Purpose Spouses of persons with dementia often take on caring responsibilities that can be overwhelming and negatively affect their well-being. To support the development of effective services and promote carer well-being, we aim to describe carer experiences and needs in everyday life.
Methods Semi-structured phone interviews were conducted with a convenience sample of 24 spouses caring for a partner with dementia in Sweden. The interviews explored experiences of caring for a partner with dementia. Interviews were analyzed with thematic analysis.
Results The analysis generated two themes: “Being consumed by caring” and “Longing to be seen and feel supported”. The first theme showed that spouse carers experience a transition from spouse to carer and feel confined in their new situation. The second showed that to be supported, spouse carers need to feel acknowledged in their situation, and formal care must meet their partner's needs, as carers' needs are enmeshed with those of their partners.
Conclusion Spouse carers of persons with dementia often feel trapped by caring responsibilities. To feel supported, they need to be acknowledged both as individuals and as part of a couple. Health and social care professionals should focus on maintaining spouses' sense of self and adopt a couple-centred approach.