Table 4 Categories of qualitative feedback identified using content analysis and the frequency of each

Provide iSupport at the point of diagnosis

5

iSupport RDC would be useful for people sooner after diagnosis. Recruiting through the RDS meant that participants already have access to a lot of information and several participants said that they had been caring for a long time so learnt these tips from other sources

“iSupport wasn’t particularly relevant for me; the reason for this is that my husband is now in his sixth year since diagnosis and I already have found out or researched the (albeit very useful) information long ago, so I am already familiar with all the strategies and suggestions the tool provides. Having said that, I know I would have been very grateful for something like this when we were at the start of this journey, when I found it virtually impossible to get the help and information we needed.”

Useful and informative

7

iSupport RDC gave them useful information, that the external links were useful, it was not patronising and very relevant for carers of people with rare dementias

“I found it easy to follow. It was also really refreshing, it wasn’t condescending. It felt supportive & creative & enabled space in challenging situations.”

Technical difficulties

10

Problems logging in, navigating the platform or other IT related problems were reported. These problems include incompatibility with browsers or operating systems and difficulties following the login process

“I have tried a couple of times to log on and it says my browser doesn’t allow TDM to function so needed the PDF.”

Information to add or expand on

3

Suggestions to add additional information to iSupport RDC were made, including information on Charles Bonnet syndrome, more about planning ahead, reassurance that carers can cope and emphasis on the fact that although rare dementias are more likely to occur in people below the age of 65, they do occur in older adults as well

“I would have liked a bit more about planning for the future and what might come next, knowing we can cope and being prepared and confident etc.”

Different format would be preferred

3

Preference for a different format was expressed: a paper copy, the PDF version, and online support was not seen as useful

“My only “criticism”? I would like this in printed and bound form, as a companion manual to sit alongside me and my coffee; I’d buy one.”

Difficult to integrate into life as a carer

1

Difficulties with integrating iSupport RDC into life as a carer and that reminders might be helpful

“I find it difficult to integrate it into my life as a carer. Along with everything else I needed to do. Maybe a nudge would work for me. I try to make time for everything, but something always slips.”