https://www.mdu.se/

mdu.sePublications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Being ‘alone’ striving for belonging and adaption in a new reality: The experiences of spouse carers of persons with dementia
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. Dalarna University, Sweden; Karolinska Insitutet, Sweden. (PrILiv)ORCID iD: 0000-0003-2511-9502
Florida Atlantic University, USA.
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. (COMCARE)ORCID iD: 0000-0002-0407-9831
Dalarna University, Sweden.
2021 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 20, no 1, p. 273-290Article in journal (Refereed) Published
Abstract [en]

Background and aim

Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers’ experiences of caring for a partner with dementia, their everyday life as a couple and their support needs.

Methods

Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis.

Results

The analysis resulted in one overall theme Being ‘alone’ striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country; (2) Longing for a place for me and us; (3) Being a carer first and a person second; and (4) Being alone in a relationship.

Conclusions

The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple’s relationship for their mutual well-being.

Place, publisher, year, edition, pages
Sage Publications, 2021. Vol. 20, no 1, p. 273-290
Keywords [en]
spouse carer, dementia, persons with dementia, marriage, support, experience, qualitative content analysis
National Category
Health Sciences
Identifiers
URN: urn:nbn:se:mdh:diva-45514DOI: 10.1177/1471301219879343ISI: 000489393300001PubMedID: 31583888Scopus ID: 2-s2.0-85074599068OAI: oai:DiVA.org:mdh-45514DiVA, id: diva2:1359969
Available from: 2019-10-10 Created: 2019-10-10 Last updated: 2023-03-30Bibliographically approved

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full textPubMedScopus

Authority records

Marmstål Hammar, LenaSummer Meranius, Martina

Search in DiVA

By author/editor
Marmstål Hammar, LenaSummer Meranius, Martina
By organisation
Health and Welfare
In the same journal
Dementia
Health Sciences

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 78 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf