Mental health - The war against dementia

Concerted lobbying and some eloquent celebrity spokespeople have elevated public awareness of the issues surrounding dementia. Gemma O'Reilly reports on the battle for funding.

As interviews go, it was gripping stuff. Novelist Sir Terry Pratchett, who has early-onset Alzheimer's disease, told listeners of BBC Radio 4's Today programme in February of his plans to be a test case for assisted suicide tribunals.

'There are plenty of people like me who would like to die when the time comes rather than end up in a waiting room for God,' said the 60-year-old.

Alzheimer's Research Trust press and public affairs officer Andrew Scheuber says Pratchett's involvement is pivotal in increasing the amount of media coverage of the disease: 'Sir Terry's public pronouncements have shaken perceptions of dementia and generated momentum as more people become aware of the condition and the need to support research into new treatments, preventions and cures.'

The population is ageing and more than 820,000 people in the UK are affected by dementia, but the condition has always been something of a taboo subject.

Not only is public awareness of dementia low, there is a significant lack of funds to inform people about the condition.

Cost to the economy

Dementia costs the UK economy £23bn a year, twice the cost of cancer. Yet combined government and charitable investment in dementia research is 12 times lower than spending on cancer research, according to the Alzheimer's Research Trust.

The combination of these factors has left mental health charities with an immense challenge to change public perception and increase research funding.

'For a long time, dementia was a subject that many avoided talking about,' says Age UK charity director Michelle Mitchell. 'Whether this was due to a fear of the devastating disease or a lack of understanding is not clear. Although there has been an increase in interest in dementia, there are still misconceptions about the disease that need addressing.'

Alzheimer's Society head of communications Gayle Willis adds: 'Age is one of the factors that has stopped the media covering the condition. The media were looking for stories about triumph over adversity, but you couldn't do that with dementia.'

But over the past few years the condition has been creeping up government and media agendas after increased lobbying by key dementia charities, aiming to position the disease as a serious mental health issue that needs more attention and better funding.

Pratchett's contribution marked a watershed in the profile of the condition, and those responsible for bolstering publicity for other health issues are looking at what they can learn from the dementia lobby.

Last year, a coalition was formed between the main Alzheimer's charities, including the Alzheimer's Research Trust, the Alzheimer's Society and Age UK. The three patient groups came together during the 2009 autumn party conference season, running fringe events at the Labour, Conservative and Liberal Democrat conferences.

'The aim of the events was to engage directly with the parties about dementia and call for greater funding for dementia research,' says Mitchell.

The charities' appearance at the Liberal Democrat conference garnered the most media coverage because Pratchett was present.

Pratchett revealed he was suffering from dementia in 2007. He is now a patron of the Alzheimer's Research Trust and has been involved in campaigning for the disease since his diagnosis. He met Liberal Democrat leader Nick Clegg to discuss why the party should commit itself to setting a higher priority for dementia research.

Although the charities received the most media coverage at the Lib Dem conference, Willis stresses that the patient group has developed good relationships with all three political parties, particularly in the run-up to the general election.

Scheuber adds that the Alzheimer's Research Trust has been holding regular meetings with MPs and peers, briefing them and encouraging them to give dementia research a higher priority.

Commitments from politicians

The charities' hard work can be seen in the commitments made in all three major parties' election manifestos. Both the Lib Dems and Conservatives made commitments to prioritise dementia research. Labour, with the help of the Alzheimer's Society, formed the All-Party Parliamentary Group on Dementia, involving charities and the Department of Health to increase the quality and quantity of dementia research in the UK.

The group has so far produced widely-covered reports on anti-psychotic drug treatment and the state of dementia care in the home, exposing the state of Alzheimer's care in the UK.

Both the Alzheimer's Research Trust and the Alzheimer's Society have been able to mount public information campaigns with funding from pharma companies that produce dementia drugs. The Alzheimer's Society's 'Worried about your memory?' public information campaign highlights the importance of early diagnosis, encouraging people to go into GP surgeries to get any symptoms checked out. It was funded by money from Pfizer, Eisai and Shine, all of which produce dementia drugs.

Both charities stress, however, that funding from pharmaceutical companies is not used for lobbying and does not influence their decision to urge the Government to invest more in dementia funding.

Getting celebrities to talk about their experiences of the disease, or that of family members, acts to support the more advice-laden information campaigns. Alongside Pratchett, former GMTV presenter Fiona Phillips has helped to raise the profile of dementia after revealing that both of her parents suffered from the disease. She took part in a Channel 4 Dispatches documentary, which Willis believes helped dementia come out of the shadows and had a major impact on media coverage: 'Dementia has definitely moved up the news agenda. We are contacted by media outlets that wouldn't have covered the issues five years ago. High profile people are speaking out and it's now considered a big news item.'

Emulating success

The dementia groups' success in escalating media coverage has in turn put pressure on Parliament to address funding issues, and is seen as a good template for other patient groups trying to increase media attention and research funding.

British Lung Foundation chief executive Dame Helena Shovelton says: 'Alzheimer's charities have been extremely successful in spreading their key messages far and wide and we hope for that same outcome around lung disease.

'It's no secret that dementia and chronic obstructive pulmonary disease are subjects that people just don't want to talk about, but these recent campaigns have broken down the barriers. We have plans to make the same progress and put lung disease at the forefront of the health agenda during 2010/11.'

And while others may see the progress made by Alzheimer's charities as a success story, it is clear they know the battle against dementia is far from won.

SPEAKING OUT - PRATCHETT ON ALZHEIMER'S

'It's actually quite hard to tell whether I have dementia or not - except for the fact that I've been shown a nasty bit at the back of my brain.' - The Guardian, 18 March 2008

'What are we? We are our memories. Yet this takes away our memories.' - Living with Alzheimer's, BBC2

'I have had Alzheimer's now for the past two years plus. It's a nasty disease, surrounded by shadows and small, largely unseen tragedies. People don't know what to say, unless they have had it in the family.' - Speech at Alzheimer's Research Trust Network conference

'I don't particularly want to be "Terry Pratchett, the famous Alzheimer's sufferer". Everywhere I go, people expect me to be some kind of a wreck and it's beginning to get on my nerves.' - Living with Alzheimer's, BBC2.

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