Abstract Dementia healthcare systems must transform to meet contemporary demands. Communicating lived experience of people with dementia and carers at scale is essential to driving this. Using over one million anonymised posts from the online UK Alzheimer’s Society Dementia Support Forum, we identified key experience clusters via topic modelling, large language models and content analysis. Resulting topics were corroborated and mapped onto personal timelines by people with lived experience during co-creation workshops. Through participatory synthesis we identified eleven key stages and associated challenges from symptom onset to professional care, which we visualised into a journey map. This communicates dementia as a social and systemic challenge beyond a medical condition. It also provides participant-identified opportunities for change, including diagnostic equity, carer recognition, and localised support. Our hybrid method offers an approach to engaging healthcare lived experience at scale, while the map provides an accessible communication tool to inform UK dementia policy and service design.
Newton et al. (Mon,) studied this question.