Dementia stories: Representations of carers

Until recently the 'voices' of people with dementia have not been present in the representations about Alzheimer's Disease available publicly through the media. The story of the person with dementia has frequently been told through the 'voice' of their carer or through the 'voices' of experts such as those representing Alzheimer's Societies. This is changing and more first person accounts are emerging, partly as a result of the activism of the people with dementia movement. But what of the voices of the carers - have they changed? This paper focuses on the 'voices' of carers and explores the ' dominant narrative of sacrifice' that emerges in these stories. However there are other narratives as well and these have important consequences for both people with dementia, those who care for them, and those people who have yet to be touched by the impact of Alzheimer's Disease. Examples from a systematic analysis of New Zealand representations obtained from publicly available sources (print media, Internet, newsletters)  from 2000 to 2011 are used to illustrate these different representations. I also seek to illustrate that these representations are not unique to New Zealand but apply to other similar societies.  I conclude by highlighting the tension that still exists in representing both people with dementia and those who are carers in a way that recognises their rights as individuals and as citizens.