Recommendations to reshape policy making
ALZHEIMER’S DISEASE REPORT
Tackling Alzheimer’s disease in Europe Strategies, interventions and challenges
brain talks... action plan to fight alzheimer’s Paola Barbarino, Chief Executitve, Alzheimer Disease International calls on governments to develop a joint policy agenda charity voice Mathew Norton, Director of Policy at Alzheimer’s Research UK says charities and governments must join hands to strengthen the fight against the neurological disorder the maltese approach Hon. Dr Justyne Caruana MP, Minister for Gozo discusses the country’s policy challenges in managing the neurodegenerative disease and offers policy recommendations for fellow member states urgent action required Heinz Becker MEP says now is the right time for political action across the EU alzheimer’s and air pollution As evidence slowly builds that dirty air might cause Alzheimer’s, Keith Taylor MEP urges for an explorative study of the link between air pollution and the disease the scottish strategy Scottish Minister for Mential Health, Maureen Watt MSP details Scotland’s national dementia strategy and discusses where are we now state of care Nessa Childers MEP makes an assessment of the current state of dementia care across Europe doing things differently Francesca Colombo, Head of OECD’s Health Division and Elina Suzuki, Health Policy Analyst at OECD note that a future cure requires action aimed at doing things differently solving the dementia challenge Kathleen D’Hondt, Policy Advisor, Dept of Economy, Science and Innovation, Flemish Government offers recommendations to help solve the dementia challenge across Europe the french perspective Joël Jaouen, President, France Alzheimer presents the association’s strategy that focuses on the six major challenges of managing Alzheimer’s in France the funding challenge Colin Capper, Head of Research Development, Alzheimer’s Society, writes about how the charity is addressing the funding challenge search for the alzheimer antidote VIEWPOINT: Biogen and Eisai write about their search for new medicines to treat the progressive neurodegenerative disease
healthcare
ICPS Alzheimer’s Europe Roundtable
Reformulating the approach to managing Alzheimer’s in Europe On the 13th of July 2017, the International Centre for Parliamentary Studies convened the Alzheimer’s Europe Roundtable to create a platform to examine Alzheimer’s disease in Europe from a multi-sector perspective and to address key policy challenges relating to the care and treatment of the disease. JOSHUA WHITE, Research & Development Manager at iCPS, offers insight into the key recommendations proposed by the delegates of the roundtable
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lzheimer’s disease is fast emerging as one the most pressing and daunting public health challenges in both Europe and around the world. The cost of dementia in Europe is forecast to rise to over $250 billion by 2030, with an estimated 14 million individuals living with dementia. Over the last two decades, Alzheimer’s disease has begun to take a place of priority on the European health policy agenda. Despite this progress, many practitioners and stakeholders agree that more needs to be done to raise awareness and develop standards of treatment and care. The ICPS Alzheimer’s Europe Roundtable brought together representatives from the European Parliament, the European Commission, members of national Alzheimer’s associations, leading clinicians in the fields of psychology and neurology, and key industry stakeholders to formulate a strategy to better manage the disease in Europe. Lobbying national governments A central theme to emerge from the roundtable discussion was the need to lobby all European national governments to implement comprehensive national dementia strategies
alzheimer’s europe
Brussels, Belgium
2017
in order to effectively manage Alzheimer’s disease and provide a framework of care for those who suffer from it. Roundtable participants highlighted the divide between East and West Europe when assessing the prevalence and quality of national dementia strategies. Whilst Western Europe has made substantial progress implementing national dementia strategies, this progress has been less pronounced among Eastern European nations. As such, roundtable participants highlighted the need to lobby and collaborate with Eastern European Governments to raise awareness and encourage the uniform development of national dementia strategies across the continent. Striking a balance between cure and care The development of neuroimaging, biomarker
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indicators, brain plasticity and disease modifying treatments point towards a future where successfully treating and preventing Alzheimer’s could be a reality. However, roundtable participants stressed that we cannot pursue preventative treatments whilst concomitantly neglecting our responsibility to improve the quality of life for those living with dementia through investing in care-systems and supporting caregivers. Given the nature of the challenge posed by Alzheimer’s disease in Europe, it is vital to formulate strategies and initiatives to combat the disease. With this in mind, delegates of the roundtable put forth the following recommendations: • Policy makers should urge national governments and local authorities to incorporate national dementia strategies; • Encourage more
event roundup The enduring sentiment of the day was that although Alzheimer’s disease has begun to take its place on the agenda of policy makers as a significant social, political and economic issue, more needs to be done to raise awareness, and to further establish the disease as a public health priority, both in Europe and globally so. To truly spread Alzheimer’s awareness to all communities, we must engage on a community level; in churches or by holding educational café events; • We must identify a consistent model for care planning which puts the patient at its heart. Clinicians must be aware of how to effectively involve their patients in their care;
collaboration on a global scale. We have the tools to do this;
comprehensive national action plans and ensure that they translate into positive practical action by setting targets and measuring progress; • More funding. Consider increasing umbrella funding for brain research, which will undoubtedly positively effect Alzheimer’s funding; • We must focus on raising awareness as well as early intervention and treatment; • Hard Brexit would be damaging, we need UK expertise - 70% of our projects are led by UK research – We must have them on board to instigate effective change; • We cannot succeed working in silos. Coordination and cooperation between clinicians, local authorities and the public and private sectors is imperative. We must also allocate a significant focus on cross border and interdisciplinary
• A three-pronged approach is necessary to tackle Alzheimer’s disease effectively: Psychosocial preventative care and research, symptomatic care to manage and support individuals with Alzheimer’s, and the development of disease modification treatments. We must think about how to pullthrough promising innovations and drug treatments and get them through to patients in the national setting; • We must pursue new innovations in research but equally remember that we haven’t had a significant breakthrough on this in thirty years. We must, therefore, focus on what we know we can do. We can provide appropriate social care for dementia sufferers and allow individuals to ‘live better with dementia’. Policy makers must acknowledge and retain this balance between optimism and realism; • Half of people who find out they have a cognitive deficit do not seek further advice. The education component is vital. We must focus on pathways after diagnosis and create better linkages with social care systems; • We must improve the present and prepare for the future. In
the present, we must improve care-systems; focusing on the psychological aspects of dementia care and support caregivers more effectively. With regards to the future, we must explain to policy makers that there may be breakthroughs in the future. We must, therefore, continue to fund research; • Our GPs are overworked. Should they be able to deal with Alzheimer’s patients, it has to be more time effective. The waiting time for a neurologist in Slovenia, for example, is a year and a half. We either employ more, or make the diagnosis and treatment process more time effective; • 70% of all care is done within families. It is vital, therfore, that we emphasise the training and support of these caregivers. We must also emphasise the role of men in this capactiy; • Research is needed in how we support caregivers effectively. We must advocate a focus on the psycho-social implications of Alzheimer’s. We can do this by focusing on mental disorders more broadly as many mental disorders overlap such as Alzheimer’s and depression. • Education is key. We have made progress reducing the stigma surrounding the disease; however, we must continue to do
• We need to assess why the research done so far has not yielded more positive results. We must examine the failures and inefficiencies of previous research, and determine how to optimally utilize available funding to conduct research in a more efficient manner Delegates present at the iCPS Alzheimer’s Europe Roundtable included: President, Alzheimer Europe Board member, Ligue Alzheimer, Vice-President, Federal Chamber of Psychotherapists, MEP, Alzheimer’s Alliance, European Parliament, Policy Advisor, Flemish Government – Department of Economy, Science and Innovation, Director, Radboud University Nijmegen Medical Centre, Professor of Neurology, President, Academic Medical Centre, Health Council of the Netherlands, Head of Sector - Neuroscience, European Commission, DG Research & Innovation, Head of Neurology, Ljubljana University, Professor of Neurology, Director, University Salpêtrière Hospital, Institute for Memory and Alzheimer Disease, Policy Analyst, Organisation for Economic Co-operation and Development, Scientific Development Unit, European Commission, Joint Research Centre.
