UK government acts to treat undiagnosed dementia sufferers

An estimated 160,00 people with dementia are left with no treatment because their symptoms are not identified by healthcare professionals, according to new UK government statistics. As a result, the heathcare body NHS England is to tackle what is described as the “shockingly low” dementia diagnosis rates  so that people who are unknowingly living with the condition identified and treated, Health Secretary Jeremy Hunt announced today.


dementiaThe plans, announced as the Prime Minister’s Challenge on Dementia reached its first year, will aim to see two-thirds of people with dementia identified and given appropriate support by 2015, an increase from 39 per cent in 2010 and the current average of around 45 per cent. There are currently 670,000 people with dementia in England but 350,000 of those people remain undiagnosed and without access to support. With the number of people with dementia set to double in the next 30 years and costs expected to rise to £19 billion, improved diagnosis will be key if the system is to cope effectively with the predicted surge in numbers. Focusing on driving up diagnosis will also correct the existing postcode lottery which sees some areas with rates as low as 32 per cent. Currently the best performing local area is identifying 67 per cent of people. The plan is part of the PM’s Challenge on Dementia, bringing together the Government, NHS, social care, research, science and the charitable sector. The Challenge, launched a year ago, is focused on transforming how the country deals with dementia, including: • Research: by 2015 annual funding of dementia research will be increased to around £66 million. • Awareness: A campaign reached more than 37 million people to encourage them to visit the doctor if they are worried about dementia, and one million ‘dementia friends’ will be trained to help support those with the condition. • Diagnosis: £1 million made available for innovative NHS projects to increase diagnosis rates through the Innovation Challenge Prize for Dementia. • Better services: £50 million of funding to adapt wards and care homes for people with dementia and helping to fund a £300 million programme to build or renovate housing for people with long-term conditions, including dementia. Mr Hunt said:“For too long diagnosis rates have been shockingly low, leaving too many people living in the dark trying to cope with this terrible condition undiagnosed, unable to get the help they need and deserve. “Dementia is a serious and growing problem so this ambitious drive to see a clear majority of people identified and supported is a major step forward. I am pleased that NHS England has set a clear direction and sent a message to the NHS that we must do more. I fully support every GP, doctor and health worker who accepts this challenge.” Although the average diagnosis rate across England is now at around 45 per cent, up from 42 per cent in 2010/11, this leaves more than half of people undiagnosed. Hitting the two-thirds ambition will see an extra 160,000 people diagnosed in 2015 compared to the number identified this year. This will bring them the benefits and reassurance of help and support with the condition. The drive to improve diagnosis will be led by local Clinical Commissioning Groups working with local health and wellbeing boards. Supported by NHS England they will be provided with advice on improving diagnosis and setting up additional memory services where they are needed. Dr Martin McShane, Director NHS England said: “NHS England will work with local GO-led Clinical Commissioning Groups and Health and Well Being Boards to improve the quality of care for people with dementia and support for their carers. A diagnosis is the first step to accessing the right care and support for each individual. The Clinical Commissioning Groups have already taken the first steps in addressing this national ambition, with new information, provided by NHS England, to help them understand the scale of challenge at a local level. We will also be sharing best practice and effective ways of meeting the needs of people, once diagnosed.” Launched just over a year ago, the Prime Minister’s Challenge on Dementia was a response to the fact the condition poses one of the biggest tests that society will face in the future. It set out to deliver major improvements in three key areas by 2015. They are driving improvements in health and care; creating dementia-friendly communities that understand how to help; and better research. Today sees the publication of a year-on progress report which sets out what has been achieved and the next steps in driving this work forward for each of the three areas. Health and care work drives improvements in the way people with dementia are diagnosed, treated and cared for. Since last year the following improvements have been achieved: A nationwide call for hospitals to become dementia friendly has seen 140 trusts sign up and commit to taking action to support patients with the condition; A new Enhanced Service for take up by GPs as part of the GP contract for 2013/14 to reward practices for having a pro-active, case finding approach to the assessment of patients who may be showing the early signs of dementia; One hundred and forty eight organisations signed up to a “Dementia Care and Support Compact” committing them to providing high-quality personalised care and support for people with dementia – together they care for people with dementia in nearly 3,000 care settings across the country; and Over the summer, the Government will be announcing the successful bidders who will work with a £50 million fund to create specially adapted wards and care home spaces to improve the experience of people with dementia – using simple changes to improve treatment and the experience of those with dementia. The Dementia