g., poetic transcription and \u0026lsquo;found poetry\u0026rsquo;, 77\u0026ndash;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.\u003c/p\u003e \u003cp\u003eThe 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 \u0026ldquo;felt right\u0026rdquo;. For example, from the poem, A Glass Half Full (Supplemental file S1, p. 1\u0026ndash;3), in explaining the poetic process, the poet used \u0026ldquo;six \u0026lsquo;painful\u0026rsquo; lines as a sort of responsive chorus\u0026rdquo; in order give \u0026ldquo;a sense of hope and determination, as well as insights into shared experiences of support.\u0026rdquo; Supplemental file S1 also contains a description of the poet\u0026rsquo;s decision-making process in relation to each poem.\u003c/p\u003e \u003cp\u003eAdditionally, 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 \u0026ldquo;collective assembly\u0026rdquo;, described as psychological involvement in social experiences that provide a connection to others in a group (\u003cspan citationid=\"CR79\" class=\"CitationRef\"\u003e79\u003c/span\u003e) 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 (\u003cspan citationid=\"CR80\" class=\"CitationRef\"\u003e80\u003c/span\u003e) and attending cultural and sporting events (\u003cspan citationid=\"CR79\" class=\"CitationRef\"\u003e79\u003c/span\u003e), 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 (\u003cspan citationid=\"CR81\" class=\"CitationRef\"\u003e81\u003c/span\u003e) and contribute to the social health of members (\u003cspan citationid=\"CR82\" class=\"CitationRef\"\u003e82\u003c/span\u003e). The groups were seen to provide members with a sense of meaning, purpose and belonging that contribute to an individual\u0026rsquo;s positive sense of social identity through, for example, creating feelings of \u0026ldquo;warmth\u0026rdquo;, \u0026ldquo;understanding\u0026rdquo;, \u0026ldquo;support\u0026rdquo;, \u0026ldquo;empowerment\u0026rdquo;, \u0026ldquo;sharing difficult moments\u0026rdquo;, and \u0026ldquo;being around people who understand\u0026rdquo;. Positive social identity (\u003cspan citationid=\"CR83\" class=\"CitationRef\"\u003e83\u003c/span\u003e, p .31) is the \u0026ldquo;knowledge that [we] belong to certain social groups together with some emotional and value significance to [us] of this group membership\u0026rdquo;, and is particularly important for people from marginalised groups where an adverse health condition is unknown, intractable or untreatable (\u003cspan citationid=\"CR81\" class=\"CitationRef\"\u003e81\u003c/span\u003e). Supporting social relations that are \u0026ldquo;secure, safe, stable and felt to be legitimate\u0026rdquo; (e.g., Not Being Alone, A Place of Refuge, Connecting with Peers) \u0026ldquo;encourages social creativity\u0026hellip; by rejecting prevailing negative stereotypes and labels\u0026hellip; seeking to replace them with more positive ones\u0026rdquo; (e.g. Effectual Actions, Transcendence, A Community Not an Intervention) (\u003cspan citationid=\"CR81\" class=\"CitationRef\"\u003e81\u003c/span\u003e, p. 6). Although Taylor (\u003cspan citationid=\"CR84\" class=\"CitationRef\"\u003e84\u003c/span\u003e, p. 21) succinctly describes social identity as \u0026ldquo;...the cognitive mechanism that makes group behaviour possible\u0026rdquo;, emotional and behavioural components were also discovered to be highly salient for our participants.\u003c/p\u003e \u003cp\u003eThe 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 (\u003cspan citationid=\"CR85\" class=\"CitationRef\"\u003e85\u003c/span\u003e). 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 \u0026ldquo;attention to their needs of love, comfort, attachment, involvement, identity and meaningful occupation\u0026rdquo; (\u003cspan citationid=\"CR82\" class=\"CitationRef\"\u003e82\u003c/span\u003e, p. 702) and is a counterbalance to the more commonly held deficiency narrative about disabilities (\u003cspan citationid=\"CR86\" class=\"CitationRef\"\u003e86\u003c/span\u003e) to one of \u0026ldquo;active citizenship\u0026rdquo; characterised by new networks to support being a social citizen (\u003cspan citationid=\"CR87\" class=\"CitationRef\"\u003e87\u003c/span\u003e, p. 203). The overarching umbrella theme, A Community, Not an Intervention (Table\u0026nbsp;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 (\u003cspan citationid=\"CR88\" class=\"CitationRef\"\u003e88\u003c/span\u003e). 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.\u003c/p\u003e \u003cp\u003ePeople with a risk factor, cluster of symptoms or a known diagnosis is a biological, not social group (\u003cspan citationid=\"CR89\" class=\"CitationRef\"\u003e89\u003c/span\u003e). 