Julian Fellowes helps launch dementia-friendly media, arts and drama guide

Posted On: 
14th September 2018

Over half (55%) of 180 people affected by dementia said they felt the media didn’t represent them and over a third (34%) described dementia portrayal as negative

Yesterday evening, professionals from across the media and arts industries came together with Oscar-winning screenwriter, author, actor and director Lord Fellowes of West Stafford, for the launch of Alzheimer’s Society’s new dementia-friendly media, arts and drama guide, hosted by Channel 4.   

Joined by fellow actors such as Hugh Bonneville and Hugh Dennis, professionals from across media, arts and drama, and people affected by dementia, Alzheimer’s Society Ambassador Lord Fellowes presided over the launch including a panel discussion exploring how dementia is portrayed in the industry and the impact that has.

For the 850,000 people currently living with dementia in the UK and their families, how dementia is depicted in the media and arts has a huge impact on how they feel about their condition and how others view them. It informs people’s attitudes, beliefs and assumptions, shaping public opinion.  Sensationalist accounts have, over the years, used language that depicts dementia negatively, portraying it as a frightening and mysterious disease (Hyman, 2008; Cahill, 2018). Too often people affected by dementia tell us that the portrayal of the condition in newspapers, TV dramas, radio and comedy shows is repeatedly misinformed and negative, leaving them feeling angry, excluded and ashamed. People with dementia have the right to be treated with respect and not stigmatised because of their diagnosis.

In a new Alzheimer’s Society survey of 180 people affected by dementia, over half (55%) said they felt the media didn’t represent people with dementia and over a third (34%) described the portrayal of dementia in the media, arts and drama as negative. Interestingly though, the power of representation is clear with nearly three-tenths of respondents (28%) saying a portrayal of dementia in the media or arts prompted them to start a conversation about the condition with friends, family or colleagues and a further 62% saying a dementia storyline in a drama or soap would encourage them to seek help from a medical professional if they were worried about their own risk or that of a loved one.1

Julian Fellowes said: “I have seen the devastating impact of dementia at close range. I know a mother of young children who has younger onset dementia in her forties; I have witnessed older family members living with the condition.

“Dementia is going to be in all our lives. The point of most stories is that you don’t know what is going to happen - but the moments in the story need to be recognisable and identifiable. The more that we are unafraid of dramatising people with dementia at the heart as opposed to putting them in the backdrop of the story, the more meaningful it will be to our audience.

“I know that the stereotypes, misconceptions and inaccuracies portrayed about dementia in popular culture are neither true nor reflective of this complex condition. I also know that the language usually associated with the portrayal of dementia in drama heightens people’s fear of it, which stops people getting a diagnosis and reinforces stigma.

“The media, from news to dramas and documentaries, arts and popular culture have a critical role in driving a cultural shift.”

‘Dementia-friendly media and broadcast guide: a guide to representing dementia in the arts, culture and popular discourse’ is a groundbreaking new resource available to individuals and organisations from across the industry. It includes information about dementia, on the impact portrayal of dementia has on society, practical advice on how to improve practices, such as how to best portray people and/or characters with dementia, what language to use and avoid, and tips on how to interview someone living with the condition.

This new guide has been developed following thorough consultation with people with dementia as well as representatives across the media, arts and culture sectors, to ensure it includes the most helpful information to help address the portrayal of dementia across the industry, challenges faced and how we can help ensure better practice.

Bonnie Estridge, national freelance journalist, was diagnosed with Alzheimer’s disease herself aged 65. Bonnie joined Lord Fellowes taking part in the panel discussion around the topic with fellow industry professionals.

She said “The portrayal of dementia in the media can give out the signal that a person with the condition is not quite normal and may not be able to lead anything remotely approaching a normal life. Yet this is a complete and utter red herring.

“I’m lucky enough to be a journalist with a great editor who has pushed me to write a monthly column for a national newspaper, in which I am trying to show it is possible to lead a life interestingly different. This has been really well received.

“People have to know what dementia is and what it is like to have it. I would encourage anyone working in the media to get out there and make sure they are placing stories about dementia in different areas of the media and make use of this most important guide.”

Alzheimer’s Society is now encouraging people from across the industry, from producers to presenters and scriptwriters to actors to download the guide and embed its practices in their work.

Jeremy Hughes, Chief Executive Officer at Alzheimer’s Society, said:

“Dementia affects people from all parts of society, and will impact all of us. The way we talk about dementia has a direct effect on how people feel and a profound effect on society.  After all, words affect the way we think, in turn affecting how we behave – portrayal across this industry therefore influences the lives of millions of people around the country.

“The power of the media to bring about change has been demonstrated through mental health and disability rights campaigns. By addressing enduring issues in dementia representation in the media, arts and popular culture, we can tackle stigma, improving the lives and experiences of people affected by dementia. Something as simple as not branding people as ‘dementia sufferers’ can make a world of difference to them.

“We are beginning to see some good examples of a changed approach, like our recent partnership with ITV and Channel 4 for our United Against Dementia campaign last year, and while there are good examples of best practice across the industry, we urgently need to do more.

“We hope that this guide will become an essential resource helping create the much-needed step change.”

To find out more about the guide and how to get involved, please visit: alzheimers.org.uk/mediaguide