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  • 1.
    Hedman, Ragnhild
    et al.
    Sophiahemmet University.
    Hillerås, Pernilla
    Tyrrell, Marie
    Sophiahemmet University.
    Living in uncertainty while a spouse is undergoing a cognitive assessment: Voices of women care partners2022In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 21, no 8, p. 2631-2646, article id 14713012221128448Article in journal (Refereed)
    Abstract [en]

    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
    Sophiahemmet University.
    Att vårda äldre demenssjuka personer i eget boende: distriktsköterskors upplevelser2009Independent thesis Advanced level (degree of Master (One Year)), 10 credits / 15 HE creditsStudent thesis
  • 3.
    Tyrrell, Marie
    Sophiahemmet University.
    Voices to remember: Persons' and family members' experiences of living with neurocognitive disorders and related symptoms2020Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    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.”

  • 4.
    Tyrrell, Marie
    et al.
    Sophiahemmet University.
    Fossum, Bjöörn
    Sophiahemmet University.
    Religa, Dorota
    Skovdahl, Kirsti
    Hillerås, Pernilla
    Sophiahemmet University.
    Living with a well-known stranger2018Conference paper (Other academic)
  • 5.
    Tyrrell, Marie
    et al.
    Sophiahemmet University.
    Fossum, Bjöörn
    Sophiahemmet University.
    Skovdahl, Kirsti
    Religa, Dorota
    Hillerås, Pernilla
    Sophiahemmet University.
    Living with a well-known stranger: Voices of family members to older persons with frontotemporal dementia2020In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 15, no 1, article id e12264Article in journal (Refereed)
    Abstract [en]

    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.

  • 6.
    Tyrrell, Marie
    et al.
    Sophiahemmet University.
    Hedman, Ragnhild
    Sophiahemmet University.
    Fossum, Bjöörn
    Sophiahemmet University.
    Skovdahl, Kirsti
    Religa, Dorota
    Hillerås, Pernilla
    Sophiahemmet University.
    Feeling valued versus abandoned: Voices of persons who have completed a cognitive assessmentManuscript (preprint) (Other academic)
  • 7.
    Tyrrell, Marie
    et al.
    Sophiahemmet University.
    Hedman, Ragnhild
    Sophiahemmet University.
    Fossum, Bjöörn
    Sophiahemmet University.
    Skovdahl, Kirsti
    Religa, Dorota
    Hillerås, Pernilla
    Sophiahemmet University.
    Feeling valued versus abandoned: Voices of persons who have completed a cognitive assessment2021In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 16, no 6, article id e12403Article in journal (Refereed)
    Abstract [en]

    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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  • 8.
    Tyrrell, Marie
    et al.
    Sophiahemmet University.
    Hillerås, Pernilla
    Hedman, Ragnhild
    Sophiahemmet University.
    Living in uncertainty while a partner is undergoing a cognitive assessment: Voices of female spouses2022Conference paper (Other academic)
  • 9.
    Tyrrell, Marie
    et al.
    Sophiahemmet University.
    Hillerås, Pernilla
    Sophiahemmet University.
    Skovdahl, Kirsti
    Fossum, Bjöörn
    Sophiahemmet University.
    Voices of Spouses living with partners with behavioural and psycological symtoms related to dementia2016Conference paper (Other academic)
    Abstract [en]

    Background: Persons with dementia, whdo reside in their own homes, are often cared for by family members or friends. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory. The quality of life for both the person with behavioural and psychological symptoms and their careers are affected, increasing both suffering and risk for hospitalisation. Family careers to persons with dementia have identified behavioural changes as more distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience behavioural and psychological symptoms in a community setting.

    AIM: To describe spouses’ experiences of living with partners who have behavioural and psychological symptoms related to dementia. Methods:Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included the completion of the NPI (Neuropsychiatric Inventory, Cummings, 1994). Interview data was analysed using content analysis. Results:(Preliminary) Spouses identified that partners with dementia had on average five to eight co-existing NPI symptoms. Frequency, severity and distress varied. The behavioural and psychological symptoms highlighted were within three of four possible symptom domains; Behaviour, Psychosis and Mood. From the narrative data four main categories emerged; Support, Coping, Vulnerability and domestic violence AND Social isolation. Conclusions: A large proportion of persons with dementia reside in the  community. Support offered to persons with dementia and their families should have a person-centered approach meeting individual needs. A greater awareness is required regarding welfare and safety of persons with dementia and their partners in a community setting.

