Why is dementia a big concern for healthcare officials and governments?
Dementia is the 21st century's greatest medical challenge. It affects over 50 million people worldwide and this number is expected to rise to almost 80 million by 2030, and cases will continue to rise exponentially. There is currently no cure for dementia, or treatments that can slow or halt the progression of the underlying diseases.
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There are around 10 million new cases of dementia each year, at an estimated cost to the global economy of a trillion dollars, and 26 billion pounds a year in the UK. Aside from the significant financial impact, the condition not only affects those with dementia, but their close friends and family.
Studies have shown that those closest to the individual experience great psychological impacts from caring for a loved one with the disease. We’ve made great progress in other disease areas like cardiovascular disease or cancer, but not dementia. It’s a travesty, and we need to acknowledge the fact that more needs to be done.
It’s also significant that the prevalence of dementia is growing most rapidly in low-middle income countries. A few years ago, dementia was seen as a high-income country issue, whereas now it is a global issue. As we’ve made advances in treatments for non-communicable diseases, life expectancies are higher, and as a result dementia is becoming more prevalent.
Five years ago, the UK government pledged to find a new treatment that could significantly halt or slow down dementia by 2025. Various governments and organizations across the globe have been helping to achieve this goal, but we are still lacking in momentum.
The problem is that we started from a very low base. In the UK, for example, it was around one in six cancer researchers to dementia researchers, and now we’re down to about one in four.
In the UK, across all age groups, and genders, dementia is now the leading cause of death, although the figures are skewed towards those in later life and older people. This spurred the WHO to develop the 2017 Global Action Plan for Dementia, particularly due to its prevalence in low income countries.
Please describe the WHO’s Global Action Plan for Dementia.
The WHO Global Action Plan focuses on the public health's response to dementia, and outlines ways in which governments can address the health and social aspects of the condition.
It asks questions such as; How can we create a society which is nurturing and supporting of people with dementia? And, how do our healthcare systems change and adapt to ensure that we're caring for and supporting people with dementia appropriately? Also, how can we all work towards progressing research so that we can develop not just new treatments, but new methods of care too?
What were the key actions identified in the WHO’s Global Action Plan?
The plan aimed to prompt low to middle income countries to develop a plan to address dementia. Seven priorities were established by the WHO, each including a set of high-level targets for countries to aim for.
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Dementia as a public health priority is the first one. Seventy-five percent of 194 member countries are expected to, or have already developed, a national plan or policy or strategy to tackle dementia by 2025.
The second priority is dementia awareness and friendliness. 100 percent of countries are expected to have least one functioning public awareness campaign focused on and fostering a dementia-inclusive society by 2025.
Dementia risk reduction is the third, which involves acknowledging that by making adjustments to our lifestyle we can reduce the risk of dementia. Research published in the
Lancet in 2016 showed that around 30 percent of cases of Alzheimer's disease could be prevented through lifestyle changes. The plans aim to raise awareness of risk reduction and recommend ways for people to potentially mitigate their risk.
The fourth priority focusses on the diagnosis, treatment, care, and support for patients with dementia. As it stands, 50 percent of countries will only be able to support 50 percent of people with dementia by 2025, as diagnosis rates vary considerably across the globe. Diagnosis needs to be greatly improved in low to middle income countries, as it is the foundation that helps create access to care, support, research and more.
The fifth is support for dementia carers. Seventy-five percent of countries must provide support and training programs for carers and families of people living with dementia. We need to reassess how we assist those providing care, as they experience anguish similar to that of the patients.
Information systems are the sixth; 50 percent of countries are routinely collecting a core set of data and key indicators that will help monitor the progress that they're making against their national plans, but which also allow us to see what progress is being made globally.
The seventh initiative is dementia research and innovation. The WHO would like to double the global research output on dementia by 2025.
What actions were taken by governments in response to the WHA’s Global Action Plan?
It’s only been a year since the action plan was set up, but so far just 27 WHO member states have proposed national plans for dementia and around 28, according to a recent report, are in development. This means we're still a long way from hitting the target of 146 countries.
