This condition impacts every aspect of my life: A survey to understand the experience of living with developmental prosopagnosia

Abstract

This mixed methods study examined the real-world experiences of living with developmental prosopagnosia (face blindness), a lifelong neurodevelopmental condition that severely affects the ability to recognise faces despite otherwise normal vision, IQ and memory. Twenty-nine UK based adults with confirmed face recognition difficulties completed an online survey describing and quantifying their experiences of living with poor face recognition. Although the majority (62%) of participants reported being able to recognise their immediate family, e.g., parent, partner, or child, strikingly 35% reported being unable to reliably recognise their immediate family members out of context. Even fewer (45%), reported always being able to recognise their three closest friends when encountering them unexpectedly, highlighting that DP commonly affects the recognition of highly familiar faces with whom individuals have close emotional relationships. Furthermore, participants who reported being able or unable to recognise their immediate family showed no significant difference in objective face memory ability. More than two thirds of participants (65.5%) reported being able to recognise fewer than 10 familiar faces (with the most common response being none), far below typical abilities. Thematic framework analysis highlighted how low public, professional, and employer awareness of developmental prosopagnosia presented challenges across multiple domains including seeking diagnosis, social and family relationships and workplaces. Driven largely by concerns about negative evaluation by others, most participants employed a range of highly effortful, though error prone, strategies to disguise and compensate for their face recognition difficulties. Some of the strategies described may help explain why many individuals can perform within typical norms on laboratory face processing tests despite their clear difficulties in everyday life and highlight the need for ecologically valid tests. Participants’ highest priorities for future research were improved awareness of developmental prosopagnosia and interventions to improve their face recognition ability.