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Tyrrell, M., Jönsson, A., Södergren, U., Hedman, R., Sandberg, J. & Gransjön Craftman, Å. (2024). Insights from health and social care professionals supporting children and young adults with a parent diagnosed with dementia: An interview study. Health & Social Care in the Community, 2024(1)
Open this publication in new window or tab >>Insights from health and social care professionals supporting children and young adults with a parent diagnosed with dementia: An interview study
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2024 (English)In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 2024, no 1Article in journal (Refereed) Published
Abstract [en]

Dementia is recognised as one of the major global health and social care challenges of present times. When the onset of dementia occurs in midlife, there is an increased possibility that there are children and young adults involved who are dependent on the parent concerned. The aim of the study was to describe health and social care professionals’ experiences of identifying and supporting children and young adults with a parent with dementia. A qualitative descriptive approach was carried out with individual interviews of health and social care professionals, using a semistructured interview guide. Thirteen participants in rural and urban areas in Sweden were interviewed. The overarching theme, advocating a forgotten group with three categories were identified. They combine and reflect health and social care professionals’ experiences of identifying and supporting children and young adults with a parent with dementia. Health and social care professionals who encountered children and young adults with a parent with dementia described how they were not sufficiently trained in supporting this group and identified a general shortage of available appropriate support services. The children and young adults were also described as a forgotten and overlooked group in need of affirmation and support in a more systematic way.

National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5389 (URN)10.1155/2024/8886299 (DOI)
Available from: 2024-06-25 Created: 2024-06-25 Last updated: 2024-06-25Bibliographically approved
Kabir, Z. N., Tyrrell, M., Konradsen, H., Craftman, Å., Joshi, N., Gupta, M. K., . . . Bhardwaj, P. (2024). mHealth based intervention by social care professionals to support family caregivers to persons with dementia living at home in Sweden (Caregiver Connect): A randomized controlled trial. BMC Geriatrics, 24, Article ID 519.
Open this publication in new window or tab >>mHealth based intervention by social care professionals to support family caregivers to persons with dementia living at home in Sweden (Caregiver Connect): A randomized controlled trial
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2024 (English)In: BMC Geriatrics, E-ISSN 1471-2318, Vol. 24, article id 519Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: The majority of persons with dementia in Sweden reside in their own homes with support from family members. Approximately, 12% of persons with dementia have immigrant background. Within the next 20 years, the number of persons with dementia who are non-ethnic Swedes is said to double. Family caregivers with immigrant backgrounds are noted to receive less support in the community than ethnic Swedes and rate their health status lower than ethnic Swedish peers. The Swedish National Board of Health and Welfare have highlighted the importance of follow-up support for family caregivers with immigrant backgrounds as there is a recognized gap in research and available information tailored to meet the needs of this group.

PURPOSE OF THE STUDY: The purpose of the study is to test effectiveness of an mHealth based intervention through which community social workers can improve caregiving competence of non-European immigrant family caregivers of people with dementia living at home in Sweden. The overarching aim is to reduce caregiver burden and depressive symptoms, and improve quality of life.

METHODS: A randomized controlled trial (RCT) including wait list control group will be performed consisting of an intervention group (A, n = 44) and a wait list control group (B, n = 44), totaling a sample size of 88. On completion of the 10-weeks long intervention in the intervention group, the intervention will be delivered to group B. Effect of the intervention will be analyzed between and within groups over time. The content of the educational component of the intervention is inspired by the iSupport manual developed by the World Health Organization. The contents, in the form of a booklet, aims to equip the family caregivers with structured information on understanding dementia as a condition and its management at home, including self-care guidance designed specifically for family caregivers themselves.

DISCUSSION: Similar telephone-delivered intervention studies targeted for family caregivers to persons with dementia are ongoing in Malaysia and will start in India using the same booklet adapted to the local context. These studies will provide evidence on the effectiveness of using digital technologies to deliver support to those who may not be reached or adequately served by the traditional healthcare system.

TRIAL REGISTRATION: ISRCTN registry, Registration number ISRCTN64235563.

Keywords
Dementia, Dementia care, Family caregiving, Family member, Family research, Family support, Immigrant, Neurocognitive disorder, mHealth
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5388 (URN)10.1186/s12877-024-05106-x (DOI)38877412 (PubMedID)
Available from: 2024-06-25 Created: 2024-06-25 Last updated: 2024-07-04Bibliographically approved
Westerbotn, M., Monfors, F., Reusser, J. & Tyrrell, M. (2023). Promoting health and preventing malnutrition among children in rural Bangladesh: A qualitative study. Nursing Open, 10(8), 5693-5700
Open this publication in new window or tab >>Promoting health and preventing malnutrition among children in rural Bangladesh: A qualitative study
2023 (English)In: Nursing Open, E-ISSN 2054-1058, Vol. 10, no 8, p. 5693-5700Article in journal (Refereed) Published
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.

