Table of Contents

    Dementia is a debilitating condition for which there is currently no cure. As the condition progresses, those affected can be left dependent on others for support in their daily lives. The human and financial costs of dementia are of a worrying magnitude. Globally, it is the second largest cause of disability among those over the age of 70, with an estimated 44 million people living with dementia worldwide. In terms of financial burden, the global cost of dementia is well over half a trillion US dollars each year – roughly equal to the GDP of Switzerland. Nevertheless, health systems and social services are still failing to provide adequate support to people with dementia and their families. Given our ageing populations, these costs will only continue to escalate. Dementia is set to become 50% more common in high-income countries and 80% more common in low- and middle-income countries by 2030. It is high time that we provide a more effective policy response to dementia.

    The large and growing human and financial costs of dementia make policy action an urgent priority. Dementia is already the second largest cause of disability for the over-70s and costs societies more than half a trillion US dollars every year globally, while ageing populations mean these costs are rising. Despite the urgency of addressing dementia, current policies are failing to deliver much-needed progress in finding a cure, while communities, health systems and social services are struggling to meet the needs of people with dementia and their families and carers. This report argues that urgent policy action is required to accelerate innovation and rethink how countries support those living with dementia now and in the future.

    The large and growing human and financial cost of dementia provides an imperative for policy action. Dementia is a debilitating condition for which there is currently no cure. It is the second largest cause of disability for the over-70s and the global cost in 2010 was estimated to be USD 604 billion – more than the total economic output of Switzerland. Since dementia is strongly linked to age, its cost and burden will grow as people around the world live longer. By 2030, prevalence within the whole population is set to rise by 50% in high-income countries and 80% in low and middleincome countries. Governments and other organisations around the world need to act now to minimise the human and financial costs of dementia.

    The global cost of dementia – both in terms of the financial cost and the burden of disease – is large and rising. Since dementia is strongly associated with old age, increasing life expectancies across the world will mean more people living with the condition. As a result, dementia is the fastest growing major cause of disability globally, and the cost to society – already estimated at USD 645 billion – is set to rise further. This is why dementia has rightly become a key policy priority for countries across the world. In the long-term, policy must aim to find a cure and preventive treatment – but this will take some time to deliver results. In the meantime, millions of people are living with dementia and policy must focus on what can be done to improve their lives.

    The case for policy actionUntil a cure or preventive treatment for dementia is developed, policy must focus on improving the lives of people living with the condition and their families. This means keeping them as safe and healthy as possible, but also ensuring they live dignified lives, retain control and independence and maintain social relationships. All countries need to consider the key policy objectives identified in this chapter – covering all stages of dementia, from risk reduction and detection through to the end of life – and use the best available evidence to design appropriate policies. Some countries have published dementia strategies reflecting many of these priorities, but implementation remains a challenge. A better understanding of what works in improving the lives of people living with dementia is also needed. Countries should focus on evaluating their policies and sharing the results, and the development of an internationally comparable set of indicators around dementia should be explored.

    Finding a cure and a preventive treatment for Alzheimer’s disease and other dementias must be the long-term goal of global dementia research policy. This would transform the lives of millions of people by relieving them of the burden of disability and save the billions of dollars every year that dependency costs. But working towards an effective therapy requires that we rethink the systems and incentives that drive biomedical research and health innovation. Under our current model, progress in dementia research and drug development has stalled and investment is just a fraction of what it is for other diseases of similar importance and profile. Areas where progress should be made include: greater patient and public engagement in the innovation process; increased collaboration and stronger public-private partnerships; a more convergent and synchronised regulatory environment; flexible and adaptive clinical trial designs; greater use of open science and data; enhanced public research funding and increased risk sharing as well as respect for access to medicines and payers’ perspectives. While finding a cure is paramount, policy makers should also strengthen the focus on risk reduction and foster the development of better symptomatic treatments. Finally, better data on the public resources devoted to research and health innovation on dementia are required.

    The need to harness the large quantities of broad and deep data generated across laboratories worldwide, promote global collaboration and data sharing to accelerate research and development and the testing of new therapies and care models for Alzheimer’s and other dementias is today undisputed. The complexity of the dementia challenge and its heterogeneity requires moving beyond the traditional hypothesispredicated scientific approach to the simultaneous assessment of a multitude of factors within big data to discover the unexpected. Capitalising on big data will require, however, a strong effort at several levels. Big data for dementia is not just important for its size, but also for its scope that will go beyond the borders of the health system, requiring data sharing and collaboration among governments, researchers and industry, i.e. linking different communities together. Current research models are however, not well set up for this complexity. While big data networks are proliferating, and the volume and velocity of personal health and other data are rising, barriers still remain with respect to data sharing efforts. Some barriers are of a technical nature, as for issues related to interoperability and standards, storage, the technical infrastructure to allow data sharing. The most significant challenges are, however cultural, legal and ethical and are related to the lack of an open data culture or the disincentives that researchers and scientists face with respect to the disclosure of data. Public policy has a crucial role to play ensuring that framework conditions to promote data sharing are sound and supportive and in setting the conditions for trust and partnerships.