Evidence on post-diagnostic support for people with young onset dementia is scarce. Previous studies have employed a problem-focused approach; however, evidence on ‘what works’ in real-life practice is essential to develop recommendations for service design and delivery. This study aimed to provide insight into ‘what works’ from the perspectives of people with young onset dementia and their supporters. We gathered free-text responses on positive service experiences via a UK cross-sectional survey. Inductive thematic analysis was used to identify the objectives of positive services and the needs these met. Follow-up interviews enabled in-depth insights from people with diverse diagnoses, ages and social situations. These were analysed using a template drawn from the survey. The 233 survey respondents gave 856 examples of positive support. Analysis of 24 follow-up interviews led to 16 themes clustered under three superordinate themes: ‘maintaining autonomy’, ‘being myself’ and ‘togetherness’. We found that positive services address the disruptions to sense of agency, selfhood and meaningful relationships that are experienced by those with young onset dementia. The study provides an in-depth understanding of the needs met by positive services for younger people with dementia. Our nuanced findings on good practice can inform age-specific guidelines for young onset dementia and indicate how personalisation can work in practice to help people with young onset dementia to maintain identity, autonomy and connections.

This paper aims to contribute to the knowledge about open, co-produced meeting centres for people with dementia, from their own perspective. Services that support people who are newly diagnosed with dementia are often insufficient. Co-produced services have the potential to address the need of people with dementia to be useful and productive, while reducing the stigma. In this study, we applied a qualitative design. Data were collected at a meeting centre for people with newly diagnosed dementia, and consisted of fieldwork (13 days for about two hours at a time), written materials, and semi-structured interviews (mean length 30 minutes) with five attendees with dementia and two staff persons. The analysis was inspired by situational analysis. The findings showed that the meeting centre provided a place for human encounters, a break from everyday life, and a place to share knowledge and develop new skills. Further, challenges were described. Co-production consisted of the attendees being encouraged to take part in the planning of activities, learning from each other and providing mutual support. The study adds to previous knowledge about co-produced services for people with dementia. Future studies can clarify how co-production can be developed in services for people with newly diagnosed dementia in countries and regions where there is a dearth of this kind of support.