“Why No One Worries About Us?” Perspectives from Carers of People Living with Dementia in the Republic of Serbia

Abstract

Background/Objectives: Dementia care in the Republic of Serbia remains largely undocumented in the scientific literature, and support for family carers is almost entirely absent from national health and social care policy. This study aims to understand the experiences of carers providing care for people living with dementia in Serbia, with a focus on barriers encountered during diagnosis and post-diagnostic care, and on the support they most urgently need. Methods: A mixed-methods sequential explanatory design was employed, combining a self-completed questionnaire (n = 37) with in-depth interviews (n = 20). Participants were recruited through the Serbian Association for Alzheimer’s Disease. Quantitative data were analyzed using descriptive statistics and Fisher’s exact test; qualitative data were analyzed using reflexive thematic analysis. Results: Most carers were women (86%), with a median age of 52 years and a median caregiving duration of four years. Diagnosis was typically made at a moderate to severe stage by a neurologist or neuropsychiatrist, frequently in the private sector. Post-diagnostic support was almost exclusively provided by family (68.8%) and the Serbian Alzheimer’s Association (46.9%), with social care services practically absent. Nearly 40% of carers spent 90–100% of their daily time on caregiving. Thematic analysis identified four main themes: late but procedurally adequate diagnosis; extensive unmet needs alongside minimal formal support; systemic failures in both health and social care; and the central yet insufficient role of family. Carers reported profound feelings of abandonment, burnout, and social invisibility. Conclusions: Carers of people with dementia in Serbia face severe and largely unaddressed burdens, with the health and social care systems providing negligible structured support. Carers consistently identified the development of day center services as their single most urgent need. This finding calls for immediate and dedicated government investment in dementia care as an essential first step toward recognizing and addressing the needs of this invisible population.