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- Hedman, Ragnhild, 1962-, et al.
(författare)
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Living in uncertainty while a spouse is undergoing a cognitive assessment : Voices of women care partners
- 2022
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Ingår i: Dementia. - : SAGE Publications. - 1471-3012 .- 1741-2684. ; 21:8, s. 2631-2646
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Women often support partners with cognitive symptoms during the assessment process and when they are receiving a cognitive diagnosis. Living with a partner with cognitive symptoms can be stressful; however, there is limited insights into the specific experiences of older women during the assessment process. Previous research indicates that there are gender differences in the experiences of spousal caregiving; however, further research is needed in regard to the experiences of men and women as care partners. Therefore, the aim of the present study was to describe women's experiences of living with a partner undergoing a cognitive assessment.METHODS: Semi-structured interviews were conducted with seven women when their male partners commenced a cognitive assessment and after the assessment had been completed. The interviews were analysed with abductive content analysis.FINDINGS: Uncertainty permeated the women's experiences. Antecedents, attributes and strategies to manage the uncertainty were described.CONCLUSION: The participants expressed informational and existential uncertainty when their partner underwent a cognitive assessment. A lack of knowledge regarding the assessment process and cognitive diagnoses, especially mild cognitive impairment, was identified. Further, there was a need to process existential uncertainty evoked by the situation.
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| 2. |
- Tyrrell, Marie, et al.
(författare)
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Embarking on a memory assessment voices of older persons living with memory impairment
- 2021
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 20:2, s. 717-733
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Tidskriftsartikel (refereegranskat)abstract
- AimTo describe older persons who had commenced a memory assessment, experiences of living with memory impairment and related symptoms.BackgroundPersons 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.MethodA 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.ResultsThe 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.ConclusionsMemory 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.
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| 3. |
- Tyrrell, Marie, et al.
(författare)
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Feeling valued versus abandoned : Voices of persons who have completed a cognitive assessment
- 2021
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Ingår i: International Journal of Older People Nursing. - : John Wiley & Sons. - 1748-3735 .- 1748-3743. ; 16:6
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Tidskriftsartikel (refereegranskat)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.
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| 4. |
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| 5. |
- Tyrrell, Marie, et al.
(författare)
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Living with a well-known stranger : Voices of family members to older persons with frontotemporal dementia
- 2020
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Ingår i: International Journal of Older People Nursing. - : Wiley. - 1748-3735 .- 1748-3743. ; 15:1
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To describe family members' experiences of living with persons with neuropsychiatric symptoms (NPS) related to frontotemporal dementia (FTD).BACKGROUND: The majority of persons with dementia during the disease trajectory develop NPS. Persons with FTD are likely to develop greater levels of NPS than persons with other types of dementias. Research-based knowledge regarding family members' experiences of living with persons with FTD and NPS is limited.METHODS: Nine family members of persons with FTD were interviewed. Interviews commenced with completion of the Neuropsychiatric Inventory (NPI). Upon completion of the NPI, questions were posed from an interview guide where study participants provided in-depth information about NPS identified. Interview data were analysed using qualitative content analysis.RESULTS: Interviewed family members highlighted that persons with FTD had developed between four and eight co-existing NPS. Irritability and disinhibition were the most common NPS, with variations in severity, frequency and distress. From the interview data, two themes emerged: Living with a well-known stranger and Coping and overstepping social norms.CONCLUSIONS: Living with a well-known stranger depicted a new co-existence with a loved one with changes in personality and behaviour, which were not inherent to the person or predictable any more. The presence of NPS can threaten the safety of the person with FTD and their family in real world and on social media. Support offered should focus on the person's physical and psychological needs, not on a diagnosis.IMPLICATIONS FOR PRACTICE: From a health care perspective it is important to see the person with FTD and their family as unique individuals with specific needs.
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| 6. |
- Tyrrell, Marie
(författare)
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Voices to remember : Persons' and family members' experiences of living with neurocognitive disorders and related symptoms
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.”
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