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healthcare
Fight against Alzheimer’s - Where are we now?
Paula BARBARINO CEO, Alzheimer’s Disease International
ADI’s action plan to fight Alzheimer’s disease Paola Barbarino, CEO, Alzheimer’s Disease International addressed the World Health Assembly on the eve of the adoption of the global plan on dementia in May 2017. This September, she is calling for governments to translate global action into local change
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eptember is World Alzheimer’s Month, the global campaign led by Alzheimer’s Disease International and Alzheimer associations in over 90 countries to raise awareness of dementia. As part of the campaign this year, we are calling on all members of the public to recognise the symptoms and challenge the stigma associated with the disease. We are also asking governments to act by developing a tailored national response to the challenges posed by dementia care, science and research in their countries. In Europe, dementia affects over 10 million people; approximately
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In 2018, dementia will become a trillion-dollar disease – costing the global economy more than heart disease or diabetes.
one in five people over the age of 80 or one in every 20 people over the age of 65. Diagnosed in approximately 50% of cases in high income countries, dementia is the only major chronic disease area without a cure. Increasing coverage of diagnosis, and quality care, is therefore essential. Faced with a rapidly ageing population, Europe must do more to provide equitable, accessible care for those affected, their families and care partners. In 2018, dementia will become a trillion-dollar disease – costing the global economy more than heart disease or diabetes. The World Alzheimer Report 2016 shows that strengthening the healthcare response to dementia, a key component of national plans, can reduce this cost by up to 40%. Increased attention to prevention of dementia through awareness of risks including inactivity, smoking and isolation can also lower the impact of
the condition, as well as help reducing the impact of other non-communicable diseases such as diabetes, heart disease and depression. Since 2005, there have been 30 national plans to address dementia. These contain guidance for raising awareness, training of health professionals and care partners, diagnosis and access to treatment, coordination of care and for research. The focus is of course on the individual needs of the population of each country. The global plan on dementia adopted by the World Health Organisation in 2017 echoes the message that more is needed, and includes a target for 145 plans by 2025. In Europe, dementia plans have been established in 16 out of 44 states and countries. Measured against the strategic priorities of the global plan in the 7 areas of public health prioritisation: awareness, risk reduction, diagnosis, support, information systems and research, most contain elements of just three of these. Those in the Netherlands, Norway and the UK (England and Scotland) are the only plans to address the important issue of research and innovation for improving understanding, care and treatment of dementia. In addition, ADI recommends that at least 1% of the societal cost of dementia in each country is invested into research. Plans must be effectively funded with a commitment to meet and monitor the targets set. In Scotland, the third national plan on dementia, published in June 2017, contains a chapter entitled ‘Where we are now’. I urge that other countries in Europe adopt a similar approach to ensure that plans, where implemented, are kept alive in both practice and planning.
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Mathew NORTON Director of Policy, Alzheimer’s Research UK
Achievements of these plans include significant steps forward in the realisation of dementia friendly communities and initiatives. Recognition of the rights and importance of including people living with dementia in the matters that affect them, including working rights, legal counsel and access to support, has led much of this process. There is much to look forward to. The adoption of a global plan opens the door of a new era for dementia in Europe. Policy makers and stakeholders, including Alzheimer associations and people living with dementia, can use this framework to demand that governments act. World Alzheimer’s Month is an exciting time to join the global campaign for this change. Join us on World Alzheimer’s Day, 21 September by asking what your government can do now to raise awareness and prioritise dementia
Governments must join hands with charities
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oday, there are 850,000 people living with the condition in the UK – with thousands more loved ones left heartbroken by the destruction it causes. This may still come as a surprise to many, but dementia is the leading cause of death for women in the UK and second biggest killer of men. What makes this challenge even more urgent is the broader effect dementia has on a person’s ability to manage a range of other chronic health conditions, particularly in later life. There is also a huge financial cost – dementia costs the UK economy £26billion each year. As our population continues to age, and prevalence of dementia increases, these costs will only continue to rise. Even though this may seem like a frightening reality, we know that through the power of research we can defeat dementia. We are closer than ever before to discovering the breakthrough we desperately need – thanks to a muchneeded commitment to research and a renewed political focus in recent years. At Alzheimer’s Research UK, we’re working to bring about a life-changing treatment for dementia – but this will only happen if the momentum we’ve built continues. The last government propelled dementia into the spotlight, doubled investment in research and made the condition a national priority – and we’ve made significant progress since the first Prime Minister’s Dementia Challenge was launched in 2012. Recent analysis shows that
there are double the number of dementia researchers and scientific publications, compared to six years ago. While there is still only one dementia researcher for every four cancer researchers, that’s an improvement on the previous figure of one in six. Alongside this, the UK Dementia Research Institute has been established and is firmly underway, bringing together scientists from across the UK in a dedicated effort to defeat dementia. But lately it’s been a turbulent time in politics and there’s concern that without support, our progress could come to a grinding halt, particularly as Brexit negotiations start to dominate the agenda. In this uncertain political climate, we must hold our government to account and not let dementia fall by the wayside. Thanks to the advances made over the past few years, the foundations are in place to deliver the life-changing treatment we need. The UK Department of Health has promised to deliver the Challenge on Dementia 2020, and we were pleased when the Conservatives made another commitment to investing in dementia research in their manifesto. At the G8 dementia summit in 2013, the UK signed up to an ambition to find a disease-modifying treatment by 2025. If we are to achieve this vision, we need a long-term strategy taking us past 2020, as well as a commitment to activities that were started before the general election. This includes the government’s response to leading academic Sir John Bell’s Accelerated Access Review, which examined how to
speed up the way new medicines are made available. A series of recommendations were published at the end of last year and we are still waiting to hear whether the government will adopt these recommendations – a decision that will be important for getting future dementia treatments to those that need them. In January, proposals were unveiled for an Industrial Strategy that would include investment in life sciences as one of its 10 pillars. This provides an important opportunity to bolster UK dementia research, so it will be critical to get the detail of the plan right. Only through funding research and enabling collaborations will we be able to bring an end to the heartbreak caused by dementia. As we embark on Brexit negotiations, the government must ensure scientists don’t lose out on valuable funding, or find themselves unable to participate in crossborder collaborations. Similarly, we will be seeking assurances about the positions of talented scientists from the EU who are carrying out important dementia research in UK labs. In our lifetimes, we’ve seen incredible progress with other serious health conditions like cancer and HIV/Aids – dementia can no longer be the underdog. We are seeing reports that life expectancy is slowing for the first time in many years, and people are now living more of their later years in poorer health, because of conditions like dementia. Today, if we continue to build on recent progress, we have a fighting chance of defeating dementia and transforming the way this cruel condition impacts people for generations to come. Our government must stand with us in this fight
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healthcare
Joint agenda against Alzheimer’s
Hon. Dr Justyne CARUANA Minister for Gozo and former Minister for Mental Health, Malta
Malta’s proactive approach against Dementia
supports and accepts people with dementia as worthy members of society.
