Embarking on a memory assessment voices of older persons living with memory impairment

Abstract

Aim To describe older persons who had commenced a memory assessment, experiences of living with memory impairment and related symptoms. Background Persons with subjective memory impairment are two times more likely to develop dementia over the years than their peers. Older persons seldom seek help from primary health care clinics solely for subjective memory impairment. Of those who seek help, it can take up to 35 months from the person experiencing initial symptoms to referral to a memory clinic. Further research is needed regarding how older persons live with memory impairment with related symptoms before they receive a memory diagnosis. Method A qualitative study with 23 participants who had commenced a memory assessment in primary care. Semi-structured interviews were held. During the interviews, the Neuropsychiatric Inventory was completed and discussed with the participants. Interview data were analysed using Interpretive Description. Results The results are presented under four themes: Conflicting views about the situation, Unveiling the presence of neuropsychiatric symptoms, Compensating with external and internal strategies to recall and Worrying about self and future. Persons with memory impairment were encouraged by family members or others to seek a memory assessment. Few persons were self-referred as memory impairment was often seen as a part of aging. Polarised viewpoints existed within the families regarding the impact of memory impairment on daily life. The presence of neuropsychiatric symptoms appeared unexplored in the participants seeking a memory assessment. In this study, the majority of participants experienced neuropsychiatric symptoms at the time of contact for a memory assessment. Conclusions Memory problems experienced were often viewed by the person as being part of an aging process. The presence of neuropsychiatric symptoms was not acknowledged as being connected to memory impairment. Contextualising ‘memory impairment’ as a part of a ‘cognitive process’ may help the person in identifying the presence of neuropsychiatric symptoms.

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

“…Older persons who were informed about potential benefits and risks associated with a diagnosis of Alzheimer's disease [AD] were less enthusiastic about commencing an assessment and receiving a diagnosis (Robinson et al, 2014). In a previous study by the authors, older persons described that they were often encouraged by others to commence a cognitive assessment, conflicting views existed within the families about the impact cognitive impairment had on daily life (Tyrrell et al, 2021).…”

“…Despite knowledge about the negative impact of NPS on persons with dementia and their families, symptoms are under-identified in the cognitive assessment process (Braun et al, 2019). In a previous study by the authors, 23 older persons who had commenced a cognitive assessment were interviewed, 16 of 23 self-reported the presence of one to four NPS (Tyrrell et al, 2021). This study aimed to capture the experiences, of the same persons, after completing the cognitive assessment and follow-up on previously reported NPS.…”

“…A total of 31 older persons were approached to join the project, 23 participants met the inclusion criteria and commenced the assessment (Tyrrell et al, 2021), and of those, 18 completed the cognitive assessment process and were therefore included in the present study (Table 1). The remaining five persons, who had started but not completed the cognitive assessment, due to medical reasons or other, were consequently not interviewed.…”

“…Interview questions were posed from a semi-structured interview guide which focused on participants' experiences of a cognitive assessment, receiving a cognitive diagnosis and the presence of NPS related to cognitive impairment. Applying a similar format to our previous study (Tyrrell et al, 2021), the Neuropsychiatric Inventory-Nursing Home version [NPI-NH] (Cummings et al, 1994) was presented to the participants during the interview. We used the NPI as a complement to a question in the interview guide pertaining to if participants had developed new symptoms which they could relate to their cognitive impairment.…”

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

“…Family members anticipate that a cognitive assessment can help them gain a greater understanding of the person’s situation and receive validation of symptoms observed ( Morgan et al, 2014 ). Conflicting views can exist within families concerning the necessity of seeking medical care and the impact the cognition impairment has on daily family life ( Tyrrell et al, 2021b ). Family members often describe struggling to navigate the care system ( Prorok et al, 2017 ).…”