Table 4.

Themes, sub-themes and illustrative quotes.

Themes/ Prompts	Sub-Themes	Illustrative Quotes
Temporality Disrupted/What is your experience of having (type of dementia) or being a family member caring for someone with this type of dementia?	Unchartered Territory	“A journey into the unknown, caring in love, the constant challenge of adapting” (6.5.PCA.C-1); “Doors closing, fading slowly. Becoming invisible and written off” (9.12.FTD.PLwRD-1); “uncharted territory, cascading loss, fear and uncertainty about what’s coming next” (13.5.PCA.C-1); “The sister I loved so dearly was being taken from me, piece by piece” (10.2.YOAD.BC-1); “Our dreams are shattered and we will never be the same again, I never thought a disease could be so horrible and have such a dramatic impact on a family” (13.11.FTD.C-1); “Losses of myself, my essence, my work, my driver’s licence, my job, my body, friends, love of husband” (13.12.FTD.PLwRD-1); “I’m stuck here with a rare disea eeeze and the physicians don’t have a clue” (12.5.LBD.C-1); “professionals [who] seem at a loss and are slow to respond” (13.9.PCA.PLwRD-1)
	Being in the Moment	“Time slows down and remembering to truly be in the moment” (5.1.PCA.BC-1) “Trying to be positive and know these moments with him won’t come again” (10.4.MD.C-1) “Take every opportunity to have a laugh” (6.17.PCA.PLwRD-1)“At first it was a hectic pace, as time passed I felt more at peace that I am doing the best I can do” (8.3.FTD.C-1).
	Re-discovering Identities and Relationships	“Then curiosity and call to action took over. I have been learning about myself and a brighter side of this world ever since. I am energised and happy” (11.10.PPA.PLwRD-1); “I needed to accept what was what and become a better person. I needed to fight, be more patient and find answers. (8.3.FTD.C)
A Rollercoaster/How would you describe (type of dementia) to a friend or family member?	Heartbreaking Losses	“heart breaking” (10.3.YOAD.C-2; 12.7.FTD.BC-2; 9.10.FTD.C-2); “frightening” (9.16. FTD.C-2; 6.23.PCA.PLwRD-2); “The Destroyer of Lives” (9.11.FTD.C-2); “the cruellest dementia you have never heard of” (9.3.FTD.C-2); a “rollercoaster” (12.7.FTD.BC-2; 5.8.PCA.BC-2); “constant emotional and physical ups-and-downs” (8.3.PPA.C-1) “She is still the same person, but is not able to do the things she used to do because of the disease” (13.10.PCA.C-2); “Not able to make any decisions big or small on most basic tasks. Choking often, falling, loss of balance. Loss of not being able to accomplish what used to be second nature” (13.12.FTD. PLwRD-2); “Brain blindness. Extreme turmoil. Unwavering braveness. An excruciatingly slow drip of profound loss” (7.7.PCA-C-2).
	Shifting Selves and Changing Worlds	“A disease that…erodes everything you thought about that person and your relationship with them. A disease that eats away the soul of the person and everything they are or who they had wanted to be.” (9.10.FTD.C-2). Profound changes in how the self relates to the world created a sense invisibility, “Increasing opacity between me and the world” (11.5.PPA.PLwRD-2), “You just don’t see me anymore” (12.4.YOAD, PLwRD-2); “retreating into own world” (9.4.FTD.C-2).
	Misdiagnosed and Misunderstood	“Things aren’t where they appear to be. Which way round does this go? Where is the top or the bottom?” (6.5.PCA.C-2)“A neurological disease that does not follow the perceived norms of dementia of memory loss and only for the older person but far more aggressive and devastating as it affects behaviours and personalities of younger people in ways that make them disinhibited, lacking empathy and insight” (9.10.FTD.C-2); “a misdiagnosed and misunderstood condition” (6.22. PCA.C-2); “they never say drop him off to my house and get your hair done … they just say LOOK AFTER YOURSELF” (9.20.FTD.C-1)
Multidimensional Support/What does support mean to you?	Not in This Alone	“Support means not feeling utterly alone. It means having someone to help bear the unbearable” (P7.7.PCA.C-3); “Meeting others who are in the same place as you and who understand” (P9.10. FTD.C-3); “a togetherness beyond family” (P5.1.PCA.BC-3); “Support helps me when I get confused and frustrated…it helps me live my life independently” (P6.1.PCA.PLwRD-3); “Being part of a PPA network, not feeling alone…giving me a degree of comfort” (P11.1.PPA.PLwRD-3); “Subject matter experts who listen objectively and share their expertise” (P8.3.FTD.C-3); “Professional help to educate doctors and the general public” (P13.12.FTD.PLwRD-3); “Provide support strategies that are specific to my condition” (P13.9.PCA.PLwRD-3) “Others understand or have travelled this road as well” (P13.2.YOAD.C-3).
	Compassion and Understanding	“Support means you are aboard my train and will help in any way you can” (P8.4.FTD.C-3); “Taking time to listen and giving time for talking (P13.PCA.PLwRD-3); “In between there is support that helps me see things differently and support that just takes time to listen and see things the way I do” (P10.3YOAD.C-3); “Old fashioned underwear” (P6.8.PCA.C-3); “From someone to hug me to someone who can take over when it’s too much. Someone who listens….and believes me” (P10.1.FTD.C-3); “Learn to accept me as I am, with all my faults and errors” (P12.4.YOAD.PLwRD-3); “Not judged by expression of my thoughts or feelings” (P10.2.YOAD.C-3); “Support me by showing acceptance” (P12.6.VD.PLwRD-3); Help to affirm decisions” (P5.2.PCA.C-3).
	Support As An Action	“Always include stimulation. Always include companionship” (P12.3.FTD.PLwRD-3); “Support means enablement/kicking ass/being there when down” (P6.14.PCA.PLwRD-3); “It lifts me up in times of doubt. It allows me to move forward in a positive way with my life.” (P11.12.FTD.PLwRD-3); “Unconditional actions to ease the burden of care” (P12.7.FTD.BC-3); “If I am able to connect/talk with others that have PPA and I am able to help/support them—that is very helpful for me” (P7.4.PPA.PLwRD-3); “Support is helping me to feel better about myself as I contribute to help others.” (P7.4.PCA.C-3)