Abstract / Summary
Abstract Background Young-onset dementia (YOD) presents with distinct challenges due to its occurrence in an earlier stage of life, heterogeneous diagnostic pathways, and unequal access to age-appropriate services. Despite strong policy emphasis on person-centred care (PCC), little is known about how PCC is experienced and enacted during the first year after diagnosis. This study aimed to collaboratively examine how individuals with YOD, their carers, and professionals experience PCC during the first post-diagnostic year, and to identify the conditions required for its realisation. Methods This study was embedded within Participatory Action Research (PAR) and combined a survey with focus groups. In line with PAR principles, individuals with YOD, carers and professionals in the Netherlands collaboratively designed, conducted, and analysed data. Data were collected on experiences with PCC and the conditions required for its realisation. Results Both groups identified similar conditions for PCC, including attention to individual and carer needs, YOD-specific knowledge, flexibility, and collaboration. However, these conditions were not consistently enacted. Bringing perspectives together showed that differences concerned less what PCC requires than when, by whom, and how care and support should be provided. This highlighted the importance of ongoing alignment of needs, expectations, timing, and responsibilities across the care trajectory. In the Dutch care context, the case manager may be well positioned to facilitate this alignment. Conclusions Realising PCC in YOD requires not only identifying individual needs and appropriate care components, but also ongoing alignment of changing needs, expectations, timing, and responsibilities across the care trajectory. These insights may provide practical guidance for strengthening PCC delivery in YOD and may also inform service development for other rare and complex conditions.