by seeking answers from professionals. Many participants described the battle they had in trying to convince their GP to refer them to the memory clinic for further investigation. On achieving their aim there was also a sense of tension between wanting to know, as a means of resolving their inner conflict, and fearing what might be discovered (i.e., being diagnosed with a dementia), which resulted in many feeling apprehensive about the prospect of being assessed at the memory clinic.
Most of the participants talked about wanting to find out if there was ‘something wrong with them’ although this desire for answers was often tempered with a sense of trepidation. Here Eric describes how he felt:
“and I wanted to find out, really...I wanted to find out if there was anything...” (Eric, p. 18: lines 313-314)
This seems to indicate that it was important for Eric to make sense of his difficulties and find out what was happening to him. In the interview, the tone of his voice when saying the word “really” seemed to suggest that Eric was trying to convince himself that undergoing an assessment was the right thing to do, despite perhaps feeling apprehensive at the prospect of this. In this dialogue he stops before completing the sentence, which was interpreted as him perhaps not wanting to think about what the “anything” might be. For Janet, she was definite about her need to understand changes she had noticed in herself:
“I...I REALLYneeded to know, you know, what it was...what was like erm happening to me...it was IMPORTANT” (Janet, p. 1: lines 4-6)
In the interview Janet emphasised the words “REALLY” and
“IMPORTANT”. The researcher experienced this, as indicating that, for Janet, making sense of her difficulties was a matter of urgency and that finding out was
important; perhaps due to the potential consequences of a diagnostic outcome. Janet went on to discuss the meaning of the assessment for her:
“felt that this was...going...to...tell...me...whether I had dementia or not...you know I thought that THIS WOULD be the final thing that make all the difference to the rest of my life” (Janet, p. 4, lines 52-54)
Here, Janet highlights just how important she sees the neuropsychological assessment is to the rest of her life, indicating that her expectations are that she will find out a definitive answer about whether or not she has dementia.
Many of the participants described how “seeking answers” was not a
straightforward process and they had to persist in asking to be assessed. David talked about how he had raised his concerns about his memory difficulties, with his GP, several times before being referred:
“but I had mentioned it to various GPs that I was concerned about my memory...but nothing happened for some time...” (David, p. 2, lines
22-24)
Jean also described how she was keen to make sense of her difficulties but her initial concerns were dismissed by her GP as being normal:
“and I think...you know “let’s find out much...” in other words “let’s investigate”, I told my doctor that I worried about my memory and she said, well...as most people say, “oh well of course we do, I always forget names half way through” and all the rest of it, BUT it’s not so much the names, it’s...it’s more than that and I realised that something wasn’t quite right in that line...in that vein...and therefore let...I TOLD her, and she said “well I will then refer you” (Jean, p. 14: lines 225-
233)
This extract highlights how, for Jean, her internal experience of her difficulties felt far from normal and she persisted in asking for an explanation. There is also a sense here that perhaps Jean felt her GP remained reluctant to refer her. For Zeena she described having to “fight” to be assessed:
“well I had to fight to come here, that’s true, like err I remember 3 years ago I had been telling...I was telling my doctor, you know, that I forget things, you know, so...at least 3 or 4 times I did mention and the...they didn’t take notice of it...” (Zeena, p. 6, lines 105-108)
Here again, there is a sense that Zeena felt her concerns about her memory had not been addressed or taken seriously.
Although participants wanted to understand what was wrong with them there was also a sense of trepidation and worry about what might happen during the neuropsychological assessment, and what the outcome might be. As Jean put it:
“I thought “oh dear”, you know...ummm...”what are they going to find out about me, what are they going to ask me” (Jean, p. 24, lines
413-415)
Jean had been talking about wondering what the neuropsychological assessment might discover. Here there is a sense of her considering the reality of what might happen as though perhaps something might be uncovered about her that could then no longer be hidden. Mick also described similar worries to Jean:
“worrying about what would happen...in the end...but I was also worrying about the questions...” (Mick, p. 1, lines 5-7)
It is interesting to consider how, for both Jean and Mick, they highlight their concerns about the outcome of their neuropsychological assessment, before
questioning what might happen in the assessment itself. The order in which they discussed their worries was considered meaningful, perhaps indicating that underneath it all, their main concern was with the outcome over everything else.