Family caregivers of people with dementia experiences of interaction with the Danish healthcare sector: a qualitative study on changes

Purpose: This research aims to understand how family caregivers interact with the Danish healthcare sector while taking care of a relative with dementia. Design/methodology/approach: Nine individual interviews of family caregivers were conducted in 2022. Data collection used a phenomenological narrative approach, and the analysis was influenced by Klaus Høyer “tin-opener” analytic method. Findings: Family caregivers experienced significant ambivalence surrounding the diagnosis. Many family caregivers felt that professionals failed to adequately prepare them for their new informal caregiver role, resulting in feelings of shame and unpreparedness. The identified themes underscores the significant time commitment and the neglect of self-care associated with the role of informal caregivers. Research limitations/implications: Research should focus on developing supportive interventions for family caregivers to be able to support their needs. Furthermore, research should ensure that family caregivers are prepared for their tasks without being trained and able to carry out health professionals’ tasks. Practical implications: Insight into how the family caregivers experience the interaction with the Danish healthcare sector can help healthcare service providers better support the family caregivers and contribute with more tailored support, which may ensure a higher quality of healthcare delivery. Originality/value: The authors of this study reveal the unseen and quiet work that occurs in everyday life when caring for a person with dementia and being the primary point of contact with the healthcare sector. It is important to consider family caregivers’ experiences with the healthcare sector when developing healthcare interventions to support family caregivers better. This will help tailor the interventions to their needs.