Chili is the only country to have released a plan since the action plan was published and Canada has recently approved primary legislation to implement their plan. Whilst the reactions have been slow, the action plan has helped raise the issue of dementia, and flagged it as an issue that countries urgently need to address.
To reach the 75 percent target, we’re going to need 15 or 20 member states to develop a plan and put it into action every five years up to 2025, which is unlikely. Given the political priorities of some countries, such as many of those in Sub-Saharan Africa, it is unrealistic to expect them to fully implement such plans. Regardless, it will still raise awareness of the issue.
In a recent report by Alzheimer’s Disease International, it was clear that the world is not on track for meeting the 2025 target. Is 2025 a realistic target?
From a practical perspective, the 2025 target is unrealistic, but it is likely to set countries on the right path. We can aim to include dementia as a key component of broader health plans and health strategies in countries, but this needs to be included alongside meaningful targets around dementia and not just subsumed into a much broader, watered-down plan across multiple health issues.
One of the key challenges is receiving well-developed plans; less than half the adopted plans have received funding for affective implementation. There’s also no clear consensus on how funding will be provided, which is another barrier.
Whilst most plans focus on awareness, and training and support for carers, the research and data elements appear to be less of a priority. We will need to utilize the Global Dementia Observatory to conduct proper research and collect data, which requires significant research funding and is resource intensive.
Data is a big issue as well. Whilst we have a reasonable amount of data from high income countries, the quality of data across the globe is quite poor. This includes measures of the prevalence, incidence and diagnosis of dementia, which is partly due to the issues with diagnosis in some countries. More efforts need to be made to start capturing recorded health data in a more systematic manner.
What is the Global Dementia Observatory (GDO) and why was it set up?
The Global Dementia Observatory was set up for various reasons, but in terms of the action plan, the aim was to encourage countries to routinely collect core sets of data on dementia, and use those as indicators to illustrate the progress countries are making against the action plans they develop.
The collection and collation of data is challenging for a number of reasons, but mostly because dementia's quite difficult to diagnose in the early stages, so obtaining clear, high quality data sets, has historically been problematic.
The platform is really about compiling a set of key data from members, ideally on a national and potentially a regional level, and also using epidemiological data and statistics from research sources to combine a set of indicators at a national level for countries, but also globally through the Global Observatory.
It focuses on three domains. One is monitoring things like the action plan and other domestic policies that countries might have that focus on dementia specific activity. The second is service delivery; how is care and support and other services being delivered? How effectively are they being delivered to people with dementia?
Thirdly, collecting information about research projects happening in each member state, and sharing this data collectively. All three aim to support countries in measuring progress by being able to compare themselves with other countries around the world.
It's a resource to help people develop action plans or build on their existing plans. They can use the Dementia Observatory as their first call for key data, as well as key policies and research that will underpin the decisions they make.
There are currently about 21 countries, including the UK, who have entered data onto the GDO portal, but there is a desire for around 50 countries to have entered data by the end of 2018. I think we will see diagnosis rates for dementia improved as part of the Observatory work.
There’s a considerable way to go in terms of growing and developing a database, but it's certainly a good start. We need more countries to contribute, as well as a focus on developing and feeding better quality data through to the observatory.
What actions need to be taken in order to achieve the 2025 target?
We need to support the low to middle income countries develop plans, and assess how collaboration and mutual learning across countries can be fostered and supported.
There may be ways in which groups of countries can come together and do things collectively, or ways in which those that have already developed plans can educate other countries on how to develop plans. I think there's a role for international organizations like Alzheimer's Disease International for example, and the WHO, to help foster such collaborations.
In terms of areas that require more focus, risk reduction probably receive the least attention. I attribute this to the resource intensive nature of this area. There are now a number of established risk factors including; physical activity, obesity, poor diet, smoking, excessive use of alcohol, diabetes, hypertension in mid-life, all of which modify our risk factors.
We could be doing a lot more to promote and disseminate the information and message that by taking measures against these risk factors and lifestyle factors, we may reduce our risk of dementia. By communicating this message clearly, we can help people to perceive dementia as a condition caused by diseases, most commonly Alzheimer’s. Just like cancer or heart disease, those diseases are caused by a range of different factors, some modifiable, some genetic.
