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

Area of Science:

• Gerontology
• Psychosocial Research
• Qualitative Research Methods

Background:

• Young-onset dementia (YOD) significantly impacts identity, work, and family life, with limited representation of direct patient voices.
• Traditional qualitative research often uses structured interviews, potentially limiting authentic self-expression.
• This study utilizes spontaneous conversations for a more ecologically valid understanding of the lived experience of YOD.

Purpose of the Study:

• To explore the psychosocial experiences of individuals living with young-onset dementia (YOD).
• To analyze spontaneous conversations to capture authentic, nuanced perspectives.
• To inform the development of more responsive psychosocial and community interventions for YOD.

Main Methods:

• An exploratory qualitative study involving 11 participants with YOD at an Italian Meeting Center.
• Analysis of 14 naturally occurring group conversations recorded between October 2024 and February 2025.
• Application of the General Inductive Approach for theme development, with participatory validation.

Main Results:

• Four key themes emerged: redefining identity, navigating relationships, confronting stigma, and valuing personalized support.
• Participants highlighted the importance of moving from a 'for us' to a 'with us' approach in dementia care and research.
• Emphasis on co-design and collaborative efforts in supporting individuals with YOD.

Conclusions:

• Spontaneous conversations provide a rich, authentic lens into the lived experience of YOD.
• This naturalistic data collection method enhances the inclusion and authenticity of voices of people with dementia.
• Findings support the co-construction of more effective psychosocial and community-based interventions for YOD.