The Experience of Neuropsychological Assessment, Views of Clients with Neurodegenerative Conditions

Background: It is estimated there are currently 2.6 million people living with a progressive neurological condition in England (Neurological Alliance, 2014). Neuropsychological assessment to detect associated cognitive changes are a primary aspect of care, yet little is known about how neuropsychological assessment is experienced. Aims: This study captures the experience of undergoing a neuropsychological assessment from the viewpoint of clients with neurodegenerative conditions. Methodology: Semi-structured interviews were conducted with eight people with neurodegenerative conditions, who had recently undergone a neuropsychological assessment. The transcripts were analysed using Interpretative Phenomenological Analysis (IPA). Results: Four interrelated superordinate themes emerged from analysis: expectations of assessment, relationship with clinician, experience during testing and outcome of assessment. Overall, the experience of neuropsychological assessment was characterised as emotional and intense experience, yet most talked about the process as a positive experience. Participants hoped the assessment would objectively measure suspected or ‘hidden’ cognitive deficits, to increase understanding and help them cope with potential impairments. Participants reported the relationship with the assessing clinician was vital in determining their experience and helping them to withstand the emotional stresses of testing. Participants described diverse experiences during testing, from enjoying a sense of retained ability, to feelings of frustration, stress and disappointment at perceived ‘failure’. Various coping strategies were utilised to cope with the evoked emotions. The assessment environment was highlighted as important, with distractors felt to negatively impact performance. There was a sense the assessment provided objective ‘proof’ of the presence or absence of cognitive deficits, with accessible and prompt written feedback empowering participants to cope, adjust to difficulties and increasing relative’s awareness. Participants described mixed responses to feedback, from a therapeutic sense of relief, to feeling forced to confront the objective description of the impact of their condition. Despite participants reporting some negative aspects to testing, most emerged with a sense of having benefited from the experience. Implications and Conclusions: The findings of the study are considered in light of existing research, with consideration given to future research opportunities. The implications for clinical practice and training are discussed, including recommendations of pre-assessment meetings to prepare clients for the process (including the emotional aspects), and testing to be conducted by a familiar clinician, with whom the client has built rapport, and who can provide reassurance to offset the inherent uncertainty over performance. Providing an optimal environment, and ensuring feedback is timely, comprehensible and meaningful were also found to be of importance