Dementia is arguably one of the biggest challenges facing society today, impacting millions of people worldwide. Nonetheless, there is only a relatively small body of research exploring what it is like to live with dementia from the perspectives of people who have this condition. This is partly because of the (implicit or explicit) belief that people with dementia lack insight into their condition and cannot talk about their experiences clearly. In this article, I argue that such beliefs are typically both erroneous and unhelpful, and that there is great value in seeking to illuminate the lived experiences of people with dementia. I present an interpretative phenomenological analysis of data from semi-structured interviews with six participants who had moderate dementia. I elicit five themes from this analytic process, and discuss the three most prominent here: awareness and understanding of dementia, clarity and confusion, and social support and relationships. I mobilise these themes to narrate the lived experiences of people with dementia, demonstrating their awareness both of the difficulties presented by dementia and of the negative perceptions of others.


Dementia, Interpretative Phenomenological Analysis (IPA), Lived Experience, Personhood, Stigma

Author Bio(s)

Helen Johnson (nee Gregory) is a social scientist, psychology lecturer and performance poet. She is interested in the study of arts and creativity, and in performative social science (or arts-based research). She has studied spoken word and poetry slam communities, educational applications of youth poetry slam, and arts-interventions in dementia care. In recent years, she has begun to combine her research with poetry and visual arts, using art as a means of data collection, analysis and dissemination. She also runs poetry events, and programs the poetry stages for Glastonbury and Larmer Tree Festivals. Helen is a Senior Psychology Lecturer at the University of Brighton. Correspondence regarding this article can be addressed directly to: h.f.johnson@brighton.ac.uk.


I would like to thank the participants and their families, without whom this research would not have been possible.

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