If you're thinking about these things in mid-life, then you begin to assess your risk moving forward and from a diagnosis perspective. You then begin to think,
"I want to know what's happening in my brain in my 50s and 60s, to see if I have any of the hallmarks and disease pathology in my brain, so then I start to understand more about my potential risk as I get older."
Once people grasp the concept that diseases like Alzheimer's can be prevented in the early stages of life, you start to remove some of the stigma and fatalism that exists around dementia. Then, you start to see a much better understanding and a more long term, coherent approach to tackling dementia and brain health.
We need to see big increases in investment and funding across the board as well. Only when we get that will we begin to see the infrastructure that will allow the rapid development of life changing treatments and improvements in health and care.
What is Alzheimer’s Research UK doing to help achieve the 2025 target?
Our vision is to see a world free from the fear, harm, and heartbreak of dementia. To that end, we are a biomedical research charity that focuses on funding research into four key areas. Doing more to understand the condition is a crucial one; we still don't understand enough about what's happening in the brain or the mechanisms of the different diseases that cause the different types of dementia.
We invest in research to help expand our understanding of the condition and also invest in diagnosis. This means improving the way in which we diagnose the diseases that cause dementia, particularly focusing generating new evidence that supports early diagnosis.
We focus on risk reduction, to develop and improve the research evidence around the modifiable risk factors and ways to reduce risk and, potentially, even prevent dementia advancing. We also do a lot to raise awareness of the ways in which people can potentially modify their risk of developing dementia.
We’re also focusing on ways to effectively treat the diseases that cause dementia. We want to see a future where a diagnosis of dementia unlocks a range of effective and tailored treatment options – treatments that not only improve the day-to-day symptoms, but tackle the underlying diseases.
One of the fundamental challenges to making big strides in dementia is to reduce the stigma surrounding the condition, and to present the disease in the same way that cancer and other diseases are perceived – as physical diseases that can be beaten through research.
In terms of specific initiatives to achieve the target, we, alongside the Medical Research Council and the Alzheimer’s Society have collectively invested 250 million pounds in the UK Dementia Research Institute. This is a UK based institute with its hub at UCL (University College London), with a number of centres around the UK.
It's focused on making the UK a world leader in dementia research, with a clear mission; to generate knowledge through discovery science that will ultimately help us to conquer dementia .
We recently invested 30 million pounds in three Drug Discovery Institutes, located in Oxford, Cambridge, and UCL in the UK. They're focused on performing early stage, high risk drug discovery that, historically, pharma had invested in. Pharma companies had largely stopped investing in these trials because of a series of high profile failures, and now it’s been 15 years since the last new dementia treatment.
To combat this, we've developed a number of partnerships with the pharmaceutical industry, who have seen the quality of the early stage drug discovery that we've been doing, and wanted to collaborate to support that. These partnerships have the potential to take some of these interesting ideas into the clinical development phase.
An example of this is the Dementia Consortium, which involves co-funding with pharma on high-risk early stage drug discovery work. We give them the option of working on any interesting projects in collaboration with us, or independently.
Finally, we’re also a founder and investor in the Dementia Discovery Fund, which is a £265m life science investment fund, set up as a collaboration between the UK government, Alzheimer's Research UK, and six pharmaceutical partners. It's subsequently taken on a number of other investors, not least 50 billion dollars committed by Bill Gates, as a personal investment, to grow the breadth of work that is happening.
Where can readers find more information?
About Dr. Matthew Norton
Dr Matthew Norton joined Alzheimer’s Research UK as Head of Policy and Public Affairs in 2013 and leads on policy development and stakeholder engagement.
He has a PhD in Social Policy and experience of supporting the design and running of bio-medical and clinical research for the National Institute for Health Research (NIHR).
Matthew has also worked as a Senior Policy Advisor at the Prime Minister’s Strategy Unit and prior to joining Alzheimer’s Research UK worked in policy and research for Age UK.