Subsistema de Ventilación y climatización - Datos de partida

process for all participants, with the main driver being to understand their difficulties and find out whether or not they had a dementia. This subtheme explores

participants’ reactions to receiving their results and the impact this had on them and their sense of self. Participants’ reactions and responses were influenced by the outcome they received and how they made sense of this. Participants’  outcomes differed; some were given a diagnosis of dementia whilst others were told their difficulties were attributed to psychological factors, some results were inconclusive and one participant was told he did not have any impairment. Responses varied and included feelings of shock, disbelief, confusion, frustration, loss, validation and relief.

Participants (Terry and David) who were given a diagnosis of AD described slightly different reactions.

For Terry, thinking that he might have dementia, in no way prepared him for the shock of actually being told he had dementia:

“it’s  like...  you  think  it,  cos  you  know  you  aren’t  doing...aren’t  doing   things  right...but  well...but  well...you  DON’T  WANT  IT  (pause),  when you  get  it”  (Terry, p. 31, lines 505-507)

Although his prediction was accurate and therefore in a way served to resolve his questions about himself, there is a sense here that Terry would have welcomed being incorrect. In emphasising not  wanting  “it”,  the  researcher  

wondered if Terry felt there was no escaping from being seen as a person with dementia, perhaps highlighting how stigmatising he felt this diagnosis was.

David described feeling a sense of resignation in being given a diagnosis of dementia:

“I  didn’t  really  expect  a  lot  different  from  what  I  got,  but  I  am   concerned about how the family have gone, and how how my brother is  less  than  4  years  older  than  me”  (David, p. 20, lines 341-344)

David has a significant family history of dementia, and there is a sense here that in confirming his fear about having dementia that David’s  fears  about  his  future   are also confirmed.

Finding out their memory problems were associated with psychological factors rather than dementia was a huge sense of relief for some participants (Derek and Mick). Whilst Mick had described feeling emotionless throughout much of the neuropsychological assessment, his relief in finding out he did not have dementia was clearly evident in the interview:

“it  was  better...than  I  thought...I  thought  I’d  done  bad...you   know...thought  it’d  be  really  bad...so  I  was  relieved”  (Mick, p. 12,

lines 164-166)

“the  best  bit  was  when  she  told  me  that  I  didn’t  have  a  problem,  so that was the best bit...so...I mean there might be reasons why I forget things  but  those  reasons  were  identified”  (Derek, p. 9, lines 147-150)

Here Derek emphasises just how important and meaningful it was for him to be told he did not have a dementia, shown  in  the  way  he  repeats  the  words  “best   bits”. It is interesting how he relates not having dementia with not having a problem as though perhaps he perceives anything thing else as changeable and under his control. Not being given a diagnosis of dementia at this time, allows Derek to consider the results from his neuropsychological assessment in a much less threatening way and the explanation he is given allows him to make sense of his difficulties, thus resolving his internal uncertainty and angst.

For others (Janet and Zeena) their results were inconclusive warranting a further neuropsychological re-assessment. This uncertainty left them feeling

confused and with unresolved questions about the reason for their difficulties. Here, Janet describes how she felt:

“I suppose the feedback was that there was NO ANSWER, well yeah

really...it  didn’t  show  one  way  or  another....  (pause)  ....tha...that’s   difficult (pause)...I thought it would say...they would be telling me...us...that I had dementia...my memory is SO RUBBISH, but the...the tests were not picking that up as badly as...as I...as...I

THOUGHT (pause) (pause) so good in some ways errr...erm...yeah confusing  “is  it  dementia  or  not?”  (Janet, p. 14, lines 227-233)

For Janet receiving no definitive answer was significant. She had spoken at length about her worries and expectation she would be told she had dementia (see section 3.3.2.2), and saw the neuropsychological assessment as her way of finding out. Whilst she appears relieved to some extent (i.e., no news is good news), she is ultimately left feeling confused and continues to wonder if she has dementia. Her perception of her memory difficulties appears far worse than her results suggested, and rather than being comforted by this, this leads her to question the sensitivity of the neuropsychological tests. This is demonstrated in the way she talks about the tests  not  “picking”  up  on  her  memory  problems. There was also a sense that Janet felt disappointed and let down as she had pinned so much on the outcome of the neuropsychological assessment providing her with a definitive answer:

“it  didn’t  do  what  I  wanted  it  to  do  really,  no...gave  me  no  real  diagnosis  about   why my memory is so bad really”  (Janet, p. 15, lines 238-240)

Her sense of despair comes across here and she is left unable to resolve concerns about herself and her inner turmoil is maintained.

Zeena shared similar feelings of confusion and uncertainty with Janet, however for her, not receiving an answer, resulted in her questioning her own perception of herself:

“how  can  I  be  forgetting  things  am  I  making  it up or what then, but...I do REALLY genuinely forget things sometimes, you know, and that’s  why  it  worries  me  that...how  come  I’m  forgetting”  (Zeena, p.

17, lines 293-295)

This extract seems to highlight Zeena’s  internal  conflict; on the one hand wondering if she is imagining her memory difficulties, given her

neuropsychological test results, but on the other hand feeling sure that she does forget things. Being unable to reach a firm conclusion leaves her confused and worried.

For Eric being told that he did not have dementia was equally as confusing as this information appeared to conflict with his own perception of his difficulties and his experience of the neuropsychological assessment:

“I  really  felt  that...I’d  done  something  wrong,  you  know,  that  it  was   gonna be bad...BAD news, you know, but now they tell me there isn’t...seems  impossible  really,  but  I  guess...I  guess  it  is...must  be   right...”  (Eric, p. 5-6, lines 92-96)

Eric had found the neuropsychological assessment extremely stressful (see section 3.3.2.1) and his perception was that he had failed to complete any of the tests adequately well (“I  just  couldn’t  do the lot of it”, p. 4, line 66), resulting in him

assuming it would be bad news. Eric appears mystified by his neuropsychological assessment results, which is demonstrated in the way he talks about it seeming impossible that he has not be diagnosed with dementia. Without being able to resolve this mismatch between his sense of self as having memory difficulties, and his results, he appears reluctant to accept his outcome, and his uncertainty remains.