Table 5.

People living with rarer forms of dementia and care-partners’ experience of writing by theme with illustrative quotes.

Stakeholder Group	Themes	Sub-Themes	Illustrative Quotes
PLwRD	I Wanted to Do It	Challenging but Enjoyable	“I am much more comfortable with the written word than I am with verbal conversation and that carries over to writing poetry”; (12.4.YOAD.PLwRD-1), “I found it very easy to just sit quietly and let my thoughts form my words” (12.6.YOVaD/.PLwRD-2), “I found finding the words was relatively easy as it was around the basic support that I feel I need on an ongoing basis (11.12.FTD.PLwRD-3)”; “Challenging but nonetheless enjoyable” (11.1.PPA.PLwRD-2); “I found the first word was difficult and challenging, but found after the first word was down, the rest just seemed to come easily, and it was then enjoyable” (6.1.PCA.PLwRD-2); “Having never written poetry before I found it challenging but a positive thing to do” (6.7.PCA.PLwRD-3).
		Hurts So Much	“I had a very hard time understanding the question and accessing the words. I felt very detached” (13.3.YOAD.PLwRD-2); “Sensed that I was having problems, Frustrated, when can’t remember” (8.1.PPA.PLwRD-2); “Challenging and to start and scary to go in your feelings cause I try to suppress how I really feel cause I’m afraid to go negative and think of all that hurts so very much but it ends up feeling so good to get it off your chest and ends up being cathartic. So much that I would like to go deeper and write more and get out my sad feelings instead of pushing them so deep and these 2 exercises have made me realize how good it is to see it on paper and hear it read by someone. It’s such a good idea.” (13.12.FTD.PLwRD-2).
		Purposeful	See Section 3.2.1 in the text
Care-Partners	Consolidating	Challenging/Difficult	“Challenging to distil my thoughts in just a few words” (6.5.PCA.C-1) “I struggled a bit to decide on what words really captured my experience” (10.3.YOAD.C-3, “First was the battle of just getting to the task but to actually sit down and consolidate the thoughts into sentences was met with great reluctance” (13.10.PCA.C-2).
		Enjoyable	“It was easy and enjoyable for me. The words popped into my head quite readily. It was interesting to me to realize how much can be said with just a few words (13.8.FTD.C-1); “The experience was enjoyable because I think of many words that mean ‘support’. It was cathartic to put those words on paper, and I felt less isolated and more supported knowing that other people were doing the same thing” (13.8.FTD.C-3).
		Purposeful	“It was not a challenging task because I immediately knew what I wanted to say and I found it exciting to add to the gut-level offering I knew it would become…My staccato words express the small bites at life which is our daily experience; one thing at a time is the only way to survive this.....for us.” (9.11.FTD.C-1); “…forced me to truly think about what I would most want a friend or family member to know about the diagnosis from my perspective as care partner to my wife. I believe I captured that well” (8.4.FTD.C-2).
		Reflective	“In the end I decided to share some of the common themes I would tell others during the experience. It was touching to remember those days and to reflect on how I feel now versus how much harder it was when she was alive” (10.3.YOAD.BC-1); “It was helpful in causing me to actually sit down and reflect on what we wanted (needed?) people to know and how to interact” (13.10.PCA.C-2).