Finding out: moving on

Receiving the outcome of their assessment represented particularly pivotal point in participants’  neuropsychological assessment experience. Participants’   responses seemed influenced by the outcome they received and the way in which they made sense of this. Unique to this study was that fact that assessment outcomes differed. Receiving a diagnosis of dementia was associated with feelings of shock, resignation, and uncertainty about what the future might hold, consistent with previous research into dementia diagnosis experience (Aggarwal et al., 2003; Aminzadeh ey al., 2007; Gillies, 2000; Holst & Hallberg, 2003; Husband, 1999; MacQuarrie, 2005; Pratt & Wilkinson, 2001, 2003; Robinson et al., 2005). Those told their difficulties were associated with psychological factors as opposed to dementia, experienced a huge sense of relief. The researcher is not aware of any studies that have explored the effects of receiving an alternative diagnosis to dementia. Relief associated with learning that problems could be attributed to psychological factors can be understood within the framework of illness

representations theory (Leventhal, Nerenz, & Steele, 1984). This model proposes that the way people appraise and respond to a health threat is influenced by their health beliefs and information derived from symptoms and illness stereotypes. This

suggests that participants perceived psychological problems as much less threatening than the prospect of having dementia.

Expectations were that the assessment outcome would provide participants with a definitive explanation of the reason for their experienced difficulties. Inconclusive results left participants with unresolved questions, thus maintaining their uncertainty and confusion. For one participant, being told his results indicated no impairment was incongruent with his own sense of failure (“I  just  couldn’t  do  the  

lot of  it”,  Eric, p.4, line 66), and as such, instead of being reassured, his outcome

appeared to exacerbate his confusion and uncertainty. Research within the field of chronic illness is consistent with this idea that uncertainty has considerable impact on a person’s  ability  to  make  sense  of  their  situation  and  to  incorporate  changes   noticed into a redefined sense of self (Charmaz, 2000). For example, if people are unable  to  attach  meaning  to  their  experience  of  “illness”,  this  maintains  a  sense  of   uncertainty and vulnerability, leading to increased distress.

The neuropsychological assessment outcome also influenced the way in which participants attempted to adjust and move on in their lives. Coping strategies adopted seemed aimed at trying to achieve a positive sense of self and alleviate their distress. Those who received a diagnosis of dementia, spoke of adopting

compensating strategies aimed at directly managing problems experienced, such as planning ahead and using external aids, which appeared to enable them to maintain their sense of self as capable and in control. These findings show support to Lazarus and Folkman’s  (1984)  model  of  stress  and  coping,  which  suggests  that  coping   responses  are  influenced  by  an  individuals’  appraisal  of  the  stressor  and their ability

to cope. A number of studies have reported similar findings suggesting that people with dementia use a range of different strategies to manage the effects of dementia, including problem-focused strategies, such as using memory aids, and focusing on what can be achieved (Clare, 2002; Gillies, 2000, 2001; Lee, Roen, & Thornton, 2014; Menne, Kinney, & Morhardt, 2002; Ostwald, Duggleby, & Hepburn, 2002; Pearce, Clare, & Pistrang, 2002; Phinney, 1998; Preston, Marshall, & Bucks, 2007).

Finding out their problems were likely underpinned by psychological factors, appeared particularly reassuring for participants, resulting in them being more accepting of their difficulties and less self-critical. Perhaps highlighting how they were more easily able to integrate this new information into a changed sense of self.

For those who received inconclusive results warranting further investigation, moving on appeared by nature problematic, and they described a sense of being suspended  in  uncertainty.  Coping  by  “carrying  on  as  normal”,  seemed  aimed  at   trying to hold on to their prior self-concept, as a person who does not have dementia, consistent  with  Atchley’s  (1989)  theory of coping, which asserts that people attempt to manage the stress of uncertainty by maintaining continuity in their lives.

However maintaining continuity in the face of uncertainty is not always possible. For one participant, the uncertainty of not knowing, seemed to translate into her questioning  what  “normal”  was,  resulting in her feeling unsure how to react, thus maintaining her distress.

4.3 Methodological Considerations

4.3.1 Demonstrating quality

The quality and value of research is judged by how rigorously methods are conducted and whether findings are trustworthy and meaningful (Smith & Osborn, 2008). In qualitative research, aims are to develop an in-depth phenomenological understanding of individual experiences from the perspective of the person experiencing it. Therefore, traditional ‘nomothetic’  methods used for assessing validity and reliability in quantitative research, are considered too simplistic and rigid to effectively evaluate qualitative research (Barker, Pistrang, & Elliott, 2002). Instead, Smith et al. (2009) suggested that guidelines developed by Elliot et al. (1999) and Yardley (2000, 2008) provide more helpful and holistic criteria, which can applied to any qualitative research study, irrespective of the theoretical

orientation, and recommend either of these guidelines, for evaluating the quality of IPA studies. The way in which the current study fulfills these criteria is discussed in detail below:

4.3.1.1 Sensitivity to context. Sensitivity to context can be shown in a variety of ways: sensitivity to existing theoretical and empirical literature; sensitivity to  participants’  perspectives,  consideration  of  ethical  issues,  and  sensitivity  to  data   collected (Yardley, 2000). This study has demonstrated these qualities by providing a detailed review of theoretical and empirical literature in the introduction section. This allowed the researcher to identify gaps in current research and develop a set of research questions aimed at addressing this. Great care was also taken in designing the study, with emphasis placed on encouraging participants to express their views