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A growing global health problem
Dementia affects an estimated 35 million people worldwide, a figure set to almost double every 20 years. The world’s first G8 dementia summit was held in London on 11 December 2013, bringing together ministers, researchers, pharmaceutical companies and charities to discuss what can be done to:
- stimulate greater investment and innovation in dementia research
- improve the prevention and treatment of dementia
- improve quality of life for people with dementia
Ministers agreed action
Ministers from each of the G8 countries delivered prepared statements during the first session of the summit. In the declaration and communiqué resulting from the summit, the G8 ministers agreed to:
- set an ambition to identify a cure, or a disease-modifying therapy, for dementia by 2025
- significantly increase the amount spent on dementia research
- increase the number of people involved in clinical trials and studies on dementia
- establish a new global envoy for dementia innovation, following in the footsteps of global envoys on HIV and Aids and on climate change
- develop an international action plan for research
- share information and data from dementia research studies across the G8 countries to work together and get the best return on investment in research
- encourage open access to all publicly-funded dementia research to make data and results available for further research as quickly as possible
Dementia – the challenge the world faces
The huge health and economic challenges dementia poses to the world were set out in the opening session. Delegates heard that these global challenges must be met through innovation. And governments, regulators, and the private and non-profit sectors need to work together to spark innovation.
Jeremy Hunt, Secretary of State for Health, England, outlined the human and economic costs. Here are some extracts from his speech. You can watch the full speech below.
“As life expectancy goes up, our generation has a unique challenge… One in three of us will get dementia. And if we don’t do better, for one in three those later years could be years of agony, heartbreak and despair… Thanks to [commitments made at the 2005 G8 summit in Gleneagles and the research that has followed] we have turned the global tide in the battle against AIDS. Now we need to do it again.
“We will bankrupt our healthcare systems if we don’t. Here in the UK the cost of dementia is £23 billion and globally it’s approaching $600 billion… But the real reason to do something about dementia is not financial. The real reason is human. Everyone deserves to live their final years with dignity, respect and the support of loved ones…
“Right here today we have the ‘A team’… health ministers, science ministers, pharmaceutical companies, researchers, voluntary organisations, the OECD, and the WHO and… people themselves who have dementia and have had the courage to come today. Let us… match their courage by daring to aim big… to turn one of humanity’s greatest threats into one of its greatest achievements.”
In a wide-ranging speech, Dr Margaret Chan, Director General, World Health Organization (WHO), emphasised the urgency of the problem, and urged delegates at the summit to take a strong lead in the fight for a cure. Here are some extracts from her speech. You can watch the full speech below.
“I can think of no other condition that places such a heavy burden on society, families and communities and of course the economy. I can think of no other condition where innovation, especially breakthrough innovation, is so badly needed…
“[Dementia] is not just a public health priority. It is a public policy priority… The situation is by no means hopeless… but the alarming trend in terms of numbers affected and of course the cost… is reminding us that much more needs to be done… I have to say in terms of cure, or even a treatment that is going to modify the disease, we are empty handed… Innovations to improve care and social support are greatly needed… The good news is… healthy diet, regular exercise, cessation of smoking can help to support brain function and have a protective effect and… these are also risk factors that cause heart disease, cancers and lung disease…
“Research on dementia has been neglected because of multiple reasons… This is important that we bring the efforts of all countries and researchers together… Today you [the G8 ministers present] are turning things around and saying something can be done… When the private sector… does not want to invest in R&D [research and development] we need to look at why… And when [the] market fails, we require strong leadership… You are stepping in to take the slack and making sure people affected by such devastating disease can have the hope that they need…
“We [WHO] will do our utmost as part of our job to support countries to implement a comprehensive mental health action plan and dementia is prominently featured in that… plan…
“Ladies and gentlemen please change the world…”
Yves Leterme, Deputy Secretary General, The Organisation for Economic Co-operation and Development (OECD), said the world’s leading countries must apply the same innovation and energy to dementia that has helped tackle other big killers. Here are some extracts from his speech, or watch the full speech below.
