Testing by name testing by nature

Feeling uncertain about themselves appeared to provide a contextual backdrop in which subsequent assessment experiences were appraised. Overall the assessment Participants spoke of how they found the neuropsychological assessment for possible dementia a particularly intense and emotionally distressing time.

Emotional responses varied amongst participants, and appeared influenced by their perceived performance. Some participants portrayed their experience of the neuropsychological assessment as an emotional rollercoaster, characterised by a series of highs and lows. Enjoyment and confirmation of competence, associated with perceived success, were soon replaced by feelings of frustration and worry when participants were faced with tasks they found difficult or impossible to complete. Whereas for others being tested seemed to solely highlight their

inabilities. Participants spoke of their disbelief in not being able to complete certain tasks they perceived as simple and straightforward. Finding different tests

consistently  difficult  to  complete,  seemed  to  reinforce  participants’  prior  fears  that   their cognitive functioning had deteriorated, resulting in them feelings a sense of loss, frustration, inadequacy, confusion and anxiety, thus compounding the threat to their sense of self as a capable individual. Others experienced the

neuropsychological assessment process as isolating and described how they felt all alone and unable to seek support from others.

Despite receiving a detailed explanation of the neuropsychological assessment process, many participants described feeling ill prepared for the emotional reality of being tested. This perhaps highlights the discrepancy between

having a logical understanding of a set of procedures, and their subsequent emotional reaction to these.

Participants found the nature of the neuropsychological tests, and method of administration, strange and confusing, which appeared to exacerbate their distress and maintain their sense of uncertainty about their abilities. For many the tests appeared to feel devoid of real life abilities, leading some to feel as though they were “caught  out”,  whilst  others  questioned  the  usefulness  of  some  tests.  For  many  this   sense of threat and uncertainty was experienced as them not feeling in control. This was  also  evident  in  Keady  and  Gilliard’s  (2002)  study  where  participants  described feeling confused anxious, and uncertain of the purpose of the tests.

With the neuropsychological assessment viewed as the way for participants to make sense of the changes they had noticed in themselves, finding ways of “getting  through”,  in  spite  of  their  distress,  emerged  as  important.  Participants utilised a range of different coping strategies, including remaining task focused, ‘switching off’, trying to remain positive, thinking ahead and focusing on their goal of wanting answers. Coping strategies adopted seemed to be self-protective and aimed alleviating their distress and/or minimising threats to their self-concept. Some participants used a variety of coping strategies, whereas others maintained the same response throughout. Many participants described using well-practiced coping strategies whereas for others, the neuropsychological assessment process created new challenges requiring them to adopt new ways of coping.

Having to wait weeks for neuropsychological assessment feedback was a source of frustration for all participants. The lack of feedback provided during the

neuropsychological assessment  appeared  to  compound  participants’  distress,  leaving   them with unanswered questions about their performance, thus maintaining their uncertainty and worry about their sense of loss of functioning. In the absence of receiving feedback during the neuropsychological assessment, participants actively sought to resolve their uncertainty by attempting to appraise their own performance. Without  access  to  objective  information  about  their  performance,  participants’   appraisal of their functioning appeared informed by their subjective emotional experience. Participants had spoken about how they found the tests distressing and difficult,  and  this  “bad”  experience  seemed  to  translate  into  them  all  assuming  that   they  had  performed  “badly”,  and  consequently  predicting  that  their  functioning  had   deteriorated. Participants routinely used their self-appraisals to make predictions about their neuropsychological assessment outcome, resulting in many fearing that they would be diagnosed with dementia. However, for some their subjective appraisal was inaccurate, resulting in them feeling increasingly confused and mistrusting  of  either  the  test  results  or  of  their  ability  to  “understand”  themselves   (see section 4.2.4 for further discussion).

4.2.3 Professional roles: different sides of the same coin

The social context created by the psychologist during the neuropsychological assessment, greatly impacted on how participants perceived, experienced and

responded during their assessment. Both positive and negative experiences were described. Of particular interest in the present study was how participants

collaborative during the clinical interview, and task-focused and didactic during the testing phase.

These opposing approaches seemed to generate opposing experiences, with participant responses mirroring that of the psychologist. The warm, collaborative approach (clinical interview), engendered a sense of trust, enabling participants to feel valued and involved, and openly discuss their difficulties without feeling judged. In contrast, the didactic and task-focused approach adopted during the testing phase was experienced as controlling and closed, creating an environment in which participants felt closed off and unable to voice their concerns. Different approaches were also associated with a change in the balance of power within the psychologist-client relationship. A collaborative stance engendered a sense of shared responsibility and power, whereas a directive approach was experienced as more controlling, with the psychologist seen as the holder of power.

In particular, it seemed that the  changing  nature  of  the  psychologist’s   approach was especially unsettling, generating an overall sense of confusion, frustration and mistrust. Whereas initial interactions with the psychologist appeared to dispel pre-existing fears about the assessment process, the approach adopted during the testing phase only worked to reignite such anxieties.

In reality, it is the nature of the neuropsychological assessment process that influenced  the  psychologist’s  approach,  as  these  need  to  be  administered  in  a   standardised way, to ensure test validity. What is interesting in the present study is that whilst participants tried to rationalise the reason why the psychologist was more directive (i.e., noting the need to administer tests in a certain way), the

unpleasantness of their experience appeared to translate into them seeing the psychologist as responsible for their distress.

Other studies have explored experiences of professional relationships within the context of dementia assessment (Cahill et al., 2008; Manthorpe et al., 2013; Samsi et al., 2014; Willis et al., 2009). The majority of these studies however have focused on relationship experiences at a broader level, labeling these as either positive or negative. Cahill et al., (2008) reported that in general, participants portrayed relationships with professionals in a positive light. Feelings of confusion and anxiety were noted, however these were not specifically related to participants’ interactions with professionals. Willig et al., (2009) found a mixed reaction to professional  involvement,  with  some  participants  feeling  reassured  by  the  clinician’s   approach and others experiencing staff as insensitive to their needs. Other studies related daunting and disempowering experiences with the assessment process, not commenting  on  the  impact  of  the  professional’s  approach  within  this,  instead  noting   that professionals were viewed in a positive light overall (Manthorpe et al., 2013; Samsi et al., 2014). Whilst findings from the present study are consistent with previous research to some degree (i.e., suggesting that interactions with professional can influence assessment experience, and noting positive and negative experiences), the present study offers a new perspective on the role professionals play in shaping assessment experience.

The quality of the therapist-client relationship has long been noted as an essential foundation of effective therapy (Westbrook, Kennerley, & Kirk, 2010). Evidence relates the nature of this relationship to therapeutic outcome (Orlinsky,

Grawe, & Parks, 1994), with positive therapeutic alliance necessary for a good outcome (Wright & David, 1994). In relation to findings from the present study, this poses the question of how psychologists might foster a positive alliance, balancing the needs of the client with the requirement of administering neuropsychological assessments in a standardised way.