  • 10.
    Tyrrell, Marie
    et al.
    Sophiahemmet University.
    Hillerås, Pernilla
    Sophiahemmet University.
    Skovdahl, Kirsti
    Fossum, Bjöörn
    Sophiahemmet University.
    Religa, Dorota
    Voices of spouses living with partners with neuropsychiatric symptoms related to dementia2019In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 3, p. 903-919, article id 1471301217693867Article in journal (Refereed)
    Abstract [en]

    Persons with dementia, who reside in their own homes, are often cared for by family members. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory also known as neuropsychiatric symptoms. Quality of life for both the person with neuropsychiatric symptoms and their careers are affected, increasing suffering and risk for hospitalisation and admission to long-term residential care. Family careers to persons with dementia have identified behavioural changes as more distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience neuropsychiatric symptoms in a community setting. The aim was to describe spouses' experiences of living with partners who have developed neuropsychiatric symptoms related to dementia in a community setting. Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included completion of the neuropsychiatric inventory. Interview data were analysed using a content analysis approach. The results showed that spouses identified in the neuropsychiatric inventory that partners with dementia had on average five to eight co-existing symptoms. Frequency, severity and distress varied. From the narrative data, the theme living on the edge lacking support and time for self, emerged. The findings of this study suggest that support offered to persons with dementia and their spouses should have a person-centred approach meeting individual needs. Safety and welfare of persons with dementia and their spouses residing in their own homes may be jeopardised in the presence of neuropsychiatric symptoms. A greater awareness is required in the community regarding the well-being of these persons.

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  • 11.
    Tyrrell, Marie
    et al.
    Sophiahemmet University.
    Religa, Dorota
    Fossum, Bjöörn
    Sophiahemmet University.
    Hedman, Ragnhild
    Sophiahemmet University.
    Skovdahl, Kirsti
    Hillerås, Pernilla
    Sophiahemmet University.
    Embarking on a memory assessment voices of older persons living with memory impairment2020In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, article id 1471301220910637Article in journal (Refereed)
  • 12.
    Tyrrell, Marie
    et al.
    Sophiahemmet University.
    Religa, Dorota
    Fossum, Bjöörn
    Sophiahemmet University.
    Hedman, Ragnhild
    Sophiahemmet University.
    Skovdahl, Kirsti
    Hillerås, Pernilla
    Sophiahemmet University.
    Embarking on a memory assessment: Voices of older persons living with memory impairmentManuscript (preprint) (Other academic)
  • 13.
    Westerbotn, Margareta
    et al.
    Sophiahemmet University.
    Monfors, Felicia
    Sophiahemmet University.
    Reusser, Julia
    Sophiahemmet University.
    Tyrrell, Marie
    Sophiahemmet University.
    Promoting health and preventing malnutrition among children in rural Bangladesh: A qualitative study2023In: Nursing Open, E-ISSN 2054-1058, Vol. 10, no 8, p. 5693-5700Article in journal (Refereed)
    Abstract [en]

    AIM: To describe community healthcare professionals' experiences of preventing malnutrition among children in rural Bangladesh.

    METHODS: A descriptive qualitative study with a total of seven healthcare professionals were recruited from a non-governmental organisation in rural Bangladesh. Individual in-depth interviews were conducted in November 2018 using a semi-structured interview guide. The audio-recorded interviews were transcribed verbatim and analysed manually using content analysis.

    RESULTS: The data analysis resulted in two main categories: Implementation and practices in preventing malnutrition and Challenges in working with prevention of malnutrition. Education was considered an important and essential preventative intervention. Healthcare professionals faced challenges in their work in relation to socio-cultural and climate factors. The findings indicate how healthcare professional identified the need for increased knowledge and resources in the community to promote nutritional health in children.

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