2 | 43 Table 3. Quotes from participants in primary studies to illustrate the identified themes. Theme 1: Views on starting a diagnostic trajectory Categories Quotes Feeling of needing to do something Well, a better understanding of exactly what it is, like what her condition is, like exactly what it is. I haven’t really been told from any doctor or anything, but we know there’s something about her memory, but I just don’t know what it is, I don’t know if it’s dementia. (daughter) Just to have a reason for his change. you have a person go from day to night, uh, just to know. what caused it would help. it doesn’t change the outcome at all but it just feels, it would be a help I think. (wife) (43) Mrs. Weber: “I think that everyone should do something for his health or illness. No? And not simply sit it out and put the blame on other things.” (42) Beliefs on the necessity of a diagnostic trajectory “Things that are important to her–her corns, she has very painful corns that sometimes leads her to not being able to move, and sometimes I can’t even get an appointment at the polyclinics. And then it gets worse to walk. . . To her, these two things matter more than her mind. In her mind, she’s fine.” (39) “Mr. Schwarz: “To my mind, such a test is all very well. But when there are no possibilities for healing, one can say: ‘You can still stop the process. Then I don’t know if you would tell people without further ado. I’ve got my doubts there.” (42) “Sometimes it is better to know than not know. It was the same with my husband’s cancer. Like once you know, you can deal with it. And this will be the same way. It seems like nowadays things have to be labeled. And once there’s a label of Alzheimer’s for my mom, then we can go forth. (daughter)” (43). C32: I just thought, there’s no harm in finding out.(41) Expected outcomes of starting a diagnostic trajectory I heard about a medication that can be taken to slow the process e not stop it e but it would slow the process so we were trying to get him in here. So I wanted [an assessment] to happen quicker. (wife) Well I’d like to think there’s a medication that would help her. It helps everything else. It certainly is not going to help her a year or two down the road, it’s not going to, it’s too late. I’m hopeful that maybe there will be yet. (husband) (43) Because I know it will help us. . . It’s better than we just, we try to look after her blindly and not know what’s going on or what has gone wrong. It’s better that we know exactly. Because this test will actually zero in right, which area and where she needs help. So we, we in fact we are happy to have such thing you see. We don’t mind the inconvenience. Ultimately it will help her and it will help us as well. (39)
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