Thursday, 26 June 2014

Government research into Dementia

Prime Minister David Cameron yesterday called for the UK to be more “dementia-friendly” to help sufferers and urged an increase in international funding for research to find a cure.
He announced that the Government is doubling funding for dementia research to £66m, but insisted that other countries needed to step up their efforts to deal with the rising numbers living with the condition.
Yet leading dementia experts in the North East say it is essential that more is done to help highlight the social impact of the condition.
Dr Lynne Corner, a social gerontologist specialising in dementia research, and Director of Engagement at Newcastle University Institute for Ageing, was at the summit where Mr Cameron made his speech.
She said: “It is of course good news that David Cameron has announced such an enormous boost to dementia research funding. Yesterday’s summit would also have been the perfect opportunity to highlight the social impact of dementia as well as the health aspects.
“Dementia is not only a health issue, which is how it is often treated, it’s also a social and societal challenge. One in three people over 65 will die with dementia, and many more will know someone with dementia, whether a loved one, neighbour or co-worker. It impacts many peoples lives in many different ways.
“As well as funding research to understand the causes of dementia and treat dementia, we need more funding for services that help people living with dementia, especially carers. We need to fund projects that help us understand how people with dementia can live happier, more connected lives and how carers can be helped and supported.
“There is already some great work out there, for instance projects using digital technology to help those suffering with dementia increase their engagement in society, which need public recognition, support and funding if we are going to meet this challenge.”
More than 300 health and finance experts listened to the Prime Minister at a summit in London to discuss the important issue, where he warned of a “market failure” on dementia drug research and development.
Last year, the UK used its presidency of the G8 to host an international summit on dementia, which ended with experts setting a global ambition to find a cure by 2025.
Yesterday, delegates came together again for the first in a series of legacy events following the summit and were told by Health Secretary Jeremy Hunt that there is a “desperate need” for more investment in research. The economic and social reasons to find a cure, or disease-modifying therapy, cannot be ignored, Mr Hunt said.
Rob Stewart, North East communications and media officer for the Alzheimer’s Society branch in Newcastle acknowledged that improvements for dementia patients had been made in recent years but more still needed to be done.
He said: “We have seen the huge progress that has been delivered for cancer research because of a sustained boost in funding and now need the same for people with dementia. David Cameron’s announcements mean the UK is leading the fight in dementia research but our global partners will be crucial to fulfilling the promise of the G8.
“Since the Prime Minister launched his dementia challenge in 2012, research funding has been increased and there’s been a huge amount of activity to tackle dementia, leading to the first ever G8 summit dedicated to a condition and a landmark pledge to find a cure or treatment by 2025.
“This has put dementia on the agenda so the condition is beginning to get the attention it deserves alongside other diseases, however there is still a long way to go.”
It is estimated that by 2021 there will be as many as a million people with dementia and costs are set to rocket from the £23bn per year that dementia already costs the economy.
There is no cure for the condition and there have been no new treatments for dementia since 2003 - those available do little to slow the progression of the disease.
Earlier, Alzheimer’s Research UK announced a £100m research campaign and the Medical Research Council said it was undertaking the world’s biggest study into dementia, involving two million people.
Mr Stewart added: “Developing drugs can take decades, cost billions and people with dementia have all too often had their hopes dashed by clinical trials that end in failure. We need to do whatever we can to clear any roadblocks that stand in the way of getting new drugs to the people who need them.
“However, that’s not to say that drug manufacturers should be allowed to cut corners on safety - people need full information about outcomes of trials and possible side effects so they can assess with their doctor whether a medicine would help them or not.”
Grandfather Ken Clasper, 67, of Chester-le-Street, was diagnosed with dementia more than 10 years ago yet continues to live his life to the full.
He said: “This isn’t just one illness; there are more than 120 variations of dementia so there certainly won’t be a cure-all found when I’m alive. The cost of finding a cure for dementia will be astronomical. We need a lot more money to be spent on finding a cure and I really hope that the pharmaceutical industry will follow David Cameron’s lead and plough more resources into research.
“Dementia has been left behind in comparison with cancer when it comes to research and it is high time this is put right but there will be no quick answers.
“The Government’s announcement is very welcome. We’ve got to be in it for the long haul. I’m normally a cynic on bold announcements like this. I really hope I’m proved wrong for the sake of anyone affected by dementia in the future.”
Mr Cameron said the UK will look at how to bring forward specific proposals on drug patent extensions and how to give patients earlier access to new drugs.
He said: “We are renewing our commitment to say by 2025 we want to find a cure to dementia. We should treat this as a disease rather than as some natural part of ageing.
“We need to develop more drugs, we need to get those drugs to patients faster, we need more international collaboration and, crucially, we need more money into dementia research.
“We are doubling, this year, the amount of money the British Government spends on dementia research to £66m but we need other countries to do the same and to work together.”
He added: “Something like £50m a year is being spent on dementia research, rather than the £590m spent on cancer. It is important to see dementia as a disease and one that we need to understand more of so that we can tackle.”
Health Secretary Jeremy Hunt said more must be done to dispel the myth that dementia is an “inevitable” part of ageing.
He said: “The UK Government is doing what we can. Since 2009 we have increased investment in dementia research from £28m to £52m and we are on target to increase research spending to £66m by 2015. But globally we desperately need to see new investment flowing into dementia research.
“We know from detailed analysis done by the London School of Economics that there is an impelling case both for economic and social viewpoints. That research shows that if treatment were available to delay the onset of dementia by just 36 months, it would save us here in the UK £5bn per annum.
“Currently few people understand what it takes to find a treatment and eventually a cure that works and is also safe. We know it is a fiendishly complicated process that is going to take co-ordination, investment, partnerships from across the many sectors and no doubt many failed attempts to get there.
“We need innovation in finance to enable cutting-edge research as well as identifying and removing barriers that are currently stopping us achieving this.”
The new world dementia envoy, Dennis Gillings, warned that if global leaders do not incentivise businesses to invest in research, the ambition to find a cure by 2025 will not be met.
Dr Gillings said: “Dementia is a ticking bomb costing the global economy £350bn and yet progress with research is achingly slow. Research must become more attractive to pharmaceuticals so they will invest and innovate.
“Just as the world came together in the fight against HIV/Aids, we need to free up regulation so that we can test ground-breaking new drugs, and examine whether the period for market exclusivity could be extended. Without this radical change, we won’t make progress in the fight against dementia.”

Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham...