Living on Two Fronts: Spouse Carers' Experiences of Caring for a Partner with Dementia during COVID-19 in Sweden

Background The spouse carers of persons with dementia (PWD) are particularly vulnerable to emotional strain, loneliness, and health deterioration. The COVID-19 pandemic disrupted support services globally, intensifying caregiving burdens. Sweden’s voluntary, mitigation-based approach to the pandemic presents a unique context for exploring caregiving experiences outside strict lockdown conditions. This study aimed to explore the experiences of spouse carers providing care to partners with dementia during the COVID-19 pandemic in Sweden. Methods A qualitative design was employed, using individual semi-structured interviews with 24 spouse carers. Interviews were conducted by telephone, audio-recorded, and transcribed verbatim. Reflexive thematic analysis was performed following Braun and Clarke’s approach, identifying patterns of meaning across semantic and latent levels. Results Five interconnected themes were generated: Contrasting experiences of health ; Consequences of insufficient support ; Healthcare as a vector of infection ; Existential distress of caregiving burden ; and Balancing loneliness with COVID-19 safe socialisation . Despite Sweden’s less restrictive public health measures, spouse carers reported significant emotional exhaustion, isolation, and lack of adequate support. The spouses also noted benefits from changes in health and social care during the pandemic, such as more consistent home care staff and improved patient transport, which reduced stress for PWD and positively affected daily life. The spouses described creative coping strategies and resilience, yet the absence of formal services and fear of infection exacerbated their caregiving challenges. Conclusion The findings highlight that voluntary public health measures may be insufficient to protect caregiver well-being during crises. Culturally sensitive, adaptable support systems are essential to ensure continuity of care and emotional support for informal carers, both during emergencies and in everyday conditions.