Tag Archives: Alzheimers

“Time matters: A call to prioritize brain health” report launches

Experts call for coordinated public education and research programmes to avert a brain disease crisis

 

Experts are calling for a public health campaign aimed at promoting a ‘brain-healthy lifestyle’ to reduce the risk of developing neurodegenerative brain diseases, such as Alzheimer’s disease and Parkinson’s disease.

The campaign should support existing health promotion work by emphasising that “what is good for the heart is generally good for the brain,” they urge.

In a report published by the Oxford Health Policy Forum today, they go on to talk about a ‘window of opportunity’ in midlife where individuals may be able to make the biggest difference to their risk of developing neurodegenerative disease or of delaying its progress.

The public education campaign should be underpinned by a coordinated research programme, which is aimed at developing clinical tests for identifying those at risk of developing neurodegenerative diseases ‒ before signs and symptoms appear. Research to develop new treatments and other tests to facilitate earlier diagnosis must also continue, and health systems must prepare now for the time when such tests are available.

“People need to understand the risk factors that can affect their brain health and what can be done to maintain it and to help prevent neurodegenerative diseases,” said neurologist Professor Gavin Giovannoni from Queen Mary University of London and Co-chair of the author group of a new evidence-based report, Time matters: a call to prioritize brain health.

The report summarises published evidence and the consensus findings of an international multidisciplinary expert group, including clinicians, researchers and representatives from patient advocacy and professional groups.

“Deterioration in the structure or function of nerve cells (neurodegeneration) begins many years before any symptoms become obvious. This means that diagnosis often occurs at a relatively late stage in the disease course, when substantial damage to nerve cells has already taken place,” explained Dr Alastair Noyce, from Queen Mary University of London and Co-chair of the author group.

“We conclude that there is a ‘10–20-year window of opportunity’ in midlife during which people can reduce the risk of developing a neurodegenerative disease or delay its progress. We cannot change our genetic make-up, but we can help reduce the risk of developing neurodegenerative diseases ourselves by taking exercise, keeping socially active, eating healthily, reducing alcohol intake, stopping smoking and keeping our brains active.”

Neurodegenerative diseases are becoming more common as people live longer, but they are not an inevitable consequence of normal ageing. Worldwide, Alzheimer’s disease affects about 50 million people and Parkinson’s disease affects more than 6.1 million people; these numbers are rising.

“Planning for the healthcare structures of the future has to start now if we’re to avert a crisis,” stressed Professor Giovannoni. “Neurodegenerative diseases pose an enormous socioeconomic and individual burden, and this will continue to grow as the population ages.”

The report sets out a series of consensus recommendations, including:

  • improve public understanding of how to protect brain health through lifestyle measures – such as exercise and a healthy diet
  • prepare for the likely increased demand for genetic testing by those wanting to understand their risk of a neurodegenerative disease
  • provide access to available and effective treatments in a timely manner
  • provide accessible holistic care, including prevention information, treatment options and support
  • conduct research to identify accurate and cost-effective tests for disease detection and diagnosis
  • develop, validate and approve tests, tools and apps for monitoring brain health.

Several professional associations and advocacy groups – including European Brain Council, Alzheimer’s Research UK, Parkinson’s UK and European Parkinson’s Disease Association – have endorsed the recommendations

Welcoming the report, Dr Hilary Evans, Chief Executive of Alzheimer’s Research UK, said: “Evidence shows that what’s good for the heart is good for the brain, but this message is yet to hit home with the public. Only a third of people think it’s possible to reduce their risk of dementia, and we must do more to empower people with knowledge about the actions they could take to protect their brain health. Alzheimer’s Research UK wholeheartedly supports the timely and important recommendations of this report.”

Representing the European Brain Council, Professor Monica Di Luca echoed the need for action and collaboration: “The European Brain Council has for years been highlighting the importance and cost of brain diseases. This report strengthens the case for governments to prioritise brain health and to prepare for the challenges that healthcare systems will face as the burden of brain disease continues to increase.”

Time matters: a call to prioritize brain health was launched at the European Health Forum Gastein conference (the ‘Davos’ for Public Health) on Thursday 3 October.

Read the full report HERE.

 

Notes to editor

Lead author and Chair, Professor Gavin Giovannoni, and other members of the author group are available for interview.

Professor Gavin Giovannoni is centre lead for neuroscience and trauma at the Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London.

