Voices to remember : persons’ and family members’ experiences of living with neurocognitive disorders and related symptoms

Persons with cognitive impairment are often encouraged by society and family to seek a cognitive assessment and receive a timely dementia diagnosis (dementia is also known as a major neurocognitive disorder). A cognitive assessment can help recognise possible reversable causes of cognitive symptoms and/or the presence of other neurocognitive disorders or diseases. It can take up to three years from the time a person experiences the first cognitive symptom, to contacting health care and referral for a cognitive assessment. Most persons with dementia develop neuropsychiatric symptoms such as; hallucinations, apathy, agitation during the course of the disease. The presence of these symptoms often impacts negatively on the person and family members and are trigger factors for admissions to residential care. These symptoms are often under-identified in health care. Knowledge gaps exist about persons’ experiences of a cognitive assessment and neuropsychiatric symptoms early in the disease trajectory. Many persons with dementia reside in their own homes with a family member. Further knowledge is required regarding the person’s and family members’ experiences of the situation. The aim of this doctoral thesis was to describe older persons’ and family members’ experiences of living with neurocognitive disorders and related symptoms in a community setting.

Study I: an interview study with 23 persons with cognitive impairment who had commenced a cognitive assessment. An interpretive description data-analysis was carried out. The findings are presented under four themes; Conflicting views between the person and their family about severity of the situation, Identifying the presence of neuropsychiatric symptoms, Compensating strategies used to remember and Worries about self and what the future holds. Study II: a follow-up interview study (to study I) with 18 persons who had completed a cognitive assessment in a polyclinical setting. Interpretive description was used to analyse the interview data. The findings formed two main themes. The first theme focuses on levels of trust in the process and the second theme about attempts to understand and make sense of a neurocognitive diagnosis. Study III: an interview study with 14 spouses to partners with dementia and neuropsychiatric symptoms. The persons with dementia were reported as having between five to eight neuropsychiatric symptoms at the same time. The theme “Living on the edge, lacking support and time for self” represented the findings of this study. Study IV: an interview study with nine family members to persons with frontotemporal dementia and neuropsychiatric symptoms. Persons with frontotemporal dementia were reported as having between four to eight co-existing neuropsychiatric symptoms. Two themes emerged from the data; “Living with a well-known stranger and Coping and overstepping social norms.”

List of scientific papers

I. Tyrrell, M., Religa, D., Fossum, B., Hedman, R., Skovdahl, K., & Hillerås, P. (2020). Embarking on a memory assessment – Voices of older persons living with memory impairment. [Accepted]
https://doi.org/10.1177/1471301220910637

II. Tyrrell, M., Hedman, R., Fossum, B., Skovdahl, K., Religa, D., & Hillerås, P. (2020). Feeling valued versus abandoned – Voices of persons who have completed a cognitive assessment. [Submitted]

III. Tyrrell, M., Hillerås, P., Skovdahl, K., Fossum, B., & Religa, D. (2017). Voices of spouses living with partners with neuropsychiatric symptoms related to dementia. Dementia. 18(3), 903-919.
https://doi.org/10.1177/1471301217693867

IV. Tyrrell, M., Fossum, B., Skovdahl, K., Religa, D. & Hillerås, P. (2019). Living with a well-known stranger: Voices of family members to older persons with frontotemporal dementia. International Journal of Older People Nursing. 15(1), e12264.
https://doi.org/10.1111/opn.12264