Friendly Communities work helps the public to better understand the condition. Since last year it has: Launched the Dementia Friends programme, led by the Alzheimer’s Society and funded by the Cabinet Office and the Department of Health, to deliver the nation’s biggest ever call to action on dementia to create one million friends by 2015. Dementia Friends will use their knowledge in day to day life and some will go on to volunteer to support people with dementia in their community; More than 50 cities, towns and villages are working towards becoming dementia-friendly, for example by ensuring local businesses are aware of the needs of people with dementia and by providing social activities for people with dementia and their carers; ‘Created a symbol – a forget me not flower – which is being displayed by a number of communities working towards becoming dementia friendly who are taking part in a pilot programme. A full national recognition system will be launched in September; and Worked with sports clubs, businesses and emergency services, among others, to encourage organisations to be more dementia friendly. Activities range from the development of a dementia-friendly charter by the financial services industry, to work with schools to help create a more dementia-friendly generation. Jeremy Hughes, Chief Executive, Alzheimer’s Society said: “The past year has seen huge progress in the fight against dementia. We’ve rallied schoolchildren, bankers, doctors, care workers and more to change the way we treat people with the condition. But the fight is not nearly over. Less than half of people with dementia have a diagnosis, denying them the support they need to live well. “Today’s announcement is a welcome step towards fighting that. It’s not just about diagnosis. We need a change in the way society thinks, talks and acts about the disease. Whether signing up to become a Dementia Friend or joining an event this Dementia Awareness Week, all of us have a part we can play in defeating dementia.” The Better Research work aims to use the UK’s unique resources and influence to accelerate research into the condition, to improve treatment and care. This work has meant: A funding boost for dementia research – with more than £22 million of additional funding going to 21 pioneering research clinical and applied health research projects through the National Institute for Health Research (NIHR); The Medical Research Council (MRC) investing £4.5m in new programmes seeking to evaluate the use of existing drugs to see whether they will benefit people with dementia; A major expansion of the neurosciences programmes at the world-leading MRC Laboratory of Molecular Biology, investigating basic biological mechanisms; The creation of the National Institute for Health Research Translational Research Collaboration, which brings together the country’s leading dementia researchers and facilities to collaborate in translating discoveries from basic scientific research into benefits for patients; Early Diagnosis Research: A new pilot project to explore the use of technology to reduce existing diagnosis times by up to 18 months for people in the early stages of the condition has been awarded Government funding. The pilot forms part of the MRC/Technology Strategy Board-backed Biomedical Catalyst. Other projects awarded through this scheme include research to develop novel drugs for Alzheimer’s disease and a new device for the treatment of Parkinson’s disease; Major investment in brain scanning – with £9.6 million provided by the MRC for a pilot study involving 8,000 volunteers, which could eventually see 100,000 participants in the UK Biobank invited to have their brains scanned. The UK Biobank already holds biological data from 500,000 individuals aged 40-69 years. This enhancement will help scientists discover why some people develop dementia and others do not. In support of this, the MRC and the Department of Health recently announced a £20 million investment to fully genotype the UK Biobank cohort, with a specific focus on the genetic profile of risk for the development of dementia; and Hosted a global research showcase in London featuring more than 150 of the world’s key researchers from global pharmaceutical companies and leading universities. Chief Medical Officer, Professor Dame Sally Davies said: “It is an exciting time in research, which is the key to developing effective treatments, transforming care and ultimately finding a way to halt this devastating condition. We are already investing heavily to advance thinking and improve care. “Developing drugs presents real challenges for industry, not only around the basic science but also in the design of clinical research. That’s why we are also pioneering a more co-ordinated approach.” The Care Bill introduces a comprehensive overhaul for social care with new rights for carers, alongside the introduction in 2016 of a cap on individuals’ long-term care costs to make sure that people are protected against catastrophic financial costs, reducing worry for carers or for people with dementia and other conditions. Background information 1. The Dementia Challenge focuses on the three key areas (driving improvements in health and care; creating dementia-friendly communities that understand how to help; and better research). Three Champion Groups are bringing together key leaders and organisations from across the NHS, social care, the voluntary sector and industry to support delivery of specific commitments and actions and to mobilise wider engagement across society. 2. The co-chairs of the Champion Groups are as follows: • Jeremy Hughes and Angela Rippon (Raising awareness and creating dementia-friendly communities); • Sarah Pickup and Sir Ian Carruthers (Improving health and care); and • Dame Sally Davies (Better research). 3. Media calls only to DH press office 020 7210 5375 / 020 7210 5010