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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Online Access: | https://hdl.handle.net/20.500.11815/3261 https://doi.org/10.19043/ipdj.10suppl.005 |
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ftopinvisindi:oai:opinvisindi.is:20.500.11815/3261 2024-04-07T07:53:35+00:00 Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline Munkejord, Mai Camilla Stefánsdóttir, Olga Ásrún Sveinbjarnardóttir, Eydís Kr Faculty of Occupational Therapy 2020-03-18 11 475137 https://hdl.handle.net/20.500.11815/3261 https://doi.org/10.19043/ipdj.10suppl.005 en eng International Practice Development Journal; 10() Munkejord , M C , Stefánsdóttir , O Á & Sveinbjarnardóttir , E K 2020 , ' Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline ' , International Practice Development Journal , vol. 10 . https://doi.org/10.19043/ipdj.10suppl.005 2046-9292 51153481 1f01e73b-1ea0-42f6-8e20-d981dcf0ad5d unpaywall: 10.19043/ipdj.10suppl.005 https://hdl.handle.net/20.500.11815/3261 doi:10.19043/ipdj.10suppl.005 info:eu-repo/semantics/openAccess Aldraðir Umönnun Elliglöp Family caregivers Elderly Dementia Gender /dk/atira/pure/researchoutput/researchoutputtypes/contributiontojournal/article 2020 ftopinvisindi https://doi.org/20.500.11815/326110.19043/ipdj.10suppl.005 2024-03-11T00:17:14Z 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. Peer reviewed Article in Journal/Newspaper Iceland Opin vísindi (Iceland) Norway International Practice Development Journal 10 Suppl 1 11 |
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Opin vísindi (Iceland) |
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Aldraðir Umönnun Elliglöp Family caregivers Elderly Dementia Gender |
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Aldraðir Umönnun Elliglöp Family caregivers Elderly Dementia Gender Munkejord, Mai Camilla Stefánsdóttir, Olga Ásrún Sveinbjarnardóttir, Eydís Kr Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline |
topic_facet |
Aldraðir Umönnun Elliglöp Family caregivers Elderly Dementia Gender |
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. Peer reviewed |
author2 |
Faculty of Occupational Therapy |
format |
Article in Journal/Newspaper |
author |
Munkejord, Mai Camilla Stefánsdóttir, Olga Ásrún Sveinbjarnardóttir, Eydís Kr |
author_facet |
Munkejord, Mai Camilla Stefánsdóttir, Olga Ásrún Sveinbjarnardóttir, Eydís Kr |
author_sort |
Munkejord, Mai Camilla |
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 |
publishDate |
2020 |
url |
https://hdl.handle.net/20.500.11815/3261 https://doi.org/10.19043/ipdj.10suppl.005 |
geographic |
Norway |
geographic_facet |
Norway |
genre |
Iceland |
genre_facet |
Iceland |
op_relation |
International Practice Development Journal; 10() Munkejord , M C , Stefánsdóttir , O Á & Sveinbjarnardóttir , E K 2020 , ' Who cares for the carer? The suffering, struggles and unmet needs of older women caring for husbands living with cognitive decline ' , International Practice Development Journal , vol. 10 . https://doi.org/10.19043/ipdj.10suppl.005 2046-9292 51153481 1f01e73b-1ea0-42f6-8e20-d981dcf0ad5d unpaywall: 10.19043/ipdj.10suppl.005 https://hdl.handle.net/20.500.11815/3261 doi:10.19043/ipdj.10suppl.005 |
op_rights |
info:eu-repo/semantics/openAccess |
op_doi |
https://doi.org/20.500.11815/326110.19043/ipdj.10suppl.005 |
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International Practice Development Journal |
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10 |
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Suppl |
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1 |
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11 |
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