Malta recently collaborated with the European Commission to convene the EU Governmental Experts Group on Dementia to discuss current and future developments in dementia treatment and care. Hon. Dr Justyne Caruana MP, Minister for Gozo discusses the country’s policy challenges in managing the mindrobbing disease and offers policy recommendations for fellow EU member states
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alta is the smallest country in the European Union and as with the rest of other European countries, it has a growing elderly population. With this comes the challenge of dementia which will inevitably place an enormous burden on our health and social care systems. There are over 6,000 individuals with dementia in Malta, equivalent to 1.5% of the Maltese population. This figure will increase to 3.5% by the year 2050. There is little doubt that dementia is seriously undermining the social and economic development globally as highlighted in the first WHO Ministerial Conference on Global Action Against Dementia in 2015. People with dementia, their caregivers and family members face a significant financial burden in terms of health and social care as well as loss of income. One of the biggest priorities for Europe in its fight against dementia should be to shrink the gap between the need for prevention, treatment and care and the actual provision of services that are needed for people with dementia and their caregivers. Dementia is under-diagnosed and long-term pathways are often fragmented or non-existent. Lack of understanding and awareness of dementia are often to blame leading to stigmatisation and barriers to diagnosis and care. www.governmentgazette.eu | 30
People with dementia are frequently denied their human rights in both the community and long-term care settings. Malta took a proactive approach to tackle the challenge of dementia. In 2015, we launched our dementia strategy that focuses on a number of interventions aimed at improving the quality of life of individuals with dementia, their caregivers and family members. A number of initiatives have been launched including training programmes to formal staff, the opening of a new dementia activity centre in the sister island of Gozo, extension of the dementia helpline, the launch of the dementia intervention team and the piloting of a dementiafriendly village, amongst others. During our Presidency, Malta together with the Netherlands and Slovakia who held the preceding Presidencies for the Council of the European Union in 2016 signed a joint statement calling upon the European Commission to: - Promote and support international cooperation in dementia research and improve the coordination of existing European research programmes - Promote and support the exchange and implementation of best practices in dementia care, diagnosis and prevention - Promote and stimulate the development of a society that
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There are over 6,000 individuals with dementia in Malta, equivalent to 1.5% of the Maltese population.
We also urged our fellow EUmember states to: - Promote, participate and support international cooperation in dementia research - Work together in the exchange and implementation of good practices in the field of dementia - Support individuals with dementia to have the best possible quality of life, to live with dignity, participate in society in accordance with their human rights and accept them as worthy members of society - Support patient advocacy by national and international Alzheimer organisations. As part of its programme of its Presidency of the European Union, Malta also collaborated with DG SANTE of the European Commission to convene the EU Governmental Experts Group on Dementia in Malta in May to discuss current
and future developments in dementia including the fostering of further collaboration in dementia across all EU-member states in order to be better prepared to face the dementia challenge. This meeting included a tour de table of national health ministry representatives from twenty European countries presenting their latest national initiatives in the dementia field. The meeting was also an opportunity for the national representatives to be updated about the progress of the European Union Joint Action on Dementia and its focus on timely diagnosis and post-diagnostic support, care coordination, residential care and dementia-friendly communities, as well as about other international efforts by the World Health Organisation and its global action plan on dementia and global dementia observatory and by the Organisation for Economic Cooperation and Development and its work on care indicators in dementia. A side event of the Experts’ Group meeting was a visit by the EU Presidency Trio representatives to Gozo to demonstrate the effective and holistic approach towards dementia friendly communities. Apart from the European dimension, Malta believes in a coordinated global approach to dementia. We co-sponsored a side event about dementia in Geneva in 2016 during the 69th World Health Assembly organised by the World Health Organisation. Furthermore, we have actively encouraged and supported the drafting of the WHO Global Action on Dementia that aims to encourage nations to truly commit themselves towards working out a comprehensive and holistic approach to dementia
parliament perspective
Heinz BECKER mep
Member of EPP Group at the European Parliament
Now is the right time for political action across the EU
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pproximately 6.4 million people are living with dementia in the European Union and every year 1.4 million Europeans develop some form of dementia. These numbers are expected to rise quickly in the next four decades. Alzheimer’s disease, a special form of dementia, is one of the most pressing public health challenges in Europe. A majority of European citizens will have to cope with this disease during their lifetime, either as patient or as carer in their families, as caregivers and as the whole society. We will all be deeply affected by this disease. Hence, this disease comes with substantial social and economic implications for every European!
Recent promising studies presented at the ICPS Alzheimer Europe Roundtable in Brussels have shown that improved cardiovascular conditions and higher education levels can lead to a reduction in national dementia cases. Furthermore, there is great potential that biomarker-technics could lead to early detection from 40 years on.
First of all, we must not forget those of us who are dealing with this disease every day. Alzheimer’s Disease often leads to stigma, discrimination and isolation. It is of utmost importance to protect their human rights as patients and carers and to raise awareness in society as a whole. In particular, we have to focus on the elderly, who are highly endangered to develop some form of dementia as the major cause of disability and dependency. We must not accept Alzheimer’s Disease as a normal part of ageing!
We need public campaigns run by the governments of all EU member states - as it is not the EU’s but national legislative competence - not only to raise awareness about the disease, but also to foster research developments and to consequently establish best practice in treatment by focussed risk reduction, early diagnosis as well as timely intervention.
Never miss the present chances In order to consequently combat Alzheimer’s impacts on our society and at the same time to support the new medical and pharmaceutical scientific developments, we have to focus on the priorities and we have to be fast.