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 (\u003cspan citationid=\"CR90\" class=\"CitationRef\"\u003e90\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR91\" class=\"CitationRef\"\u003e91\u003c/span\u003e) 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 (\u003cspan citationid=\"CR92\" class=\"CitationRef\"\u003e92\u003c/span\u003e), and few situated structures of support, \u0026ldquo;new social spaces for PLwRD and care-partners\u0026rsquo; support are being cultivated\u0026rdquo; (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, 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 (\u003cspan citationid=\"CR93\" class=\"CitationRef\"\u003e93\u003c/span\u003e). According to Bradley (\u003cspan citationid=\"CR93\" class=\"CitationRef\"\u003e93\u003c/span\u003e, p. 552), \u0026ldquo;circular looping effects of biosociality and biosolidarity demonstrate the way community activism and biosociality reproduce each other\u0026rdquo;. Poetry co-created by biosocial group members, as occurred in the present study, has the potential to contribute to a group\u0026rsquo;s solidarity and this solidarity, in turn, strengthen social relations and social identity.\u003c/p\u003e \u003cp\u003e \u003cb\u003eStrengths and limitations\u003c/b\u003e \u003c/p\u003e \u003cp\u003eA 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 (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e) 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.\u003c/p\u003e \u003cp\u003eA 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\u0026ndash;15 or so people; exploring length of data and collection formats can serve to strengthen and broaden qualitative approaches to research (\u003cspan citationid=\"CR94\" class=\"CitationRef\"\u003e94\u003c/span\u003e). A further strength of the study was the facilitating poet\u0026rsquo;s use of only participants\u0026rsquo; 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.\u003c/p\u003e \u003cp\u003eAs 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.\u003c/p\u003e \u003cp\u003e \u003cb\u003eImplications for future research and practice\u003c/b\u003e \u003c/p\u003e \u003cp\u003eBiosocial dementia support groups, such as the eight groups involved in this study, offer possibilities for different types of mutual support, joint advocacy, and activism (\u003cspan citationid=\"CR89\" class=\"CitationRef\"\u003e89\u003c/span\u003e). A previous study examined research-informed poetry in virtual environments (\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e) 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 (\u003cspan citationid=\"CR95\" class=\"CitationRef\"\u003e95\u003c/span\u003e) has implications for further literary-based research with this population. To further document the experience of support over time, stages of the dementia journey (\u003cspan additionalcitationids=\"CR97\" citationid=\"CR96\" class=\"CitationRef\"\u003e96\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR98\" class=\"CitationRef\"\u003e98\u003c/span\u003e) and the group\u0026rsquo;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, \u0026ldquo;allowing the expression of subjective and perhaps sometimes even contradictory impressions from participants.\u0026rdquo; (\u003cspan citationid=\"CR99\" class=\"CitationRef\"\u003e99\u003c/span\u003e, 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 (\u003cspan citationid=\"CR100\" class=\"CitationRef\"\u003e100\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR101\" class=\"CitationRef\"\u003e101\u003c/span\u003e).\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe flexibility of research poetry encourages methodological innovation that can involve different qualitative, quantitative and mixed-method analysis. The poems created in this study portray the complex and dynamic aspects of how support groups provide support for people living with rare dementia and care-partners. Through rigorous mixed-method analysis, multiple sub-themes and an overarching theme, A Community, Not an Intervention, were identified. Findings are discussed within the theoretical context of positive social identity, social health and biosocial groups. Methodologically, the results also confidently demonstrate that solicited words from participants can be faithfully portrayed in poems co-created by an experienced poet. This latter finding expands 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.\u003c/p\u003e "},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe would like to thank Rare Dementia Support (https://www.raredementiasupport.org/) and the people living with rare forms of dementia and their care-partners for participating in and \u0026nbsp;helping to shape this research. Additional thanks to our research funders for their generous support and anonymous grant reviewers for their encouragement to explore poetry as a research methodology in this population. The Dementia Research Centre is supported by Alzheimer\u0026rsquo;s Research UK, Brain Research UK, the Wolfson Foundation and the National Institute for Health Research University College London Hospitals Biomedical Research Centre.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDeclaration of Conflicting Interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no conflicts of interest with respect to the research, authorship, and/or publication of this article. 