Dementia: What comes to mind? An exploration into how the general public understands and responds to dementia.

Abstract

Abstract

This thesis explores how the general public understands and responds to dementia. In the context of this study the word ‘understanding' is used to convey the complex co-construction of knowledge and establishing of beliefs that constitutes public understandings of dementia. The study also examines the responses of members of the public to dementia, in the context of their understanding.

Data were collected over a 12 month period and included a module in the Northern Ireland Life and Times (NILT) survey, five focus groups and nine interviews with participants from the focus groups. The survey module included thirty measures examining levels of knowledge and attitudes towards dementia. 1200 participants were targeted and the survey was administered by the Northern Ireland Research & Statistics Agency with a response rate of 58%. The focus groups and interviews provided the mechanism to gather a more nuanced picture, exploring the beliefs behind the attitudes and the self-reported responses of participants to people with dementia.

Findings indicate that the general public has a reasonable knowledge of the symptoms and pathway of dementia in line with a bio medical model. However the findings also indicate that the general public holds a mix of theoretical and empirical knowledge and that this is often contradictory. A complex mix of scientific or medical information, experience, anecdote and assumptions contribute to the discourse. This information is stored and conveyed in the form of stories and a consequence of this interplay is that individual experiences told in the form of stories are generalised to become building blocks in the construction of what the general public understands dementia to be.

The current construction of dementia among the general public is found to be both nihilistic and ageist with clear evidence that dementia is stigmatised. I will argue that that the relationship between dementia and ageing in the minds of the general public is a symbiotic one. Dementia has become a cultural metaphor for unsuccessful ageing marking entry to the fourth age.

The stigmatising response of the general public is the result of a complex interplay of multiple factors. I have expanded on previous ideas of multiple jeopardy and intersectionality, suggesting that the stigma associated with dementia is unique and driven as much by emotional responses as by the social location of the person with dementia. I have borrowed Brooker’s (2003) term “Dementia-ism’ to describe this stigma.

This thesis argues for a more complex and sophisticated approach to changing public attitudes and reducing stigma. Dementia-ism must be addressed with the same strength of purpose currently applied to sexism, racism and ageism.