Professor Philip Scheltens, a leading expert in Alzheimer’s disease and Co-chair of the report, is based at the Alzheimer Center Amsterdam, Amsterdam University Medical Centers, Netherlands.

Author and Co-chair of the report, Dr Alastair Noyce, is a Clinical Senior Lecturer, at Queen Mary University of London and a Neurology Registrar at Barts. His main research interests are in the area of Parkinson’s disease.

Time matters: a call to prioritize brain is published by Oxford Health Policy Forum CIC, a not-for-profit community interest company registered in England and Wales (Registration number: 10475240).

A full copy of the report is available at www.oxfordhealthpolicyforum.org

Preparation of the report was funded by educational grants from Biogen and F. Hoffmann-La Roche, who had no influence on the content.

 

About neurodegenerative diseases

Neurodegeneration is a consequence of disease-related processes in the brain that result in a loss of function of the nervous system.1 Neurodegenerative diseases are long-term progressive conditions that cause a decline in brain health and result in premature age. Age is the strongest risk factor for neurodegenerative diseases,2 and these diseases are becoming more common as people are living longer.

The two most common neurodegenerative diseases are Alzheimer’s disease and Parkinson’s disease. Some, but not all, neurodegenerative diseases are causes of dementia. Dementia is the fifth highest cause of death and the number of global deaths is predicted to double over the next 20 years.3

The financial cost of neurodegenerative disease to society is considerable, both in terms of direct (e.g. medical) and indirect (e.g. sick leave) healthcare costs and in the significant loss of workforce hours. The global costs of dementia have increased from US$604 billion in 2010 to US$818 billion in 2015.3,4 The World Health Organization (WHO) has estimated that, by 2030, Alzheimer’s disease and other dementias will be responsible for 1.2% of the total deterioration in health-related quality of life.5

Alzheimer’s disease (AD) is the most common neurodegenerative disease and the most common cause of dementia.6 It involves the progressive loss of specialised cells in the brain (neurons) that affect behaviour, memory and cognition, which significantly and progressively impacts a person’s ability to maintain the activities of daily living.7,8 More than 520,000 people in the UK have dementia caused by AD; worldwide, AD affects about 50 million people.7,8

Parkinson’s disease (PD) is caused when brain cells stop producing ‘dopamine’, a chemical that controls movement.9 Symptoms can include an altered way of walking, a stooped posture, tremors and small handwriting.9 In the later stages it is characterised by balance problems which often result in falls. The number of people diagnosed with PD in the UK is around 145,000; worldwide, PD affects more than 6 million people.10

 

  1. Mattson MP, Magnus T. Ageing and neuronal vulnerability. Nat Rev Neurosci 2006;7:278–94.
  2. Livingston G, Sommerlad A, Orgeta V et al. Dementia prevention, intervention, and care. Lancet 2017;390:2673–734.
  3. Prince M, Wimo A, Guerchet M et al. World Alzheimer report 2015: the global impact of dementia, 2015. Available from: https://www.alz.co.uk/research/world-report-2015 (Accessed 15 January 2019).
  4. Wimo A, Guerchet M, Ali GC et al. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement 2017;13:1–7.
  5. World Health Organization. Neurological Disorders. Public health challenges Switzerland: WHO, 2006. Available from: https://www.who.int/mental_health/neurology/neurological_disorders_report_web.pdf (Accessed 15 January 2019).
  6. Cummings JL, Cole G. Alzheimer disease. JAMA 2002;287:2335–8.
  7. World Health Organization. Dementia fact sheet, 2017. Available from: http://www.who.int/en/news-room/fact-sheets/detail/dementia (Accessed 6 February 2019).
  8. Alzheimer’s Research UK. Dementia Attitudes Monitor – Wave 1 Report 2018, 2019. Available from: https://www.dementiastatistics.org/wp-content/uploads/2019/02/Dementia-Attitudes-Monitor-Wave-1-Report.pdf (Accessed 6 February 2019).
  9. Sveinbjornsdottir S. The clinical symptoms of Parkinson’s disease. J Neurochem 2016;139:318–24.
  10. Dorsey ER, Elbaz A, Nichols E et al. Global, regional, and national burden of Parkinson’s disease, 1990–2016: a systematic analysis for the global burden of disease study 2016. Lancet Neurol 2018;17:939–53.