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. Authors Camic, Crutch, Harding, Hayes, Rossi-Harries, McKee-Jackson, Stott and Sullivan received grant support from the NIHR and ESRC (grant ES/S010467/1) for this study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe author(s) disclosed receipt of the following financial support 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 is 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. E. Harding is an ESRC funded postdoctoral research fellow (ES/W006014/1). JDW has received grant support from the Alzheimer\u0026apos;s Society, Alzheimer\u0026rsquo;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 Centre and the Royal National Institute for Deaf People.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthical Approval\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study has been approved by the research ethics committee at University College London (8545/004: Rare Dementia Support (RDS) Impact Study). The research presented in this paper adheres to the Declaration of Helsinki\u0026rsquo;s ethical principles for research involving human participants.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConceptualization: PMC, EH, LW, MPS, SJC, NZ\u003c/p\u003e\n\u003cp\u003eFunding acquisition: SJC, MPS, JS, RMJ, PMC\u003c/p\u003e\n\u003cp\u003eInvestigation: PMC, EH, SRH, MPS\u003c/p\u003e\n\u003cp\u003eMethodology: PMC, EH, MPS, SRH, OSH, SJC\u003c/p\u003e\n\u003cp\u003eProject administration: SJC, NZ, PMC\u003c/p\u003e\n\u003cp\u003eWriting \u0026ndash; original draft: PMC, EH, OJH, SJC, SRH, LW\u003c/p\u003e\n\u003cp\u003eWriting \u0026ndash; review \u0026amp; editing: SRH, MPS, EH, OJH, SJC, JS, NF, JR, CJM, JDW, RSW, RMJ, LW, PMC\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eWHO (2020) Dementia. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.who.int/news-room/fact-sheets/detail/dementia\u003c/span\u003e\u003cspan address=\"https://www.who.int/news-room/fact-sheets/detail/dementia\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePrince M, Wimo A, Guerchet M, Ali GC, Wu YT, Prina M (2015) World Alzheimer report 2015. 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Dementia 21(1):114\u0026ndash;135. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://journals.sagepub.com/doi/10.1177/14713012211029105\u003c/span\u003e\u003cspan address=\"https://journals.sagepub.com/doi/10.1177/14713012211029105\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[{"identity":"774388c3-0bd5-4459-be5a-0c87cfcb127d","identifier":"10.13039/501100000269","name":"Economic and Social Research Council","awardNumber":"ES/S010467/1","order_by":0}],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"University College London","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Support groups, non-memory led dementia, young onset dementia, research poetry, linguistic analysis, thematic analysis, arts-based health research, social health, biosociality","lastPublishedDoi":"10.21203/rs.3.rs-4281379/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4281379/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eIt is estimated that rare forms of dementia account for about 7% of all dementias and 10\u0026ndash;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\u0026rsquo;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.\u003c/p\u003e\u003ch2\u003eMethod\u003c/h2\u003e \u003cp\u003eUsing 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.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThe 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 \u0026lsquo;A Community, Not an Intervention\u0026rsquo; 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.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThis 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.\u003c/p\u003e","manuscriptTitle":"'A Torch, a rope, a belly laugh’: Engaging with the multiple voices of support groups for people living with rare dementia","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-04-19 18:38:29","doi":"10.21203/rs.3.rs-4281379/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"74dbb759-a5df-48e1-994b-370c7076b3e3","owner":[],"postedDate":"April 19th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[{"id":30796317,"name":"Integrative \u0026 Complementary Medicine"}],"tags":[],"updatedAt":"2025-01-09T13:50:54+00:00","versionOfRecord":{"articleIdentity":"rs-4281379","link":"https://doi.org/10.3389/frdem.2024.1488025","journal":{"identity":"frontiers-in-dementia","isVorOnly":true,"title":"Frontiers in Dementia"},"publishedOn":"2025-01-07 00:00:00","publishedOnDateReadable":"January 7th, 2025"},"versionCreatedAt":"2024-04-19 18:38:29","video":"","vorDoi":"10.3389/frdem.2024.1488025","vorDoiUrl":"https://doi.org/10.3389/frdem.2024.1488025","workflowStages":[]},"version":"v1","identity":"rs-4281379","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4281379","identity":"rs-4281379","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}