• Lena Marmstål Hammar, Christine L Williams, Martina Summer Meranius, and Kevin McKee.
• School of Education, Health, and Social Studies, Dalarna University, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Insitute, Sweden; School of Health, Care, and Social Welfare, Mälardalen University, Sweden.
• Dementia (London). 2021 Jan 1; 20 (1): 273-290.

Background And AimSpouse 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.MethodsNine 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.ResultsThe 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.ConclusionsThe 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.

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