The Influence of Social Location on the Experience of Early Dementia

This thesis investigates the intersections of social class and gender with the early dementia experience. 20 older people with a likely dementia diagnosis were recruited from memory clinic referrals. Unstructured interviews were conducted in the person’s home in the liminal space between referral and formal diagnosis and were analysed using interpretative phenomenological traditions.

Drawing on Bourdieusian concepts of habitus and capital allowed a nuanced and complex understanding of meaning creation to be explored. Understandings and meanings of memory loss and dementia were conceptualised by participants in terms of biographical flow and expectations of ageing. Prior experience of dementia caring roles promoted earlier help seeking behaviour, whilst attitudes towards classifying dementia as a mental or

physical illness, was a powerful instigator of uncertainty in meaning. The desire to reduce stigma prompted avoidance coping mechanisms in terms of physical withdrawal, and social and mental distancing from potentially challenging situations, and reinterpretation of cognitive limitations. These responses were simultaneously shaped and defended by a sense of a life lived and personal biography, whilst the level of challenge to biographical flow was directly related to the meaning attributed to memory loss.

These findings uphold the view that dementia is not universally understood as a wholly devastating illness by those experiencing memory loss, and that services need to take account of personal biography and the level of interruption to biographical flow in assessing the meaning making related to memory loss. ‘One size’ of memory service, does not ‘fit all’.