This means prevention and early diagnosis are the main keys. Thanks to intense scientific research on Alzheimer’s Disease, there is a high probability that we will be able to combat Alzheimer Diseases more efficiently in future. Governments of EUmember states have high responsibilities
It is our national governments’ responsibility to continue building a “dementia-friendly” Europe by ending stigma, discrimination and isolation of patients and carers, and adapting and developing a responsive and inclusive environment.
accountable and increase the pressure on all those among the EU 28 who have not yet created a National Alzheimer Strategy. As next steps in terms of policy action on European level, I want to follow up two specific ones: 1. An “Alzheimer EUCoordinator” should be installed to synchronise the various activities in the different DGs of the European Commission, reaching from Health to Research, Innovation and Care. 2. An EU-framework should be built in order to pool the expertise and efforts in Europe and to strategise on how to provide the best and most costeffective services that adequately meet the needs of individuals and families who suffer in Europe. Now is the time to act. Combating Alzheimer’s Disease and other types of dementia has to become a top priority of the European Union by putting further emphasis on cooperation within all member states in areas of research, care and prevention. Fully supporting Alzheimer Europe on their ambitious way, I am absolutely determined to set next steps still in 2017 to follow up our mutual goals together with other members over all political groups in the European Parliament
To reach this goal on a European level, all European institutions, especially the European Commission and European Parliament, have to hold national governments Government Gazette | 31
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healthcare
Joint agenda against Alzheimer’s
Keith TAYLOR mep Vice Chair, European Alzheimer Alliance, Member of the Green Group at European Parliament
Air pollution and Alzheimer’s disease The link between air pollution and dementia remains controversial, but evidence slowly builds that dirty air might cause Alzheimer’s. As a growing number of epidemiological studies have raised alarms, Keith Taylor MEP, Vice Chair of the European Alzheimer Alliance, notes that the exploration of any such link should be made a priotity for policymakers and researchers alike
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n Britain, poor air quality is linked to 40,000 deaths every year; it’s a public health crisis that runs up a bill of almost £30bn annually – paid for from the taxpayers’ pocket. The biggest source of the two main types of air pollutants is road transport, accounting for 31% of nitrogen oxides (NOx), 18% of PM10 and 19.5% of PM2.5 emissions in the UK - particles less than or equal to 10 micrometres and 2.5 micrometres in diameter, respectively. At urban monitoring sites, road traffic accounts for more than 64% of air pollution. The headline figures are both stark and vital for illustrating the scale of an issue that has encouraged only apathy from a Conservative government whose latest air quality plan has been found wanting – yet again. But the big numbers obscure some of the lesser known impacts of the air pollution crisis. From children to the elderly, from those suffering with respiratory and heart diseases to the disproportionate effects on the poorest residents and those least responsible for contributing to the problem, the myriad ramifications of toxic air are often underreported – people prefer the simplicity of big numbers. Hidden yet further beneath www.governmentgazette.eu | 32
those marquee statistics, however, is a burgeoning area of air quality research exploring a possible link between air pollution and Alzheimer’s disease. Alzheimer’s is a progressive brain disease that eventually strips sufferers of their ability to remember, communicate and live independently. It currently affects almost a million people in the UK and is the most common type of dementia. More than 200,000 people will develop Alzheimer’s this year, that’s one every three minutes. The cost of dementia in the UK has risen to more than £25bn a year. People living with the disease and their families shoulder two-thirds of the burden while unpaid carers do the equivalent of £11bn worth of work every year. Alzheimer’s disease and dementia is the leading cause of death for women in England and the second biggest cause of death for men. There is no cure for Alzheimer’s disease or any other type of dementia. However, delaying the onset of dementia by five years would halve the number of deaths from the condition and save 30,000 lives a year. As a member of both the
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Urgent and bold action on air pollution will, at best, help prevent thousands from developing Alzheimer’s disease while reducing both the unnecessary premature deaths of 40,000 Britons and the associated public health bill.
European Parliament’s Public Health and Transport committees and vice chair of the European Alzheimer’s Alliance, it is clear to me the exploration of any link between air pollution and Alzheimer’s should be a priority for policymakers and researchers alike. The latest research published earlier this year finds particulate pollution (PM2.5), the tiny ‘dust’ particles less than the width of a hair produced from vehicle breaking, grinding operations, and as a byproduct of combustion that penetrate deep into the human body, can nearly double the risk of women aged 65 to 79 years developing Alzheimer’s. The research by academics at the University of Southern California is the first of its kind to demonstrate that air pollution interacts with a so-called ‘Alzheimer’s risk’ gene - APOE4 - to accelerate brain ageing. The University of Southern California research is not the first, however, to reveal a link between particulate air pollution, cognitive ageing and Alzheimer’s. Researchers at the University of Toronto, also earlier this year, reported in perhaps the most respected medical journal, The Lancet, that among the 6.6 million inhabitants of Ontario, those living within 50m of a major road were 12% more likely to develop dementia than those living more than 200m away - the difference in particulate pollution levels at these distances can be tenfold. While, in 2017, academics and researchers are at the cutting edge, the origins of the field can be traced back to 2008 when a study in Mexico found a correlation between the neurodegeneration in dogs - and the presence of amyloid, a protein linked to Alzheimer’s - and the levels of air pollution in Mexico City. The neuroscientist leading the study, Lilian Calderón-Garcidueñas, also found a similar pattern of neurodegeneration in children and young adults. However, CalderónGarcidueñas’s studies didn’t have rigorous controls or account for the fact that the presence of
amyloid, although linked with the disease, doesn’t necessarily signal Alzheimer’s. Another study conducted in Mexico and the UK last year found magnetite – a potentially toxic particulate byproduct of traffic pollution – in samples of brain tissue from 29 people from Mexico and eight from Manchester. The analysis suggested Magnetite may increase molecular level damage to brain cells, especially in the presence of the same key protein linked to Alzheimer’s disease. However, none of the people studied had Alzheimer’s and only a handful had suffered from a neurodegenerative disease. It is important to be clear that no study has yet to establish how particulate matter pollution might enter the brain or exactly how it causes mischief while there. Based on the research so far, scientists and healthcare professionals have been cautious not to make any conclusive proclamations about a causal link between air pollution and Alzheimer’s. But the studies, while yet to be definitive, do provide an emerging picture of particulate pollution as a plausible risk factor in the development of Alzheimer’s. The EU precautionary principle mandates: action should be taken to mitigate plausible risks until they are proven not to be risks at all. By sticking to it, the UK Government could ease the parallel air quality and social care crises, for which they’re responsible. Urgent and bold action on air pollution will, at best, help prevent thousands from developing Alzheimer’s disease while reducing both the unnecessary premature deaths of 40,000 Britons and the associated public health bill. At worst, it will just help prevent tens of thousands of unnecessary deaths and save the British taxpayer almost £30bn a year. It’s a win-win situation. It begs the question then: why is the Government still displaying such a shocking disregard for the UK’s legal and moral obligation to take action on air pollution?
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healthcare
Joint agenda against Alzheimer’s
Maureen WATT msp Scottish Minister for Mental Health
The Scottish model of post-diagnostic support Scotland’s national dementia strategy continues to focus on diagnosis, post-diagnostic support and care co-ordination in the community, whilst looking at support for people with advanced dementia. Maureen Watt MSP, Scottish Minister for Mential Health, details the Scottish action plan
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he Scottish Government has maintained a focus on dementia since 2007. We have had two national strategies so far, and in June we published the third Scottish Dementia Strategy, for 20172020. There has been significant progress in many aspects of dementia care in that time, including improved diagnosis rates and data, the introduction of the human-rights based Standards of Care for Dementia in Scotland; a national dementia workforce training and education framework, Promoting Excellence, and an improvement programme led by the Focus on Dementia Team at Healthcare Improvement Scotland. During the last three years we have focused on making sure that people with dementia get the care, treatment and support they are entitled to in all care settings, at all ages and at all stages of their illness.
they can take as active a part as possible, and have as much control and choice as they want in the process. To make that happen, we want to make more progress in getting more people diagnosed earlier.
