Public Discourses of Dementia: Challenging stigma and promoting personhood

The word dementia refers to groups of disease processes that involve a range of cognitive impairment symptoms, including memory loss and problems with reasoning, perception and communication skills. There are around 50 million people living with dementia in the world today and this is expected to triple by 2050. The most common type of dementia is Alzheimer's Disease. Because there is presently no cure for it, dementia is a chronic condition - people who are diagnosed with dementia live with it for the rest of their lives. In the UK alone there are currently estimated to be around 850,000 people living with dementia, a figure that is anticipated to increase in the future due to the country's ageing population. Dementia is major public health challenge in the UK, where the costs of care are estimated to be around £13.5 billion, with the costs of 'unpaid' care in the country understood to be even higher. As the incidence of dementia increases in the UK, it is anticipated that these costs will increase too.

People receiving a dementia diagnosis not only live with dementia, but many must also live with the stigma that surrounds it. Dementia stigma can negatively impact the lives of people living with dementia and their families in a wide range of ways, such as creating feelings of shame and making them less likely to seek medical support and take part in research. In the UK, dementia stigma has also been found to distort service standards at all levels of healthcare, from funding decisions to service commissioning and frontline care. In other words, dementia stigma is harmful not only for the quality of life of people with dementia but also, potentially, for their life chances too. Dementia stigma is also likely to have implications for the British public more generally, as it has been found to create fear and misunderstanding of the syndrome, as well as negative attitudes towards people living with it. The harm done by dementia stigma is thus widespread and deep, having implications not only for the health and quality of life of those most affected by the syndrome, but for society as a whole.

The way we talk and communicate about dementia, including our use of language and imagery, has the power to shape our attitudes towards it and, for people diagnosed with dementia, how it is experienced. Unfortunately, much communication about dementia in the public domain, such as in the media, is negative and sensationalistic, foregrounding its threat and presenting dementia diagnosis as an effective death sentence. People living with dementia, meanwhile, are presented as hazardous and lesser versions of their past selves. Such portrayals have been found to have harmful effects on people living with dementia and their families, to create fear and misunderstanding in the public, and are more likely to add to dementia stigma than to challenge it.

This research will thus challenge dementia stigma by changing the ways in which dementia is discussed in the public domain in the UK, focusing in particular on the mainstream media, public health bodies, charities, social media and online dementia support groups. Understanding how the language and imagery associated with communication about dementia in these contexts relate to, but also vary between, one another can help us to assess the potential effects of dementia representation in one situation on another. In light of its findings, the researchers on this project will work closely with people with dementia, charities, advocacy groups and the mainstream media to implement changes to communicative practices around dementia in ways that challenge stigma and promote personhood, through the development of communication guidelines and the delivery of training to these stakeholders. Crucially, the research team is collaborating closely with people with dementia to ensure that their voices are heard and valued not only in future public discourse but also in the research process itself.