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Paper short abstract

Informal dementia carers in Hungary may experience care poverty. This paper explores how carers developed the knowledge and skills to meet the ever-emerging challenges they faced, through various sources, trial and error, and peer support, when the formal health and social care systems failed them.

Paper long abstract

This paper examines how informal family caregivers of people living with dementia adapt to the challenges they face, particularly in acquiring the knowledge and skills needed throughout their caregiving journey. It reconstructs how carers develop practical and valid expertise despite beginning with very limited understanding, and interprets these processes in the context of unmet needs stemming from inadequate or inaccessible formal health and social care in Hungary.

The analysis draws on data collected between 2019 and 2022, including in‑depth semi‑structured interviews with 22 informal caregivers. Participant observation at Alzheimer Café events – typically organised by social services to support those affected by dementia – provided further insight into the adequacy of available support. Additionally, online communication and content from Alzheimer Cafés on Facebook were examined, with particular attention to the period when in‑person events were suspended during the pandemic.

Findings reveal a substantial and policy‑relevant presence of ‘care poverty’ in Hungary. Caregivers frequently described negligent formal care, limited knowledge sharing, and a lack of recognition as partners in consultations. Observational and content‑analysis data echoed these concerns, showing that Alzheimer Café support was inconsistent.

Caregivers emphasised that meaningful assessment and information from the point of diagnosis would have been crucial, yet formal support repeatedly failed to meet their evolving needs. As a result, carers developed their own expertise through experience, trial and error, and alternative information sources. They also reflected on what constitutes ‘valid knowledge’, discussing expertise, expert identity, and the value of peer support grounded in shared experiential understanding.