During the next phase of our national work and the third dementia strategy we will build on the progress which has already been made in transforming services and outcomes for people with dementia and their carers. We will continue our focus on diagnosis and post-diagnostic support. The optimum model of post-diagnostic support is one where the person with dementia is diagnosed early enough that
For that reason, we are testing the re-location of post-diagnostic services into modern primary care settings, with the aim that this will make post-diagnostic dementia services more accessible, thereby encouraging more people to come forward earlier for a dementia diagnosis or for a memory assessment, in a setting where the appropriate post-diagnostic support services are on hand to respond to the
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individual’s needs. Our national priorities on dementia are informed by continuing to listen to people with dementia, their family carers and the professionals working with them. Their stories have helped us to clearly identify our key priorities on post diagnostic support, integrated home care and palliative and end of life care. We legislated to integrate health and social care in 2014. Integrated home care is essential in order to enable people with more advanced symptoms of dementia to live, not only safely, but with a good quality of life in their own home
for as long as possible – and with families and carers who feel supported in their key caring role. Our approach to integration is focused on personcentred planning and delivery, bringing together services and professionals to ensure that an integrated, holistic, person-centred experience will improve the whole system, the whole pathway of care, and the wellbeing of the whole person, along with initiatives to make Scotland a more dementia friendly country. Improving the care of people with dementia in general hospitals and in specialist NHS dementia settings also remains
a key part of national dementia policy. We will also have a significantly enhanced focus on palliative and end of life care for people with dementia, with the overall aim that by 2021 everyone with dementia has access to highquality palliative and end of life care, based on the principles of early planning and services working holistically with people with dementia and their loved ones, to reflect their wishes in the care provided. More than 500 people took part in a series of National Dementia Dialogue Engagement Events between 2015 and 2016, to help inform the development of this new strategy. We have worked with experts from a range of organisations including Alzheimer Scotland, the Convention of Scottish Local Authorities ( CoSLA), Healthcare Improvement Scotland, the Alliance, Scottish Care, the Scottish Social Services Council, NHS Education for Scotland, the Care Inspectorate, Integrated Joint Boards, academics and people with dementia and their carers to develop the new dementia strategy to ensure that people get the right care, in the right place, at the right time. We are now also coordinating the second European Joint Action on Dementia- the key areas of focus for the Joint Action are diagnosis and postdiagnostic support, crisis and care co-ordination, residential care and dementia-friendly communities, so there are clear areas of common interest between the development of dementia policy in Scotland and the wider picture in Europe. At the end of last year, the Scottish Government also presented to the Council of Europe Presidency Event and the European Expert Advisory Group on Dementia in Bratislava. We are exploring further opportunities to address other such gatherings of experts as the joint action continues its progress with the aim of promoting the implementation in Member States of coordinated actions to improve the situation of people living with dementia and their carers
parliament perspective
Nessa CHILDERS mep Member of the European Parliament
Assessing the current state of care in Europe
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new report from Alzheimer Europe highlights the existing inequalities in access to dementia care and treatment across Europe. The report the “European Dementia Monitor” assesses which countries provide the most dementia-friendly policies and guarantee the best support and treatment of people with dementia and their carers.
In 2030 it is predicted there will be 13.42 million people in Europe living with dementia. (2) The cost per person with dementia was about EUR 22,000 per year, while it was somewhat lower for the wider EU sphere and for the whole of Europe. The total societal costs per case were estimated to be 8 times more in Northern Europe than in Eastern Europe.(3)
Twenty years ago there was little recognition that Dementia constituted a public health challenge. Dementia is a major cause of disability and dependency among older people worldwide, having a significant impact not only on individuals but also carers, families, communities and societies.
For the reasons above Alzheimer Europe surveyed its national associations on the current
Dementia is known to be more prevalent in an ageing population and by 2060 28% of the population will be aged over 65 and 12% aged over 80. (1) As Europe’s population ages there will be an increase in age related diseases and one of the most prevalent of these is dementia.
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Finland scored highest on care availability and affordability since it provided the most care services and ensured that these services were accessible to all.
state of care treatment research policies and law in the field of Alzheimer’s disease in order to identify differences between countries as well as common trends and potential good practices and existing trends. The new report provides a benchmark of national dementia policies which compares and rates the responses of European countries to the dementia challenge. The survey covered all Member States of the European Union (with the exception of Estonia), plus Albania, Bosnia & Herzegovina, Jersey, Israel, Monaco, Norway, Switzerland and Turkey. The European Dementia Monitor compares countries on 10 different categories including availability of care services, affordability of care services, reimbursement of medicine, availability of clinical trials, involvement of the country in European dementia research initiatives, recognition of dementia as a priority, development of dementiafriendly initiatives, recognition of legal rights, ratification of International and European human rights treaties, care and employment rights. According to the findings of the European Dementia Monitor, no country excelled in all ten categories and there were significant differences between European countries. Key findings include: • Finland scored highest on care availability and affordability since it provided the most care services and ensured that these services were accessible and affordable for people with dementia and their carers Government Gazette | 35
healthcare
Plan to reverse the cognitive decline
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Francesca COLOMBO
Head of OECD’s Health Division
• On treatment, Belgium, Ireland, Sweden and the United Kingdom (both England and Scotland) came first, as all anti-dementia treatments were fully reimbursed and the countries had a policy in place to limit the inappropriate use of antipsychotics. • Germany, France and Spain scored highest in the clinical trial category, as it was possible for people with dementia to take part in all nine phase III clinical trials currently being conducted in Europe. • Italy was the country that was the most committed to and active in European dementia research collaborations. • Ireland and Norway came first in the recognition of dementia as a national policy and research priority. • Finland, the Netherlands and the United Kingdom (England) had the most inclusive and dementia-friendly initiatives and communities. • Germany, France, Israel, the Netherlands, Slovenia and the United Kingdom (England and Scotland) complied with Alzheimer Europe’s four recommendations with regard to respecting the legal rights of people with dementia and their carers. • Finland and Norway had ratified the most International and European human rights conventions. • Ireland came first with regard to the care and employment rights which are recognised. On the basis of the findings www.governmentgazette.eu | 36
