Feeling valued versus abandoned: Voices of persons who have completed a cognitive assessment

Abstract

Aim: To describe older persons' experiences of a cognitive assessment and possible neuropsychiatric symptoms [NPS] related to a neurocognitive diagnosis. Background: A cognitive assessment in primary care is offered to persons with suspected dementia with subsequent referral to a specialist clinic if required. The assessment process, with the likelihood of receiving a dementia diagnosis, is surrounded by uncertainty with long waiting times. Although NPS are common among persons with cognitive impairment persons are not routinely asked about these symptoms during a cognitive assessment. Method: Interviews were held with 18 participants who had completed a cognitive assessment. The Neuropsychiatric Inventory [NPI] was incorporated into one of the interview questions enabling participants to self-report NPS, if present. Interview data were analysed using Interpretive Description. Results: Two main themes were identified: a matter of trust and making sense of a cognitive diagnosis. Experiences of the assessment process ranged from feeling valued to abandoned with variations of trust in the process. A diagnosis of mild cognitive impairment was experienced as an abstract diagnosis devoid of follow-up support. A lack of preparedness for the assessment existed among participants. Some experienced the process as standardised. One half of participants self-reported the presence of one to four NPS, regardless of neurocognitive diagnosis. Irritability and depression were most common NPS identified. Conclusions: Experiences of a cognitive assessment varied from feeling valued by society to abandoned in the absence of follow-up support. The assessment was viewed as a standardised procedure failing to see the person behind the testing. Diagnosis disclosure conversations were experienced as diffuse with participants unprepared for a dementia diagnosis. The NPI enabled participants to identify and report the presence of NPS which otherwise could go undetected during the cognitive assessment, impacting on the person's well-being and daily life.

The Acceptability of post-stroke cognitive testing through the lens of the theory of acceptability, a qualitative study

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Living in uncertainty while a spouse is undergoing a cognitive assessment: Voices of women care partners

“…The present study is associated with two previous studies describing the experiences of 23 persons at the start and end of their medical assessment of cognitive impairment ( Tyrrell et al, 2021a ; Tyrrell et al., 2021b ). The patients’ family members, who accompanied them to the clinic, were also interviewed on both occasions concerning their experiences of supporting the person with cognitive impairment and of the assessment process.…”

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