Spontaneous conversations as data in young-onset dementia research: a qualitative study

Background Young-onset dementia (YOD), defined by symptom onset before the age of 65, profoundly impacts personal identity, work, and family life. Despite growing interest in the psychosocial dimensions of YOD, the direct voices of people living with the condition remain underrepresented. Existing qualitative research has mainly relied on structured interviews, which can constrain spontaneity and the emergence of authentic meanings. This study adopts an innovative approach by analyzing spontaneous conversations as a naturalistic form of data, enabling a more ecological understanding of living experience.Methods An exploratory qualitative study was conducted at an Italian Meeting Center for people with YOD. Eleven participants (aged 55-68) took part in 14 naturally occurring group conversations, recorded between October 2024 and February 2025. Transcripts were analyzed using the General Inductive Approach. Themes were co-developed through iterative coding and later validated in a participatory feedback session involving all participants.Findings Four overarching themes were identified: (1) Living with Alzheimer's: between awareness and "broad shoulders"-redefining identity and meaning in everyday life; (2) Significant relationships: between closeness, misunderstanding, and new balances-navigating relational change and finding belonging in peer groups; (3) The struggle to be believed: between invisible illness and judging gazes-confronting stigma, disbelief, and social invisibility; (4) Support that makes a difference: between resources and ideas for living better-valuing respectful, personalized, and co-designed support. Participants collectively emphasized the need to move from a "for" to a "with" logic in dementia care and research: "It is not enough to do something for us. We need to build it together."Findings Four overarching themes were identified: (1) Living with Alzheimer's: between awareness and "broad shoulders"-redefining identity and meaning in everyday life; (2) Significant relationships: between closeness, misunderstanding, and new balances-navigating relational change and finding belonging in peer groups; (3) The struggle to be believed: between invisible illness and judging gazes-confronting stigma, disbelief, and social invisibility; (4) Support that makes a difference: between resources and ideas for living better-valuing respectful, personalized, and co-designed support. Participants collectively emphasized the need to move from a "for" to a "with" logic in dementia care and research: "It is not enough to do something for us. We need to build it together."Conclusions Spontaneous conversations offer a powerful lens to capture the nuanced, relational, and participatory aspects of living with young-onset dementia. This approach complements traditional qualitative methods by restoring authenticity to the voices of people with dementia, fostering inclusion, and informing the co-construction of more responsive psychosocial and community interventions.