in the 10 identified categories, Alzheimer Europe established a ranking of countries (with each domain contributing 10% to the overall score) with Finland coming first with an overall score of 75.2% followed by the United Kingdom (England) (72.4%), the Netherlands (71.2%), Germany (69.4%) and the United Kingdom (Scotland) (68.8%). There is still a clear East/West divide in Europe with most of the Western and Northern European countries scoring significantly higher than Eastern European countries. As a rule, countries with national dementia strategies scored better in all categories. It is time therefore that all European countries and in particular those in Eastern Europe recognise dementia as a national priority and develop national dementia strategies References: 1. The 2015 Ageing Report, Underlying Assumptions and Projection Methodologies, European Commission, DG Economic and Financial Affairs, European Economy 8|2014 2. http://www.alz.co.uk/ sites/default/files/pdfs/ world-alzheimer-report-2015executive-summary-english.pdf 3. Wimo A et al. Regional/ National cost of illness estimates. Available at http:// www.alzheimer-europe.org/ Our-Research/EuropeanCollaboration-on-Dementia/ Cost-of-dementia/RegionalNational-cost-of-illnessestimates Last accessed 20 March 2014
Facing up to dementia requires doing things differently
Dementia imposes a tremendous burden on individuals, families, communities, and societies. It currently affects more than 47 million people worldwide, and this figure is expected to rise to 75.6 million by 2030. Francesca Colombo, Head of OECD’s Health Division and Elina Suzuki, Health Policy Analyst at OECD note that better dementia care and a future cure require urgent action today
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lder people fear Alzheimer’s and other dementias more than cancer. The numbers justify their concerns. A new case of dementia develops nearly every three seconds. Some 47 million people were living with dementia in 2015, including over 17 million in OECD countries. The prevalence of dementia is strongly linked with age: just over 1% of people aged 60-64 in the OECD area are affected, but this shoots to more than 40% for those over 90 (Figure 1). With the number of people over 80 years old set to at least double by 2050 across OECD countries, the number of individuals living with dementia will also more than double in the OECD, and more than triple in low-income countries. More than 131 million people across the world are expected to be living with dementia by then. Billions of dollars have been spent on research, but a cure has yet to be
found. Between 2002 and 2012, almost the totality of drugs for Alzheimer’s disease (which represents 60-80 per cent of dementia cases) assessed in clinical trials in the United States failed. Recent late-stage clinical trial failures, such as Eli Lilly’s solanezumab and Merck’s verubecestat, reflect the uphill battle researchers face in finding a cure or even symptommodifying treatment for a complex disease that is believed to develop decades before symptoms emerge. Efforts must continue to give signals to the pharmaceutical industry that we want them to continue efforts in this direction despite the setbacks, including through publicprivate risk sharing mechanisms, the application of real world evidence, and modernisation of governance and regulatory science systems. But without the prospect of breakthrough treatments in the near future, governments must ensure that people living with
dementia receive high-quality care that enables them to live with dignity and autonomy. Dementia places an enormous strain on people who develop the disease, but also their family and carers. Across 21 OECD countries, more than one in eight people aged 50 or above are informal carers, many for people with Alzheimer’s disease and many are themselves elderly. Caregivers are often overwhelmed by the burden of caring for a loved one. Highintensity carers are more likely to be poor, to give up their job and to experience mental health troubles. Social and health systems in place to support people with dementia and their families are under increased pressure, too. The need to respond to higher demand for services and to deliver high-quality care comes at a time when government budgets are strained. Health and social care spending growth today remains below pre-crisis rates. In contrast to the years leading up to the economic crisis, when growth in health spending strongly outpaced that in the rest of the economy, it has tended to follow economic growth more closely since 2013. Facing up to this challenge requires doing things differently. A clear priority is to raise quality standards, beginning with diagnosis. In too many countries, more than half of those with dementia are undiagnosed, preventing timely access to needed health and social care services.
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Without breakthrouh treatments, governments must ensure that people living with dementia receive highquality care that enables them to live with dignity and autonomy.
Awareness of the disease often remains insufficient, even among healthcare professionals, and post-diagnostic support is often ad-hoc or unavailable. Making matters worse, health and social care systems often operate in silos, unnecessarily complicating access to care for people with dementia. Encouraging ageing in the community for as long as possible is key. A number of countries – including the United Kingdom and Japan – have in recent years launched dementiafriendly initiatives that make it easier for people with dementia and their carers to participate in their communities. More can be done to develop support
services, including Alzheimer’s cafes, workplace protection, respite care, and training and counselling services. Policies can help carers reconcile their job with caring duties through more choice and flexibility about care leave and working hours, for example. People with dementia still end up in institutions too often, and efforts to eliminate inappropriate care must continue. Across OECD countries, one in every ten people aged 85 and over is treated with antipsychotic medications – often to control difficult behaviour resulting from dementia – even though behavioural and psychological symptoms of dementia can often be addressed with nonpharmacological interventions. The quality of care in hospitals can be improved, too, avoiding people with dementia leaving the hospital doing more poorly than when they arrived. In recent years, dementia has been placed higher on the political agenda as governments across the world recognise the scale of the challenge. The first G8 summit on dementia, hosted by then Prime Minister Cameron in 2013, created international momentum. This May, the World Health Assembly endorsed the Global Action Plan on the Public Health Response to Dementia. The OECD supported the first WHO Ministerial Conference on Global Action Against Dementia in 2015 and is furthering work with countries to improve benchmarking of dementia care and outcomes. The OECD also provides advice to the World Dementia Council and has partnered with the Swiss government, Alzheimer’s Disease International and the Global CEO Initiative on Alzheimer’s Disease to drive innovation in Alzheimer’s disease. These developments are an encouraging sign that countries are stepping up to the challenge. They raise hopes for successfully transforming how dementia is viewed and addressed in the future
deals blow to US drugmaker Eli Lilly. Financial Times. https:// www.ft.com/content/972f829cb171-11e6-a37c-f4a01f1b0fa1. 2. Cummings, J.L., Morstorf, T., & Zhong, K. (2014). Alzheimer’s disease drugdevelopment pipeline: few candidates, frequent failures. Alzheimer’s Research & Therapy, 6:37. 3. Hawkes, N. (2017). Merck ends trial of potential Alzheimer’s drug verubecestat. BMJ, 356:j845. 4. OECD (2011), Help Wanted – Providing and Paying for Long Term Care. OECD Health Policy Studies, OECD Publishing, Paris, http://dx.doi. org/10.1787/9789264097759en 5. OECD (2014). A Good Life in Old Age. OECD Health Policy Studies, OECD Publishing, Paris, http://dx.doi. org/10.1787/9789264194564en 6. OECD (2015). Addressing Dementia: The OECD Response. OECD Health Policy Studies, OECD Publishing, Paris. http://dx.doi. org/10.1787/9789264231726en 7. Prince, M. et al. (2016). World Alzheimer Report 2016: Improving Healthcare for People Living with Dementia, Alzheimer’s Disease International. 8. The Telegraph (4 August 2014). Older people are more scared of dementia than cancer, poll finds. http://www. telegraph.co.uk/news/health/ elder/11008905/Older-peopleare-more-scared-of-dementiathan-cancer-poll-finds.html 9. World Health Organization (29 May 2017). Seventieth World Health Assembly update, 29 May 2017 [press release]. http://www.who.int/ mediacentre/news/releases/2017/ dementia-immunizationrefuguees/en/.