 

Media relations

Chris Mahony, Interim Faculty Communications Executive (Medicine and Dentistry)

Marketing and Communications Department, Queen Mary University of London

T: 0207 8825315

E: c.mahony@qmul.ac.uk

EBC-endorsed “Alzheimer’s Policy toolkit for Members of the European Parliament” released

Alzheimer’s disease (AD) – the most common cause of dementia – is one of the most significant medical and societal challenges of our time. It does not discriminate and affects everyone, across all generations – from the people who develop the condition, to the families that care for them and the taxpayers who fund health services.

By providing facts and figures, polling findings and by highlighting what you can do on EU and national level to aid people with AD today across the EU, this toolkit is designed to help you promote change by driving the policy debate to benefit people with AD, their families, caregivers and society as a whole. In particular, you will find suggested steps that you can take to refresh the debate on EU level and, crucially, shape policy on national level – where change has so far been less forthcoming – to improve AD/dementia services and empower people with AD/dementia to live better lives.

Read the full report below:

MSD Policy Toolkit April 2019 WEB

Launch of “Driving policy to optimise care for people with Alzheimer’s Disease in Europe today and tomorrow” white paper

EBC endorses joint Alzheimer’s white paper setting out strategic vision on policy action to deliver better care for people with Alzheimer’s, their families and their carers in Europe

The white paper,  Driving policy to optimise care for people with Alzheimer’s disease in Europe today and tomorrow, launched today in the European Parliament, outlines clear priorities for change and proposes ideas for specific policy actions, which, if implemented, would significantly improve the care for people living with AD and the experience of their families and carers across Europe by supporting more patient-focused and sustainable care. The paper was developed collaborative by a number of stakeholders including EBC, European Federation for Neurological Associations and MSD.

Of today’s publication of the white paper, Frédéric Destrebecq, EBC Executive Director, says: The European Brain Council (EBC) endorses this white paper on Alzheimer’s Disease [AD] and its key areas for actions and policy recommendations. Alzheimer’s is one of the largest public health crises facing Europe; yet in the face of this growing challenge, and despite AD and dementia being high on the health policy agenda at EU level and across Member States, there are still concerns that the current level of action is not sufficient. EBC thus emphasizes the fact that it is now time to challenge the status quo and refresh the European policy debate on Alzheimer’s, come together to recognize the consequences of the burdens of AD in society and encourage multi-stakeholder-driven policy”.

The priorities for change and ideas for actions presented in the paper stem from the What if series of three policy roundtables hosted by leading MEPs in Alzheimer’s from September 2017 to October 2018. The roundtables were based on the following three keys areas for action:

Ethics: Overcoming the ethical challenges of early detection and diagnosis

Medical science and our understanding of AD and dementia are progressing. Evolving biomarker research in particular has increased the likelihood of identifying lesions of AD type even at the asymptomatic stage. As this asymptomatic stage has become a major focus of research, the ethics of early detection and diagnosis have been thrust into the spotlight.

The right to dignity: Overcoming the stigma, discrimination and inequalities faced by people with Alzheimer’s disease

AD is often a difficult diagnosis for the individuals affected and for their families. In addition to the uncertainty around how the disease might progress in the future, the lives of people with the condition and their carers are all too often marked by debilitating stigma, discrimination and inequality in access to care and treatment – all of which impact people’s fundamental human rights.

The “silver economy”: The socioeconomic impact of Alzheimer’s disease in Europe

The social and economic cost of AD has been well documented and currently amounts to some €251bn in Europe. Total costs in AD result from direct costs (e.g. money spent on diagnosis, follow-up or treatment) and indirect costs, which are harder to quantify and related to resources (ie. money and time) lost because of the disease. Costs increase as AD grows in severity.

Each area for action concludes with a set of policy recommendations endorsed by the collaborative parties of the paper to advance progress in a particular area and deliver a better today and tomorrow for people with Alzheimer’s, their families and their carers. A set of overall policy recommendations is also included in the pursuit of policy change across the key areas for action.

As we approach the 2019 EU elections, the white paper and its policy recommendations provide a valuable resource to inform the health policy agenda and policy action on national and EU level. In keeping with the paper’s stress on ensuring a better future for people with AD, their families and carers, the paper will be launched today,  Wednesday, 21 November meeting of the Brain, Mind and Pain MEP Interest Group – Future of Healthcare in Europe – What next for brain, mind & pain?

