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Being 'alone' striving for belonging and adaption in a new reality: The experiences of spouse carers of persons with dementia
Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska Insitute, Mälardalen University.ORCID iD: 0000-0003-2511-9502
Florida Atlantic University, USA.
Mälardalen University.
Dalarna University, School of Education, Health and Social Studies, Social Work.ORCID iD: 0000-0002-8795-7555
2019 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, article id 1471301219879343Article in journal (Refereed) Epub ahead of print
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
2019. article id 1471301219879343
Keywords [en]
dementia, experience, marriage, persons with dementia, qualitative content analysis, spouse carer, support
National Category
Nursing
Research subject
Health and Welfare
Identifiers
URN: urn:nbn:se:du-31006DOI: 10.1177/1471301219879343ISI: 000489393300001PubMedID: 31583888Scopus ID: 2-s2.0-85074599068OAI: oai:DiVA.org:du-31006DiVA, id: diva2:1362588
Available from: 2019-10-21 Created: 2019-10-21 Last updated: 2019-12-06Bibliographically approved

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