References: 1. Crow, D. (23 November 2016). Alzheimer’s drug failure Government Gazette | 37
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healthcare
Plan to reverse the cognitive decline
Kathleen D’HONDT Policy Advisor, Dept of Economy, Science and Innovation, Flemish Government
Solving the dementia challenge
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he Alzheimer’s Europe Roundtable organised by the International Centre for Parliamentary Studies to prepare for a renewed engagement to deal with Alzheimer’s disease and move from care to cure, has helped reflect on the best way forward. The enormous burden imposed by dementia on the society as a whole and at personal level, has been increasing over the years. The burden, especially at the emotional level, for the closest relatives and caregivers is even huge. Annual, national and international dementia awareness days or actions and the special focus on neurodegenerative diseases by several countries across Europe have raised the level of awareness about dementia. The Alzheimer Paris declaration of 2006 stays largely valid, but the focus should be expanded to include other dementias. Several issues related to dementias are indeed generic. Further, diagnosis should enable us to clearly differentiate between the different dementias, especially as early detection is crucial for successful interventions in delaying the onset of the diseases. Since the Paris declaration, a lot of actions have been developed across the EU. National and regional dementia roadmaps or strategies have been developed to provide better care and supporting actions for patients, their families and care givers. It remains, however, hard to get an overview of the different national programmes and strategies and best care practices from other countries and regions. www.governmentgazette.eu | 38
One of the fundamental shortcomings in some national and regional strategies is that they are often non-committal. In addition, the integration of different policy domains, such as public health, wellbeing, research, innovation, regulatory issues and education may be enhanced. Too often, the different policy domains function independently, thereby leading to fragmented efforts. The different kinds of dementias pose multifaceted challenges, which require niche solutions. Patient organisations should play an important role in policymaking. First of all, there is a need to get an overview of the different national and regional organisations and how they may be interlinked with European or international organisations. In some countries there are a few competing NGOs focussing on Alzheimer’s disease, Parkinson’s disease or dementia in general. Some of these organisations focus on providing information and care while others aim to support research as well. Most of them organise annual fund raising programmes to finance their activities and/or provide budgets for research. Instead of spending these funds to support national or regional research, joining the different funds could create a very significant patients’ fund for strategic research purposes. Patient organisations funding collaborative research could induce a more significant impact of an initiative like the Joint Programming Initiative on Neurodegenerative Diseases (JPND). JPND is mobilising significant national research budgets and has an impressive scientific board that identified
the research priorities in neurodegenerative diseases. However, the JPND research budget is composed of budgets made available from national and regional research funding organisations, which want their contribution to support participation of their national or regional stakeholders. Although this approach has proven successful so far, the fragmented budgets fail to enable big projects. Finally, a renewed European engagement to address neurodegenerative diseases should emphasise more strongly on the regulatory and ethical issues related to early diagnosis. There are indications that treatment started in a presymptomatic stage of Alzheimer’s disease is crucial to delay the disease. However, developments in early diagnosis open a new discussion on how health and disease are defined and when
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A renewed European engagement to address neodegenerative diseases should emphasise more strongly on the regulatory and ethical issues related to early diagnosis.
to start treatment as part of preventive medicine. It may be difficult to get preventive treatments reimbursed; especially as such treatments will need to be sustained over extended periods. However, not treating may be more expensive to society and raises serious ethical considerations. Regulatory and ethical issues should be addressed at the European level. Early diagnosis and stratification of the population is needed to prove that the onset of Alzheimer’s disease can be delayed by pre-symptomatic treatment. Without a validated treatment available, currently there is a hesitation to establish large population screenings as the presence of predictive biomarkers may lead to stigmatisation. Nevertheless, in many cases, people are willing to participate in screening programmes. In any case, there is a shift in the mindset. While the stigma of being diagnosed with Alzheimer’s disease led to feelings of embarrassment and isolation, support and patient-friendly environments are being installed at least in some communities. However, population screening will be essential to move from care to cure and a principle of the right to know and right not to know should be explicit, as should be the guarantees on confidentiality of the data. It is essential however that the statistics related to the presence of biomarkers and association of increased risk are well understood.
In this respect and to deal with several of the above issues, a European platform to provide patients and carers with scientific updates and information on the different types of neurodegenerative diseases is necessary and this should be made available in all European languages Such a platform will give an overview of the different national and regional roadmaps to address the challenges related to dementias. It could also be an instrument to exchange best practices and creative ideas to improve treatment and care of Alzheimer’s disease in Europe. Similarly, the different patient organisations should find a forum to share ideas across borders
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Joël JAOUEN
President, France Alzheimer
France Alzheimer’s strategy to fight the disease
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ith over 900,000 cases in France, the care of people suffering from Alzheimer’s disease or related disorders has become a major public health concern. Not just for today, but also for tomorrow. It is important to keep in mind that, 8 years from now, 1 in 4 French individuals aged 65 and older will be affected by one of these pathologies (Alzheimer’s disease, Dementia with Lewy Bodies, vascular dementia, frontotemporal dementia). France Alzheimer will be focusing on six major challenges in the near future: changing attitudes towards the disease, promoting early diagnosis, optimising care plans, supporting and advocating for caregivers, reducing the costs of the disease and advancing scientific research. As of today, Alzheimer’s disease and related disorders often suffer from a wrong or negative image. In order to change the way the public think, we encourage any measure promoting the social inclusion of the individuals affected by these diseases. We also wish to launch a wide communication campaign at a national scale in order to deconstruct the numerous and common stereotypes. To this end, one of France Alzheimer’s main missions is raising the public and the health professionals’ awareness about the necessity to initiate the diagnosis as soon as the first symptoms occur. Meanwhile, other measures must be taken to improve the access to diagnosis, the way the diagnosis is announced, as well
as the redirection of the patients towards the existing assistance and support structures. In order to offer a personalised care plan to each patient, our association encourages the authorities to develop training and specialised programs for the professionals. We also urge them to take into consideration the patients’ specific needs, depending on several factors such as age, the stage of the disease, personal history, social, family or emotional environment, etc. Since its creation, France Alzheimer has always fought for a greater acknowledgement of the caregivers’ rights. Because when one is touched by these diseases, their whole family needs help. Today, we specifically ask for some solutions for respite to be developed all over France. In the face of the costs of the disease, mostly borne by the families, France Alzheimer reaffirms the urgency of finding new ways to finance the loss of autonomy. It is urgent to reduce what is currently being paid by the patients and their families.