“Today across… the OECD countries, the most industrialised countries in the world, about 5.5% of people aged over 60 live on a daily basis with dementia… And worldwide estimates suggest that as many as 36 million people live today with dementia, with just over 40% of them in high-income countries. And these numbers… are set to triple… by 2050. And according to Alzheimer’s Disease International… every day every 4 seconds someone somewhere develops dementia.
“These are of course very alarming figures, and today there is no treatment that can halt dementia, no pharmaceutical or other intervention that can alleviate the symptoms of dementia, slow the progression or cure the disease.
“[The] OECD countries are making significant progress in reducing mortality and disability from the big killers such as heart disease and cancer, but when it comes to dementia we still have too little to celebrate. So the question is…why have treatments been developed for other conditions and not for dementia?”
He went on to set out what governments can do, covering issues such as opportunities in biotechnology, genomics and nanotechnology, offering rewards to the pharmaceutical industry that match the scale of the challenge, the informatics revolution, the need for health and social care systems to do better in delivering care for people with dementia, prevention, and the need to support carers effectively.
Peter Dunlop is a former consultant obstetrician, now living with dementia. He received a standing ovation for his speech giving a personal insight into life with dementia. Here are some extracts from his speech, or watch the full speech below.
“I had concerns that something was going wrong in the autumn of ‘08 when I was in my mid-fifties… after episodes of forgetfulness… [When the diagnosis of Alzheimer’s disease was confirmed] I was aware of what that meant and the implications for my future, and for my wife and family, and that there was going to be some tough going…
“I was fortunate to have had a quick diagnosis. Others have gone undiagnosed for many years. I’ve met several people in their fifties who’d had some years of symptoms before the diagnosis was made. This caused them an awful lot of stress, especially when they were told they were depressed, neurotic or lazy. They had previously held high-powered jobs and had been written off through ignorance.
“Having a diagnosis was a relief tempered by the unknown, having to sort out sudden retirement and finances with an unknown prognosis…
“I’m now a member of an excellent group of people with dementia, which provides support for younger dementia sufferers and fulfils a valuable role… helping others to understand what it’s like to live with this disease.
“Every day [living with dementia] produces challenges – even the simplest things can cause confusion… and frustration. Life has to be ordered to try and remember what happens when, where everything is, who’s going out at what time… As for the future… at the moment I’m continuing to enjoy my life. I still drive and above all I’m still fishing.
“As an ambassador of the Alzheimer’s Society, I do hope that this summit is a success… a huge number of people around the world are all looking at us today and hoping to have future research to improve the outcome [for people with dementia]. And I’m sure you won’t let us down.”
Dementia Voices films
Throughout the summit, a series of 5 short films were shown featuring people affected by dementia talking about their experiences and thoughts about the future.
The films feature:
- Carla Alao, who works with people with dementia
- Jan Hall, who cared for her mother who had Alzheimer’s disease and wrote a guide book for carers of people with dementia
- Beth Britton, who cared for her father who had vascular dementia, and is now a dementia campaigner, consultant and blogger
- Hilary Doxford, who has Alzheimer’s disease, and her husband Peter Paniccia
- Trevor Jarvis, who has vascular dementia
- Peter Dunlop, who has Alzheimer’s disease
- Ann Johnson, who has Alzheimer’s disease
Discussion 1 – improving life and care for people affected by dementia, and their carers
The second Dementia Voices film, where Beth Britton talks about her dad and dementia, was shown at the start of Discussion 1.
- Dr Yuko Harayama, Council of Science and Technology Policy, Cabinet Office, Japan (Chair)
- Dr Paul Litchfield, BT Group
- Harry Johns, Alzheimer’s Association
- Dr Kristine Yaffe, University of California, San Francisco
- Ketan Paranjap, Intel
The panel was drawn from government, academia and the private and charity sectors, embodying the clear message that we all have a part to play in improving care for people living with dementia. The discussion ranged from commercial innovation, to the enormous potential of existing data, and creating compassionate communities.
In the question and answer session, delegates raised issues about evaluating the most effective way of caring for people, including keeping people out of hospital and in their own homes, setting standards, and valuable non-medical approaches.
You can watch the full discussion and the question and answer session on the recording of the live stream.
Discussion 2 – preventing and delaying dementia
The third Dementia Voices film was shown at start of Discussion 2. It features Hilary Doxford and her husband Peter Paniccia.
