Table 3 Quotes illustrating positive impacts of OPBT

Q7

R15, 50% risk, female, 50–60

“Reduce stress, do good things for myself, good diet, yes, spend more time with my son. (…) But yeah, not postponing anything anymore, going on trips, do nice things.”

Q8

R11, 50% risk, male, 40–50

“I work five days a week now. Well, would you still do that then? Or would you say: hang on, yes, I am going to phase out, work fewer days, but do other things that I enjoy. (…) Of course you have to look at your role, like: how can you keep functioning in your role for example? (…) I think you can still be of good value for a very long time without being troubled by the dementia part, actually.”

Q9

R14, known carrier, female, 50–60

“In the ideal situation, I say at the moment that I am still competent: I am just stepping out [ending my life]. And I hope that I will be brave enough for that at that time. It’s not about living as long as possible for me.”

Q10

R19, 50% risk, female, 30–40

“Maybe that I become more relaxed [with my health] then. (…) Then it does not matter anymore, because then I cannot slow it down anymore. Right now I still just think about my general health (…) then it matters less.”

Q11

R23, known carrier, female, 30–40

“A sort of relief, like: it’s not there yet. I can breathe for a while. But then maybe also that the question pops up, like: well, when, then, with the next [testing moment]? What will be the result then?”