Table 6.

People living with rarer forms of dementia and care-partners responding to completed poems by theme with illustrative quotes.

Stakeholder Group	Themes	Sub-Themes	Illustrative Quotes
PLwRD	A Collection of Understandings	Has Meaning for Me	“I love the completed poem, it has a meaning to me as I can relate to the words written down, and it’s interesting to see how a poem can be thought of by a list off words or sentences by different people” (6.1.PCA.PLwRD-1); I liked the way our various views and feelings were interwoven with other people’s responses to give an active description of the challenges of life living alongside dementia” (11.12.FTD.PLwRD-1); “I appreciated being able to describe some of my feelings about being ill and the sadness about no treatment/cure” (7.4.PPA.PLwRD-1); “It touches a chord for me. I absolutely like it and feel less alone in this…now I rarely write but when I read something good I’m amazed at the craft and how people put the beautiful words together and convey images or feelings succinctly. I can’t get it out right and it hurts that I’ve lost it but this makes me want to try again. Thank you! Great idea” (13.12.FTD.PLwRD-2).
		Staying Connected	“The poem helps to capture the different ways people are thinking about what support should be for them. The words or the ways of saying may be different, but the emotions and concerns behind those words are very similar. Clearly articulates the emotional and personal aspects of what are perceived as needs—caring, communicating, staying connected, kindness—seem to override the many physical supports required although they are just as important for the overall well-being of the person and their care giver)s)” (13.9.PCA.PLwRD-3); “I liked the idea that the words were formed into a virtual buttress to allow us to fight back and defend us from the trials and tribulations that our condition now causes us in our lives.” (11.12.FTD.PLwRD-3).
		Not Speaking to Me	“Sorry, did not sound like a poem—but maybe I am not up to date on how poems are now/can be. My words were taken fine. Very short comments—thought they could be elaborated more” (7.4.PPA.PLwRD-1); “It was more like a statement than a poem. It read a little bit like a poem, but much more like a book” (11.1.PPA.PLwRD-1); “To me with my understanding of what a poem is I did not find it to be a poem just a collection of words” (12.2.YOVaD.PLwRD-1); “I did not appreciate the poem. It seemed a little cumbersome and though I understand that these words were contributed by group members, I do not feel that the author expressed our deeper feelings” (11.10.PPA.PLwRD-2).
Care- partners	Crystallise Lived Experience	Bringing Into a Whole	“I really liked how it started out in the first line. FTD is indeed a journey. Then....beginning each stanza with the words “There is so much I could say...” Then, you HEAR this spoken from the perspective of each care partner. Each stanza stands on its own and is unique, which, to me, speaks to the disease itself. I very much treasure the final product and the creativity to bring individual parts into a whole” (8.4.FTD.C-2); “Beforehand was cynical about how a poem could be constructed from a collection of words submitted by various contributors. The final poem crystallises the various feelings, emotions and experiences of rare dementia carers” (5.8.PCA.BC-1);“Both my husband and myself really loved the finished poem and felt it expressed so clearly what it feels like to suffer from PCA. The title is excellent and the repetition of the first and last lines in each verse is particularly effective” (6.5.PCA.C-2); “Spoke volumes to me! It is amazing how different people’s thoughts could come together to create such a symbolic poem of dementia” (10.2.YOAD.BC-1).
		Not feel alone	“Reading the pain and hope of others makes me feel connected, and this disease typically causes such rifts of disconnection” (10.5.PPA.C-1). Initially I felt overwhelming sadness and grief, while at the same time it’s helpful to know you’re not alone in experiencing the impact the condition can cause” (5.7.PCA.BC-2).
		Shared experience	“Our poem appears to be a first opportunity for some of Eleven (as I now think of us) to experience their feelings in this way. I do not want it to stop. I KNOW those feelings, I have them EVERY day.....somehow there is comfort in sharing the awfulness of it all” (9.11.FTD.C-1). I enjoyed reading the poem because it was a thoughtful compilation of our shared experience with PCA. Hearing the thoughts and feelings of others living this challenge was comforting, encouraging, and empowering” (13.5.PCA.C-1); “I found reading it made me feel extremely emotional, it created a very strong response, seeing my words on the page amongst those of other people who are sharing different stages of this condition” (5.7.PCA.BC-2); “The completed poem makes me feel oddly secure. Caregiving is often a very isolating experience. Tying our reflections all together tethers our boats together” (10.5.PPA.C-3).
	Non-Resonating		“The poem does not meet the brief for me. As a means to inform those ignorant of FTD and its awfulness, it fails to elicit enough disgust, nor raise compassion towards those who daily battle it. I do thank the poet, of course” (9.11.FTD.C-2). “It was good to hear the words of others and to compare them (similarities and differences) to your own thoughts. We had thought that the ideas and feelings would be synthesized into a more holistic ‘statement’ that provided insight into the emotional and personal challenges experienced by this ‘group of people’ as a whole…(the poem) seems to be incomplete and lacks the emotional and insightful impact you would hope for in a poem of this nature” (13.10.PCA.C-2).