clinical research and human and social sciences. The financial means allocated to scientific research and its development still are too limited. France Alzheimer also calls for an easier access to therapeutic innovation, especially by promoting the patients’ participation in scientific research. It is high time we start considering the amounts spent to fight against Alzheimer’s disease (and related disorders), in France but also in Europe, as an investment in the future and not as a cost. In the absence of significant measures, financed by significant means, the amount of people affected by these diseases will keep growing, and so will the costs borne by us all. In order to stop this plague, the rallying of authorities, researchers, families, health professionals, associations in France and Europe, is essential
Lastly, the research has benefited from the surge of solidarity generated by the Alzheimer plan launched between 2008 and 2012. This impulsion enabled the French teams working in this field to publish more, and to integrate the French research in the European ecosystem (ALCOVE project, JPND program). The research in genetics and medical imaging widely benefited from this momentum. Today, we must continue and amplify our efforts in favour of Government Gazette | 39
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healthcare
Joint agenda against Alzheimer’s
Colin CAPPER Head of Research Development, Alzheimer’s Society
Addressing Alzheimer’s funding challenge
D
ementia is one of the biggest health challenges facing society today. There are currently more than 10 million people with dementia in Europe. This figure is set to rise by 28% by 2030 and by 78% by 2050. Despite still being dramatically underfunded in comparison to research for other health conditions, dementia research is receiving increasing global attention. Last year, Alzheimer’s Society and Alzheimer’s Research UK each invested £50 million in a new UK Dementia Research Institute, demonstrating their determination to find better treatments and a cure for dementia. In July, the US Alzheimer’s Association announced a $20 million investment in a study to reduce dementia risk. But with no new treatments in the past decade and an ever-growing number of people affected, better dementia care should be recognised as an immediate priority. People with dementia are the biggest users of social care, so investing money in ways to improve the quality of support they receive from the start of the care pathway can directly improve their quality of life. We know most people with dementia want to remain in their own home for as long as possible. Better post-diagnostic support and care at home can empower people to remain independent for longer, minimise unnecessary hospital admissions and help avoid early entry to care homes. Despite this, care research still comprises a minority of the dementia research landscape. www.governmentgazette.eu | 40
people in a particular area. The model presents high employee and patient satisfaction levels and seems to reduce the number of hours of care a person requires. The organisation’s flat management structure offers nurses a flexible working approach and keeps costs low, meaning the service is affordable. It estimates overhead costs at 8%, whereas the United Kingdom Homecare Association suggests homecare providers in the UK need up to 30% to cover overheads.
To tackle this challenge, Alzheimer’s Society is funding three care research Centres of Excellence with £2m each over the next five years. Focusing on ways to measure and improve quality of life, access to post-diagnostic support and homecare, the interventions developed by each of these programmes could have lifealtering implications for people. By working in collaboration with people affected by dementia, NHS trusts, care providers and primary care services, we are developing interventions that are evidenced, cost-effective and scalable. But not all improvements need to come from new research. We can take lessons in good practice from successful care models across the globe and replicate them in our own communities. The Buurtzorg model of social care, created in the Netherlands, has grown to now be replicated in the USA, Sweden and Japan. Buurtzorg
demonstrates an excellent model of person-centred care, where individualised care plans incorporate a person’s health needs as well as their care and personal needs. Self-governing teams of highly trained nurses take responsibility for the homecare of a large group of
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People with dementia are the biggest users of social care, so investing money in ways to improve the quality of support they receive from the start of the care pathway can directly improve their quality of life.
While these models of good practice demonstrate that good care is achievable and affordable, they are operating autonomously. Alzheimer’s Society is paving the way to developing a longer-term solution in the UK. However, the cruel paradox is that even with more evidence-based research demonstrating how to improve care and without changes to the current system, there will not be adequate funding to implement these learnings. Dementia is a global issue that requires a global solution. We need to communicate and cooperate to provide the best possible interventions for people with dementia. Countries around the world must unite against dementia, to create a future without this devastating condition Alzheimer’s Society is asking everyone around the world to Unite Against Dementia. To find out more or to make a donation, visit www.alzheimers. org.uk.
Viewpoint
Alzheimer’s disease and the search for new medicines
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ith a rapidly ageing population, Alzheimer’s disease (AD) is a growing public health concern worldwide. In Europe, an estimated 10.5 million people have dementia, and this number is expected to increase to 18.7 million in 2050. In approximately 60 to 80 percent of people with dementia AD is the underlying cause. AD is a progressive neurodegenerative disease characterised by a decline of memory, thinking, behaviour and the ability to perform everyday activities. Ultimately, these impairments lead to a loss of independence and an increasing need for support by others up to full-time care as the disease progresses, inevitably leading to death. AD is a continuum and progresses in stages with a long silent phase starting before its symptoms appear. In Europe, rates of diagnosis remain low, and when diagnosis occurs it is typically at a relatively late stage in the disease progression. In addition to the economic costs (direct and indirect), people with Alzheimer’s and families caring for someone with AD may experience increased stress and anxiety as well as stigma and fear of the disease as there is no cure. However, recent advances have provided new hope. Future Outlook In the last decade, despite some key clinical study failures, the AD community has made
significant advances in the scientific understanding of the disease, laying the basis for promising new medicines that may one day delay the progression of AD. Advances in biomarkers and neuroimaging have shown that the disease pathology begins well before the onset of the symptoms commonly associated with AD like memory loss. The plaques, made up of betaamyloid protein, and tangles of tau protein, accumulate in the brain over the course of 10 to 20 years. New biomarkers, such as CSF analysis and PET brain imaging can detect abnormal levels of amyloid and tau and support an earlier diagnosis of AD. Today, a number of potentially transformative AD treatments are on the horizon. These disease modifying treatments (DMTs) will not cure AD but have the potential to slow the progression of the disease. It is believed these potential treatments will be most effective in the “Mild Cognitive Impairment (MCI) due to AD” or “Mild AD” stages, when symptoms are not currently noticed or are dismissed as normal ageing. The eventual introduction of DMTs requires a paradigm shift in health policy that provides equal consideration of timely diagnosis and treatment as well as prevention and the longterm care for people with AD. By diagnosing AD earlier in the disease pathway, it may be possible to help preserve
brain function or delay the development of more advanced AD. Patients, carers and society would benefit from earlier intervention in a number of ways: it would improve the outlook of patients and carers whilst helping reduce the costs associated with informal care and long term institutional care. Policy will play a crucial role in making this happen. We recognise the societal impact, policy challenges, and health
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We are committed to working with all relevant stakeholders to prepare for a new era of treatment and to help support health systems to achieve the full benefit of scientific advances in Alzheimer’s disease.
system changes that a new medicine for AD may bring. We are committed to working with all relevant stakeholders to prepare for a new era of treatment and to help support health systems to achieve the full benefit of scientific advances in AD. Areas for collaboration could include: • Awareness and understanding of all stages of AD and the importance of timely intervention. • Horizon scanning of potential future DMTs in AD to help manage budgets and plan for services whilst engaging in an early dialogue as to how health systems may need to adapt to reap the full benefit of these potentially transformative therapies. • Promote research to increase the understanding of AD and support the development of improved diagnostics and new promising therapies. • Update national strategies for dementia and neurodegenerative diseases to take advantage of new health technologies that will enable earlier and more accurate diagnosis of AD and the appropriate use of new treatments Biogen/Eisai collaboration Biogen and Eisai are engaged in a co-development and co-promotion collaboration for two assets in development for the treatment of AD, elenbecestat, a Beta Amyloid Cleaving Enzyme (BACE) inhibitor in Phase 3 and BAN2401, a humanized IgG1 monoclonal antibody in a fullyenrolled Phase 2 study.