Table 3 Examples of question development from quotes

A good laugh does me good

A good laugh will do you any good, do you great good

Scoping review: Casey & Murphy (2016)

I take a positive outlook on life

I can’t cope with negative people… it’s got to be a positive outlook on life, so that you can help other people.

Stakeholder engagement activity (The Caban Group)

There are still lots of things I can do

But I mean, once I- I learned to live with it, well, okay, there are lots of things I can’t do. But there are still lots of things that I can do, so… That’s the only way I can look at it

Interviews with people living with a rare dementia and carers

I live for the day

I live for the day, and I don’t look too far into the future… I live for making memories, trying to be useful, and contribute in some way

Stakeholder engagement activity (The CabanGroup)

Making adjustments helps me carry on

I work out, I go to the gym, I still go out with people. I still go to friends. Things have changed, but I still go out…. I’ve had to make adjustments; like I can’t do those things on my own. But I haven’t stopped.

Scoping review: Williamson & Paslawski (2016)

I get tremendous support from my family

I get a lot of support from a lot of people. I get tremendous support from my family.

Stakeholder engagement activity (The Caban Group)

I have a good social life

And- but we’re good- we had a good social life. And we still get a reasonably good social life, so I’ve got nothing to complain about.

Interviews with people living with a rare dementia and carers

I get support from others experiencing similar challenges

We have met people who are of our age-group and at a similar kind of stage in their journey with dementia, shall we say.

Interviews with people living with a rare dementia and carers