''To Find A ''Cure'' For Dementia Care - We Must Be Ambitious''
In 2013, leaders of the G7 nations agreed the goal of finding a cure or disease-modifying therapy for dementia by 2025. This ambitious commitment has the hallmarks of a ‘moonshot’: being thought almost impossible to achieve and requiring a radical shake-up of the global research landscape in terms of funding, political intent, regulation and co-ordination.
Since then, we’ve seen all completed phase III trials of promising Alzheimer’s drugs fail, highlighting the scale of the tremendous challenge that lies ahead. Undeterred by the lack of a ‘quick win’, this bold ambition has been a catalyst for dementia research investment. A $100m global Dementia Discovery Fund was created, as well as a £250m UK Dementia Research Institute with a predominant focus on understanding the biological mechanisms of the disease. US dementia research funding has almost tripled in budget (from $504 million in 2013 to $1.4 billion in 2017) and significant EU funding has led to co-ordinated research programmes, often across six or more countries.
The global optimism towards finding a dementia cure is in stark contrast to the catastrophic state of dementia care. The global cost of dementia is estimated to top $1 trillion in 2018, and every day stories in the media highlight the human suffering of our broken social care system – yet less than 5% of all dementia research globally addresses the care and support of people living with the disease. In contrast to biomedical research, there is a limited sense of progress or breakthroughs being made in research into dementia care, non-drug therapies and prevention.
When we explore the moonshot cure ambition, we see why developing and investing in other research areas is going to be so important. A treatment that restores a pre-disease level of brain function for all 80 or so forms of dementia is sadly not realistic, at least not any time soon. By the time dementia is diagnosed, the brain will show extensive damage and can have lost up to 10% of its cell volume. A major focus of current research is identifying people with dementia before symptoms develop, in hopes of intervening and preventing the condition. But as this work progresses, millions of people are already living with dementia, and that number is set to rise rapidly with our ageing population.
Today, Alzheimer’s Society launches its new report ‘A research roadmap for prevention, diagnosis, intervention and care by 2025’ outlining how research ambitions for care and cure should sit side by side. We worked with a taskforce of researchers, policy-makers and people with dementia to develop five additional research goals that describe what care research can deliver for people living with dementia. The goals are supported by detailed recommendations and an implementation plan to improve future dementia care, intervention and prevention research.
- Goal 1 - Prevent future cases of dementia through increasing knowledge of risk and protective factors.
- Goal 2 - Maximise the benefits to people living with dementia and their families when seeking and receiving a diagnosis of dementia.
- Goal 3 - Improve quality of life for people affected by dementia, by promoting functional capabilities and independence, while preventing and treating negative consequences of dementia.
- Goal 4 - Enable the dementia workforce to improve practice and skills by increasing evidence to inform changes in practice and culture.
- Goal 5 - Optimise the quality and inclusivity of health and social care systems that support people affected by dementia.
On paper, these goals might not be viewed as ‘moonshots’, but they have the potential to change millions of lives worldwide – and, as with the search for a cure, achieving them will require major political and financial commitments and global co-ordination.
With our social care system in crisis, people living with dementia not only face the daily challenges of managing their progressive health condition, they are also battling with wholly inadequate support and burgeoning bills for the care they require. Increased funding and social care reform must be a priority for the coming years, and achieving these research goals will be a vital component. Research will show us what works in dementia care – to help people remain independent and reduce avoidable hospitalisation, to improve quality of life for the whole family, and to construct a cost-effective care pathway that can cope with the increasing numbers of people developing dementia.
We see growing recognition of the importance of a more holistic research agenda beyond finding a cure. In May 2017, the World Health Organisation endorsed a global action plan on the public health response to dementia and urged countries to implement national research agendas on prevention, diagnosis, treatment and care of people with dementia. The US will publish a dementia plan for support, services and care at the end of January 2018. In the UK and EU, new funding opportunities in 2018 totalling over £50m provide new stimulus for supporting dementia care research. Now our research roadmap provides a broad framework for guiding future investment and research questions that will have the most far-reaching impacts for people already living with dementia as well as future generations
Dementia care is not a stop-gap until we find a cure. This year we are starting to see some of the key components for an ambitious, radical effort to ‘cure’ the on-going issues in dementia care. Setting moonshot ambitions for prevention, diagnosis, intervention and care in dementia research will ensure that – regardless of whether we find the breakthrough treatment - great progress can be made to improve the lives of people with dementia by 2025.
Head of Research at Alzheimer's Society