- Professor Simon Lovestone, King’s College London (Chair)
- Dr Francis Collins, US National Institutes of Health
- Dr Maria Isaac, European Medicines Agency
- Andrea Ponti, JP Morgan
- Dr Edo Richard, Academic Medical Centre, University of Amsterdam
- Dr Paul Stoffels, Janssen Pharma
Professor Simon Lovestone set a hopeful tone for the discussion he chaired, saying that he remembered at the turn of the century when people said we were 10 years away from a therapy, whereas he said that now he hears we are 5 years away. He said that although phase 3 clinical trials haven’t been successful, we have learnt about dementia and we can see some sort of way forward.
The speakers covered areas such as:
- areas of improved understanding about the brain and dementia in biomedical research
- advances in stem cell biology that allowed the study of differences between the neurons of someone with dementia and someone without
- the benefits of taking a public health approach to dementia and prevention
- the model of collaboration between industry and others that transformed HIV treatment
- how to make investing in a risky area of research more attractive to investors
- the importance of the regulatory response
In the question and answer session, partnership, regulation and investment emerged as vital issues. Several delegates made a plea for scientific coordination. You can watch the full discussion and the question and answer session on the recording of the live stream.
Discussion 3 – social adaption to global aging and dementia
The fourth Dementia Voices film, featuring Trevor Jarvis, was shown at the start of Discussion 3.
- Vivienne Parry (Chair)
- Will Norman, Nike
- Paul Wicks, PatientsLikeMe
- Alan Davies, Philips Healthcare
- Mila Kivipelto, Karolinska Institute
- Raj Long, GE Healthcare
This discussion focused on how society needs to adapt to an ageing society and how to reduce the impact of dementia. The original chair of the discussion, Robert Greenhill from the World Economic Forum, was delayed, so summit facilitator Vivienne Parry chaired.
Will Norman said that we know physical activity is one of the strongest mitigating factors in preventing dementia. The problem is that levels of physical activity are falling dramatically, while the incidence of dementia is doubling every 20 years. So, he said, we need to think about a long-term strategy to increase physical activity and communities need to be involved.
Paul Wicks spoke about the potential power of patients sharing information and experiences through open platforms. Alan Davies of Philips Healthcare said we need to put more emphasis on technological solutions, which will require collaboration on a massive scale. He urged delegates not to forget the “the little inventors”, asking: “How can we get their solutions to market quicker?”
Miia Kivipelto drew on her understanding as a senior geriatrician to emphasise the importance of encouraging healthy lifestyles to help prevent dementia. Raj Long of GE Healthcare put the focus on the people caring for those with dementia and the prospect of collaboration between G8 countries to formulate best practice guidelines for better care for people with dementia.
In the question and answer session, delegates brought the discussion back to effective research, including increasing the proportion of people with dementia participating in research and the prospect of worldwide trials that bring together many different pharmaceutical companies.
You can watch the full discussion and the question and answer session on the recording of the live stream.
Keynote address – David Cameron
David Cameron, UK Prime Minister, urged governments, industry and charities to commit greater funding and collaborate to tackle dementia. He said he wanted UK life sciences to play a leading role in innovation, including plans to take brain scans of 100,000 people through Bio Bank to spot early signs of dementia. He told the summit: “this disease steals lives, it wrecks families, it breaks hearts.” But he saw hope in leading scientists, politicians and thinkers from around the world coming together at the summit to pledge action. He said:
“In generations past, the world came together to take on the great killers. We stood against malaria, cancer, HIV and AIDS and we are just as resolute today. I want [11 December] 2013 to go down as the day the global fight-back really started…”
Jeremy Hunt, Secretary of State for Health, England, thanked everyone who had come together to make the summit possible and particularly those people who had shared their experience of living with dementia, either in person or on film. He closed the summit with a quote from Nelson Mandela:
“‘It always seems impossible until it’s done.’” And he continued, “So ladies and gentlemen, let’s do it.”
Legacy activities in 2014
In a session at the end of the day, representatives from Japan, Canada and France, England and the US spoke about the events planned for 2014 to continue the legacy of the summit. To find out more about the ongoing work on Global Action Against Dementia, including the World Dementia Envoy, visit the Dementia Challenge website.