Trying to adjust and move on In making sense of their

neuropsychological assessment experience, all participants described ways in which they attempted to adjust and cope with their neuropsychological assessment

outcome. Participants had described how emotionally impactful receiving their results was for them and how for many this had threatened their prior sense of self (see section 3.3.4.1). The way in which participants coped was influenced by the outcome they were given and the way in which they made sense of this. Participants tried to adjust and cope in a range of different ways, including trying to compensate, trying to carry on as normal, accepting limitations, remaining hopeful, and

reassuring themselves. Coping strategies adopted seemed to be self-protective or integrative and aimed at trying to achieve a positive sense of self.

Participants who received a diagnosis of AD described ways in which they attempted to compensate for their difficulties. Terry had talked about his shock at receiving his diagnosis and fear of losing control, and here he describes attempting to compensate for his future loss by organising and planning ahead:

“and on a Friday the last thing I do is get everything ready to make

she knows where everything is, sorted, life insurance, pensions, everything  else”  (Terry, p. 27, lines 440-443)

In planning ahead now, it seems that Terry is perhaps preparing for an unknown and potentially threatening future by trying to ensure that his family are looked after, thus maintaining his role as husband and father and sense of himself as a competent, whole individual. Completing this task also appears to provide Terry with a sense of accomplishment and self-efficacy despite him feeling worried that his abilities have deteriorated (see section 3.3.1.1).

For David, using external aids enables him to compensate for his memory problems and allow him to maintain a sense of normality and control in his life now:

“I  can  live  my  life,  I  keep  a  day  pad  everything  that  I  need  to  do   today  and  then  I’ll  start sticking  on  things  for  tomorrow,  I’ve  got  a   laptop  which  I  keep  going  erm,  so  I  know  what  I’m  doing”  (David,  p.   14, lines 223-235)

What came across from his account was how adopting his usual problem- solving strategy enabled him to maintain his sense of self as capable, which was in stark contrast to his experiences during the neuropsychological assessment testing phase when he felt unable to complete the tests (see section 3.3.2.2). Feeling and being perceived as capable and normal was important for David and he had spoken

about not wanting others to know he had been diagnosed with AD, perhaps suggesting how stigmatising the label of having dementia was for him.

For others, accepting their difficulties enabled them to integrate new

knowledge gained from the neuropsychological assessment into a new view of their self. For Jean this translated into her accepting her difficulties within the context of her current capabilities and using this to remain optimistic about the future:

“I’ll consider myself quite fortunate if I continue to the end of my life...as  I  am  NOW,  I’d  like  to  be  brighter,  I’d  like  to  be  a...as  I  used   to be may be, erm...but...I feel at the moment I can...plod along quite merrily, quite happily erm, you know, ad infinitum”  (Jean, p. 19-20,

lines 323-327)

Although Jean acknowledges her deterioration and desire to want to return to her prior self, focusing on her current capabilities and what she can do has enabled her to accept herself. There is a sense that her acceptance only extends to how she views herself now, and despite her doubts, her hope that she remains the same is evident. The researcher wondered if this reflected her uncertainty about the meaning of being diagnosed with MCI.

For other participants (Mick and Derek), being told their problems were associated with psychological factors posed much less of a threat to their sense of self than being diagnosed with dementia, making it much easier for them to accept their difficulties. Here Mick describes his experience:

“now  I  don’t  really  think  about  it...it’s  how  I  am...that’s  me  

really...but  a  relief  it’s  ok...well  not  ok  but  you  know...it  could  have   been much worse” (Mick, p. 19, lines 270-272)

For Mick, finding out his difficulties were likely to be related to psychological factors was a huge sense of relief and seemed to immediately

alleviate his distress. There is a sense that Mick felt that any other explanation was better than being told he had dementia, perhaps highlighting how stigmatising he viewed dementia as a diagnostic label. Mick’s  acceptance  of  his  difficulties  is   demonstrated here in  how  he  refers  to  his  “current  self”  in  the  present  tense  “it’s  

how  I  am”. This seems to indicate how Mick has integrated his understanding of his

difficulties into a new and updated view of self.

For Derek feeling accepting of his problems enabled him to change his style of coping and become more accepting of himself. Rather than feeling frustrated and becoming angry with himself, he instead engaged in reassuring self-talk:

“now  I  know  it’s  based  on  anxiety  and  stress  if  I  forget  something   then  I  just  say  to  myself  “well  I’m  a  bit  stressed  out  that’s  obviously   why  I’ve  forgotten  it”  (Derek, p. 28, lines 481-484)

In contrast with Derek and Mick, Eric’s attempts to reassure himself that he did not have dementia were less successful:

“and  I  have  to  keep  reminding  myself  that,  you  know  that  there  isn’t   anything  there,  it’s  not  showing but err...I dunno know...I dunno, things  just  keep...you  know  my  memory’s  still  bad,  so...(sighs)  (Eric,

p. 21, lines 365-368)

Eric had previously spoken about his doubts over his neuropsychological assessment results and how they appeared to conflict with his self concept and experience of the neuropsychological assessment (see section 3.3.4.1). Here he describes trying to reassure himself “that  there  isn’t  anything”,  however continuing to have memory problems seems to reinforce his doubts, making it difficult for him to accept his results. His difficulty in accepting his results means his uncertainty about himself is maintained.

For participants who received inconclusive results (Janet and Zeena), coping was aimed as trying to adjust to the uncertainty of not knowing. In the absence of a definitive answer, both Janet and Zeena attempted to carry on as usual, thus

demonstrating how they were still the same person. For Zeena this meant maintaining her usual “fighting”  spirit:

“I’m  trying  to  FIGHT  everything,  you  know,  that...to  try  and  

remember,  you  know,  and  I’m...I...I  don’t  want  to  be  in  that  stage  and   things like that, you know, so I try to write everything down, you

know, I try not to be in that stage,  you  know,  I’m  a positive person, you know”  (Zeena, p. 16, 269-273)

What comes across here is how Zeena is determined to tackle her problems head on and not be held back by her difficulties. There is also a sense that she is “fighting” the possibility of having dementia, in the way she talks about not wanting to “be in that stage”. Fighting seems to serve a dual purpose in enabling Zeena to manage her difficulties as well as trying to maintain a view of herself as a person who does not have dementia.

Janet also talked about trying to carry on as normal, however for her the worry that she might have dementia seemed to interfere with her achieving this:

“I have to get on with it...trying to get on with it...trying to be normal

(laughs) what that is (said  quietly)  trying  to  enjoy  things,  forget  it”  

(Janet, p. 16, lines 253-255)

What comes across here is how, in the absence of knowing whether or not she had dementia, Janet feels there is no other alternative than to try and accept things and get back to normal. However the uncertainty of not knowing continues to threaten Janet’s  sense  of  self, making it difficult for her to know what normal is. It is interesting  how  at  the  end  of  her  sentence  she  says  “forget  it”; the researcher

wondered if this, perhaps, represents just how impossible it feels for her to carry on as normal.