Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline
Background: The Nordic welfare states have been called the ‘caring states’. However, increasingly, less money is spent on long-term care for older persons than on care for younger persons. Additionally, a strong de-institutionalisation of care coupled with an ageing at home ideology means older pers...
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Foundation of Nursing Studies
2020
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ftdoajarticles:oai:doaj.org/article:300dc96fef824d3980b663071c5b84f8 2023-05-15T16:49:06+02:00 Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline Mai Camilla Munkejord Olga Asrun Stefansdottir Eydis Kristin Sveinbjarnardottir 2020-03-01T00:00:00Z https://doi.org/10.19043/ipdj.10Suppl.005 https://doaj.org/article/300dc96fef824d3980b663071c5b84f8 EN eng Foundation of Nursing Studies https://www.fons.org/library/journal/volume10-suppl/article5 https://doaj.org/toc/2046-9292 doi:10.19043/ipdj.10Suppl.005 2046-9292 https://doaj.org/article/300dc96fef824d3980b663071c5b84f8 International Practice Development Journal, Vol 10, Iss Suppl, Pp 1-11 (2020) care partner couple-centred care dementia family care iceland norway Medicine R article 2020 ftdoajarticles https://doi.org/10.19043/ipdj.10Suppl.005 2022-12-31T08:11:46Z Background: The Nordic welfare states have been called the ‘caring states’. However, increasingly, less money is spent on long-term care for older persons than on care for younger persons. Additionally, a strong de-institutionalisation of care coupled with an ageing at home ideology means older persons are expected to remain in their own home, even when they are frail and in need of comprehensive care. As a result, family members, particularly older women, are increasingly expected to take on caring roles, sometimes at the expense of their own health and wellbeing. Aim: The aim of this article is to examine the experiences of older women caring for a spouse living with cognitive decline in a Nordic context. Methods: A qualitative study was designed, in which 11 women in Iceland and Norway were interviewed in their own homes about their past and current experiences as care partners. Findings: Our participants reported that despite receiving home-based care services from the municipality, living with a husband with cognitive decline consisted of constantly being on the alert and assisting with various practicalities. It entailed being woken up night after night, always having to repeat the same bits of conversation, dealing with accusations of infidelity, episodes of aggression, and sometimes hallucinations, violence and fear. The women needed more information, more assistance and time away from care, and emotional and psychological support. Conclusions and implications for practice: The care partners were not treated as persons with their own care needs, and their voices were not heard. A relational person-centred approach in home-based elderly care is needed, placing the couple, not the individual, at the core of service provision. A tool for systematic collaboration between home care services and families should be developed so that both partners’ needs may be met in a more coherent and holistic way. Article in Journal/Newspaper Iceland Directory of Open Access Journals: DOAJ Articles Norway International Practice Development Journal 10 Suppl 1 11 |
institution |
Open Polar |
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Directory of Open Access Journals: DOAJ Articles |
op_collection_id |
ftdoajarticles |
language |
English |
topic |
care partner couple-centred care dementia family care iceland norway Medicine R |
spellingShingle |
care partner couple-centred care dementia family care iceland norway Medicine R Mai Camilla Munkejord Olga Asrun Stefansdottir Eydis Kristin Sveinbjarnardottir Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline |
topic_facet |
care partner couple-centred care dementia family care iceland norway Medicine R |
description |
Background: The Nordic welfare states have been called the ‘caring states’. However, increasingly, less money is spent on long-term care for older persons than on care for younger persons. Additionally, a strong de-institutionalisation of care coupled with an ageing at home ideology means older persons are expected to remain in their own home, even when they are frail and in need of comprehensive care. As a result, family members, particularly older women, are increasingly expected to take on caring roles, sometimes at the expense of their own health and wellbeing. Aim: The aim of this article is to examine the experiences of older women caring for a spouse living with cognitive decline in a Nordic context. Methods: A qualitative study was designed, in which 11 women in Iceland and Norway were interviewed in their own homes about their past and current experiences as care partners. Findings: Our participants reported that despite receiving home-based care services from the municipality, living with a husband with cognitive decline consisted of constantly being on the alert and assisting with various practicalities. It entailed being woken up night after night, always having to repeat the same bits of conversation, dealing with accusations of infidelity, episodes of aggression, and sometimes hallucinations, violence and fear. The women needed more information, more assistance and time away from care, and emotional and psychological support. Conclusions and implications for practice: The care partners were not treated as persons with their own care needs, and their voices were not heard. A relational person-centred approach in home-based elderly care is needed, placing the couple, not the individual, at the core of service provision. A tool for systematic collaboration between home care services and families should be developed so that both partners’ needs may be met in a more coherent and holistic way. |
format |
Article in Journal/Newspaper |
author |
Mai Camilla Munkejord Olga Asrun Stefansdottir Eydis Kristin Sveinbjarnardottir |
author_facet |
Mai Camilla Munkejord Olga Asrun Stefansdottir Eydis Kristin Sveinbjarnardottir |
author_sort |
Mai Camilla Munkejord |
title |
Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline |
title_short |
Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline |
title_full |
Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline |
title_fullStr |
Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline |
title_full_unstemmed |
Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline |
title_sort |
who cares for the carer? the suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline |
publisher |
Foundation of Nursing Studies |
publishDate |
2020 |
url |
https://doi.org/10.19043/ipdj.10Suppl.005 https://doaj.org/article/300dc96fef824d3980b663071c5b84f8 |
geographic |
Norway |
geographic_facet |
Norway |
genre |
Iceland |
genre_facet |
Iceland |
op_source |
International Practice Development Journal, Vol 10, Iss Suppl, Pp 1-11 (2020) |
op_relation |
https://www.fons.org/library/journal/volume10-suppl/article5 https://doaj.org/toc/2046-9292 doi:10.19043/ipdj.10Suppl.005 2046-9292 https://doaj.org/article/300dc96fef824d3980b663071c5b84f8 |
op_doi |
https://doi.org/10.19043/ipdj.10Suppl.005 |
container_title |
International Practice Development Journal |
container_volume |
10 |
container_issue |
Suppl |
container_start_page |
1 |
op_container_end_page |
11 |
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1766039172230938624 |