Table 5 The main themes and subthemes and illustrative quotations from the end-of-study interviews with 5 patients

Experience of participating

Patient information sheet was too long and complicated.

‘Yes, I thought so, I let my husband read it too, but yes, I thought so […] I think there was a lot of technical language in it, maybe making that clearer would help? […] I guess some people might get lost in it maybe?’ (patient-participant 2).

The preparation for the OFF medication sessions was acceptable, and the sessions themselves were manageable.

‘The OFF days were interesting to see what I would be like but, not too concerning. It’s basically like when you forget to take a tablet or miss one by accident you know, which happens I can tell you, and then I will be out somewhere and will realize […] it was fine, really, it’s no different to when I forget to take them. You slow down a bit, but you take more care don’t you? […] yes [it was manageable].’ (patient-participant)

‘To be honest, I could tell I was slower, but other than that there isn’t that much difference really. I was careful, when walking around the house because I knew I was slower.’ (patient-participant 8).

The experience of switching was acceptable to participants.

‘It was okay. I think when I switched there was a day where I was a bit worse than normal, but that could have been when I was coming off one and starting the next I suppose couldn’t it? But then the following day I was back to my normal self actually. I didn’t really have any problems.’ (patient-participant 6)

Participation did not have a major impact on the caregiver.

‘Oh not at all. I mean we talked about it before I decided to take part, obviously, as you would. But it didn’t do anything to him really. I mean, I like to be as independent as I can, while I can.’ (patient-participant 2)

‘No not really, she came with me to the hospital for those times. But I think that is it. She reminded me of the appointments as well […] Yeah, it’s because she is in control of the diary you see?’ (patient-participant 3)

Motivation to take part

Helping someone else.

‘So we need to do these, going back, we are benefitting from things that others have done for us and we can pass that forward now, for future people. […] I thought it would be good to contribute something back you know.’ (patient-participant 2)

‘To help someone further down the line […] Because that is why we’ve got the medications we’ve got now, because those have done it before.’ (patient-participant 12)

Trying a new drug may help their symptoms.

‘No, not really. I was interested to see if the other drug would be better for me, whether I would see any improvement, or whether I would be worse. Because, I had never tried it before. I was interested to know.’ (patient-participant 6)

‘I hadn’t really thought about it like that, I was hoping it would improve my walking and make me a bit better actually, as it happened, I couldn’t really tell the difference at all.’ (patient-participant 8)

Concern about their own memory and recognition of the importance of memory research.

‘That’s why I took part, and have taken part previously. Memory is so important, especially to me […] it feels awful when I forget little things. It’s just little things. But it gets to me […] Well people’s names, is frustrating, you know it too, it might be someone you know really well. You know what I mean?’ (patient-participant 6)

‘I think about my memory a lot. It’s why I took part […] You want to know if it is getting worse don’t you? Especially if it’s worse on one tablet […] People don’t really think about that, do they? I would want know if they were making my memory worse.’ (patient-participant 8)