‘You’re just a bit doolally’: Tackling the stigma of dementia

Stigma is an issue that continues to blight progress in dementia research and support for people with dementia and their carers. It is mainly exhibited through fear and people who have the condition being discredited or ostracised. It often stems from wider ageism – the idea that older people are ‘doddery but dear’ – dementia is often simply viewed as an extension of this facet. Although this might be thought of as reasonably benign, the implications are negative. At best it underestimates the capability of people and at worst it leads to negative treatment decisions because people are essentially seen as ‘past it’.

A barrier to research

Stigma often stems from wider ageism – the idea that older people are ‘doddery but dear’.

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.

A growing issue

In the UK we are likely to 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 causes behavioural changes by families and the general public and can deprive patients of a timely diagnosis and further support as people fear finding out. While work to date 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 the condition rises.

Further understanding required

Although recognised as a significant issue, stigma around dementia has never been explored from a multidisciplinary perspective before. With this in mind Alzheimer’s Research UK, Alzheimer’s Society and the International Longevity Centre-UK organised a dinner and discussion in the House of Lords on 3 February 2014, hosted by Baroness Greengross, Chair of the All Party Parliamentary Group on dementia.

The aim of discussion was to provide new insights and perspectives on the subject, bringing together the collective expertise of a range of contributors to discuss the real causes of stigma and to expand on the factors that may give rise to it.

The science of stigma

Neuroscientists argue that we need to draw together research exploring the biological foundations of stigma and that an understanding of the biological process that are triggered when someone exhibits stigma will help us to develop ways to challenge and modify our reactions so that individuals no longer stigmatise.

Whether this understanding is required to eliminate stigma is open to debate – and was certainly a lively part of the discussion at the dinner. It is no doubt one element that we need to explore further, alongside understanding the social and cultural reasons for stigma – for example better understanding and addressing some of the factors within families of South Asian and Eastern European origin, where stigma may be related to religion and a sense of keeping things private within families.

What next?

We will be producing a compendium of short essays that will capture some of the contributions of speakers and guests at the dinner. It will be informative, thought provoking, and challenging and will aim to offer solutions and recommendations to tackle the stigma of dementia.

We will only defeat dementia through high quality research and translation into treatments, but it is important that we also work to defeat issues around dementia that blight people’s lives.

This is a cross Blog post with the International Longevity Centre-UK

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About the author

Dr Matthew Norton

Dr Matthew Norton joined Alzheimer's Research UK as Head of Policy and Public Affairs in 2013 and lead on policy development and stakeholder engagement up to 2018. He has a PhD in Social Policy and experience of supporting the design and running of bio-medical and clinical research for the National Institute for Health Research (NIHR). Matthew has also worked as a Senior Policy Advisor at the Prime Minister’s Strategy Unit and prior to joining Alzheimer’s Research UK worked in policy and research for Age UK.