Read the full paper below:

Driving policy to optimise care WEB

Event Report: “The Socioeconomic impact of Alzheimer’s in Europe”

On the 25th of September, EBC held its latest event in the European Parliament, this time building on the Value of Treatment‘s work on Alzheimer’s and The Socioeconomic impact of Alzheimer’s in Europe. This event was an opportunity to further present the EBC Value of Treatment project, particularly the work and findings of the Alzheimer’s Disease working group.

The event was kindly hosted by MEPs Heinz K. Becker (EPP, AT) and Marian Harkin (ALDE, IE), both members of the European Alzheimer’s Alliance, moderated by Geoff Meade and chaired by EBC President, Prof. Monica Di Luca, and hosted an excellent line-up of expert speakers and roundtable participants, who each presented and led fruitful conversation around the future of Alzheimers research, patients and carers as well as the impact the disease has and will have on society.

Dr. Ron Handels and Prof. Philip Scheltens, members of the VoT Alzheimer’s Working Group, presented their work on the potential health-economic impact of treating Alzheimer’s and the patient journey for people living with Alzheimer’s. Mr Nis Peter Nissen then continued with a national insight, speaking on the cost of informal care of Alzheimer’s in Denmark.

The roundtable brought together key stakeholders in the Alzheimer’s and neurology communities, including leading academic and policy experts on the socioeconomic burden of Alzheimer’s from organisations such as the OECD and the European Commission.

The full agenda can be looked back on HERE.

The event also marked the conclusion of the “What if” series of policy roundtables, which launched in the European Parliament in September of last year with an event on the The Right to Dignity: Overcoming the stigma and inequalities faced by people with Alzheimer’s and a second meeting in January 2018 on Overcoming the ethical challenges of early detection and diagnosis.

The discussion and policy recommendations of last week’s and previous roundtables will now be captured in a White Paper on driving the policy agenda to optimise care for people with Alzheimer’s disease in Europe today and tomorrow. The White Paper, collaboratively developed and endorsed by MSD, EBC, EFNA and other stakeholders, will be launched at the meeting of EFNA’s Brain, Mind and Pain MEP Interest Group on 21 November 2018. As we enter campaigning season for the European Parliament 2019 elections, the White Paper will be a valuable tool to support advocacy activity focused on delivering better policy today and tomorrow for people with Alzheimer’s on EU and national level.

More can be read about the Value of Treatment, the Alzheimer’s findings (Posters / Report), and follow the launch of the white paper and all the latest EBC news and events here online and on Twitter.

©EPPGroup/Lahousse

 

 

 

EBC at 27th Alzheimer Europe Conference

EBC is in Berlin this week for the 27th Alzheimer Europe Conference, focusing this year on the theme “care today, cure tomorrow”. In partnership with MSD we are present at the exhibition and will hold a special symposium on the 4th October during lunch (beginning 12:45): Early intervention in Alzheimer’s disease: For a new understanding of AD across its spectrum.

Please visit our booth to learn more about the Value of Treatment case study on Alzheimers and pick up your brand new extended publication of the Alzheimers case study findings or download it HERE.

Alzheimer’s disease (AD) is a progressive disorder that spans over many years, in other words: the brain
starts deteriorating years before symptoms emerge. When are affected people becoming “patients” across
the spectrum of AD and what can we do about it? Between the early signs of being affected by AD and the
ability to provide treatment, many years will pass and many things could have been done. Amidst the call for
early intervention and putting knowledge and resources in the hands of patients and care givers, we are still
faced with a number of societal, ethical, technical and medical challenges. These are the premises of our
lunch session, where we would like to discuss the concept of “early intervention” across its many facets and
develop a new understanding of AD.

In this short session, experts and stakeholders will present the scientific rationale for this new understanding
of Alzheimer’s disease and the ethical challenges it holds; explore the opportunities to monitor and control
the risk factors through eHealth interventions; and to assess the potential socio-economic impact of treating
AD before the onset of dementia.

Speakers include:

Moderator: Donna Walsh (EFNA)
SS4.1. Nilsy Desaint (MSD): Would You Want to Know If You’ll Get Alzheimer’s?
SS4.2. Dr. Alex Milton (University of Southampton): eHealth interventions to prevent dementia
SS4.3 Dr. Ron Handels (University of Maastricht): The value of treating Alzheimer’s disease before the onset of dementia

Berlin_Alzheimer_oct2017_V5HD