Keywords
Bangladesh, Children, Health promotion, Healthcare professional's experience, Prevention
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:shh:diva-4923 (URN)10.1002/nop2.1815 (DOI)37199013 (PubMedID)
Available from: 2023-05-26 Created: 2023-05-26 Last updated: 2023-08-23Bibliographically approved
Tyrrell, M., Hillerås, P. & Hedman, R. (2022). Living in uncertainty while a partner is undergoing a cognitive assessment: Voices of female spouses. In: : . Paper presented at The 35th Global Conference of Alzheimer’s Disease International (ADI), London, Storbritannien, 9-11 juni 2022 (digital konferens).
Open this publication in new window or tab >>Living in uncertainty while a partner is undergoing a cognitive assessment: Voices of female spouses
2022 (English)Conference paper, Poster (with or without abstract) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4633 (URN)
Conference
The 35th Global Conference of Alzheimer’s Disease International (ADI), London, Storbritannien, 9-11 juni 2022 (digital konferens)
Available from: 2022-10-31 Created: 2022-10-31 Last updated: 2022-10-31Bibliographically approved
Hedman, R., Hillerås, P. & Tyrrell, M. (2022). Living in uncertainty while a spouse is undergoing a cognitive assessment: Voices of women care partners. Dementia, 21(8), 2631-2646, Article ID 14713012221128448.
Open this publication in new window or tab >>Living in uncertainty while a spouse is undergoing a cognitive assessment: Voices of women care partners
2022 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 21, no 8, p. 2631-2646, article id 14713012221128448Article in journal (Refereed) Published
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.

Keywords
Care partner, Caregiver, Cognitive assessment, Cognitive impairment, Dementia, Experience, Gender, Neuropsychiatric symptoms, Uncertainty, Wives, Women
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4612 (URN)10.1177/14713012221128448 (DOI)36131252 (PubMedID)
Available from: 2022-10-11 Created: 2022-10-11 Last updated: 2023-01-03Bibliographically approved
Tyrrell, M., Hedman, R., Fossum, B., Skovdahl, K., Religa, D. & Hillerås, P. (2021). Feeling valued versus abandoned: Voices of persons who have completed a cognitive assessment. International Journal of Older People Nursing, 16(6), Article ID e12403.
Open this publication in new window or tab >>Feeling valued versus abandoned: Voices of persons who have completed a cognitive assessment
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2021 (English)In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 16, no 6, article id e12403Article in journal (Refereed) Published
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.

Keywords
Cognitive assessment, Cognitive impairment, Dementia, Experiences, Mild, Neuropsychiatric symptoms
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4171 (URN)10.1111/opn.12403 (DOI)34231964 (PubMedID)
Available from: 2021-08-11 Created: 2021-08-11 Last updated: 2021-12-08Bibliographically approved
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. Dementia, Article ID 1471301220910637.
Open this publication in new window or tab >>Embarking on a memory assessment voices of older persons living with memory impairment
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2020 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, article id 1471301220910637Article in journal (Refereed) Epub ahead of print
Keywords
experiences, interviews, memory impairment, neuropsychiatric symptoms, primary care
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-3660 (URN)10.1177/1471301220910637 (DOI)32188280 (PubMedID)
Available from: 2020-04-22 Created: 2020-04-22 Last updated: 2020-06-02Bibliographically approved
Tyrrell, M., Fossum, B., Skovdahl, K., Religa, D. & Hillerås, P. (2020). Living with a well-known stranger: Voices of family members to older persons with frontotemporal dementia. International Journal of Older People Nursing, 15(1), Article ID e12264.
Open this publication in new window or tab >>Living with a well-known stranger: Voices of family members to older persons with frontotemporal dementia
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2020 (English)In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 15, no 1, article id e12264Article in journal (Refereed) Published
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.

Keywords
content analysis, dementia, family
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-3480 (URN)10.1111/opn.12264 (DOI)31577392 (PubMedID)
Available from: 2019-10-24 Created: 2019-10-24 Last updated: 2020-12-11Bibliographically approved
Tyrrell, M. (2020). Voices to remember: Persons' and family members' experiences of living with neurocognitive disorders and related symptoms. (Doctoral dissertation). Stockholm: Karolinska Institutet
Open this publication in new window or tab >>Voices to remember: Persons' and family members' experiences of living with neurocognitive disorders and related symptoms
2020 (English)Doctoral 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.”

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet, 2020. p. 66
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-3622 (URN)978-91-7831-724-0 (ISBN)
Public defence
2020-03-06, Weitnersalen, Sophiahemmet Högskola, Valhallavägen 91, hus R, plan 2, Stockholm, 10:00 (English)
Opponent
Supervisors
Available from: 2020-03-11 Created: 2020-03-11 Last updated: 2020-06-02Bibliographically approved
Tyrrell, M., Hillerås, P., Skovdahl, K., Fossum, B. & Religa, D. (2019). Voices of spouses living with partners with neuropsychiatric symptoms related to dementia. Dementia, 18(3), 903-919, Article ID 1471301217693867.
Open this publication in new window or tab >>Voices of spouses living with partners with neuropsychiatric symptoms related to dementia
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2019 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 3, p. 903-919, article id 1471301217693867Article in journal (Refereed) Published
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.

Keywords
Community, Dementia, Neuropsychiatric symptoms, Spouses’/partners’ experiences
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-2631 (URN)10.1177/1471301217693867 (DOI)28385034 (PubMedID)
Available from: 2017-04-26 Created: 2017-04-26 Last updated: 2020-06-02Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-9589-2560

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