Monday 3rd February 2014; 19:00 (for 19:20) – 22:30; Cholmondeley Room, House of Lords, Westminster, London

ILC-UK held a dinner discussion, hosting by Baroness Sally Greengross 9ILC-UK Chief Executive) in the House of Lords on the topic of dementia and stigma. This dinner was kindly supported by Alzheimer’s Research UK, Alzheimer’s Society, Medical Research Council and Pfizer, and ILC-UK are very pleased to be collaborating and working with these organisations. Baroness Greengross co-chaired the event with Professor V Hugh Perry, Chair of the Neuroscience and Mental Health Board at the Medical Research Council and Professor of Experimental Neuropathology at the University of Southampton.

Stigma is a huge barrier to diagnosis, treatment and quality of care for dementia, affecting individuals and their families. The World Alzheimer’s Report from 2012 highlights the issue through a global lens, with 75% of people with dementia and 64% of carers surveyed responding that there are negative associations with having dementia in their countries. In the UK we will see numbers of people with dementia rising to 1 million by 2021. These high numbers mean that unless we take action, large numbers of these people will continue to face stigma. Work by the Nuffield Council of Bioethics from 2009 found that a low understanding of dementia-caused behavioural changes by families and the general public can deprive patients of an early diagnosis and further support. While this existing work has drawn attention to the existence of the issue there is still much to understand about why dementia remains outside the realm of acceptable everyday conversation even as the profile of dementia rises. We need to draw together where research is exploring the real causes of this stigma.

The central focus of this dinner discussion was not to revisit the statistics on this stigmatisation, but to try to understand the factors that give rise to stigma of this vulnerable group of individuals. During the evening we heard from speakers from different fields including Peter Piot (London School of Hygiene and Tropical Medicine), Julian Hughes (Newcastle University) and Neil Harrison (Brighton and Sussex Medical School). These speakers framed the neuroscience, evolutionary biology, ethical and other issues that lie behind the negative stereotyped responses. This was followed by an opportunity for guests to discuss the issues raised and contribute to the debate where we focused on how we can seek to tackle stigma in light of knowledge and expertise on its origins.

The results of this debate will be written up as a comprehensive summary report by the ILC-UK. This synthesis will aim to shed further light on the reasons why dementia continues to carry the weight of this stigma, and how this situation might be ameliorated. By addressing the basis of stigma, we hope that education and information can become more effective in targeting the causes of negative reactions to dementia and people with dementia and ultimately removing this stigma and discrimination.