Being 'alone' striving for belonging and adaption in a new reality - The experiences of spouse carers of persons with dementia

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.

Automated summary

The study aimed to explore spouse carers' experiences of caring for partners with dementia, their support needs, and personal well-being, resulting in the overall theme of facing loneliness and adapting to a new reality. The findings suggest that care professionals need to be better trained to understand the unique needs of spouse carers, focusing on considering them as individuals separate from their caregiving role and emphasizing the importance of the couple's relationship for their well-being.