“We are daughters, we are not lovable slaves”: challenges experienced by adult daughters caring for a parent with dementia – a qualitative study

Objectives Experiences of daughter caregivers are underrepresented in the broader caregiving literature, with studies commonly focusing on spousal caregivers. We aimed to explore challenges experienced by daughter caregivers, reporting varying severity of depressive symptoms, of a parent with dementia in Sweden. This study is situated within a wider research program to inform the development of psychological support for this underserved caregiver group.Method Following a semi-structured topic guide, we interviewed 23 daughter caregivers. We used reflexive thematic analysis to analyze the interviews. We did not compare and contrast challenges expressed by daughter caregivers experiencing different levels of depression severity; however, symptom severity is reported to contextualize findings.Results We generated one overarching theme, Changing Roles and Expectations Over Time, and four themes: Caregiver Role – Expectations; Puzzle of Life – Balancing Roles; Relationship with the Parent – Reciprocity, and Anticipating the Inevitable – Loss and Grief. Daughter caregivers reported challenges balancing multiple roles, difficulties prioritizing their own well-being, relationship difficulties with their parent, and anticipatory grief, with challenges changing over the dementia trajectory.Conclusion Future research should explore support needs across specific phases of the dementia trajectory to inform the development of tailored psychological support.