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A comparison of spouse and non-spouse carers of people with dementia : a descriptive analysis of Swedish national survey data

Johansson, Marcus F. LU ; McKee, Kevin J. ; Dahlberg, Lena ; Williams, Christine L. ; Summer Meranius, Martina ; Hanson, Elizabeth ; Magnusson, Lennart ; Ekman, Björn LU and Marmstål Hammar, Lena (2021) In BMC Geriatrics 21(1).
Abstract

Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people... (More)

Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.

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author
; ; ; ; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Care provision, Dementia, Informal carer, Population study, Spouse carer, Sweden
in
BMC Geriatrics
volume
21
issue
1
article number
338
publisher
BioMed Central (BMC)
external identifiers
  • pmid:34078292
  • scopus:85107220762
ISSN
1471-2318
DOI
10.1186/s12877-021-02264-0
language
English
LU publication?
yes
id
42e790da-50c8-4d09-8425-9f34c4e641bf
date added to LUP
2021-06-18 10:39:47
date last changed
2024-04-06 05:12:45
@article{42e790da-50c8-4d09-8425-9f34c4e641bf,
  abstract     = {{<p>Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.</p>}},
  author       = {{Johansson, Marcus F. and McKee, Kevin J. and Dahlberg, Lena and Williams, Christine L. and Summer Meranius, Martina and Hanson, Elizabeth and Magnusson, Lennart and Ekman, Björn and Marmstål Hammar, Lena}},
  issn         = {{1471-2318}},
  keywords     = {{Care provision; Dementia; Informal carer; Population study; Spouse carer; Sweden}},
  language     = {{eng}},
  month        = {{12}},
  number       = {{1}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{BMC Geriatrics}},
  title        = {{A comparison of spouse and non-spouse carers of people with dementia : a descriptive analysis of Swedish national survey data}},
  url          = {{http://dx.doi.org/10.1186/s12877-021-02264-0}},
  doi          = {{10.1186/s12877-021-02264-0}},
  volume       = {{21}},
  year         = {{2021}},
}