A unified approach is needed to address the UK’s biggest killer
Dementia is the UK’s biggest killer but people living with the condition constantly tell me that they struggle to get the right support. Now is the time for accountability and integration at national level, writes Professor Fiona Carragher
A disjointed system means people affected by dementia often face considerable obstacles when it comes to getting the right support at the right time.
One of the starkest consequences of this lack of a coordinated approach is our dementia diagnosis pathway, which is fragmented and beset with inequalities, resulting in a situation where one in three people with dementia in the UK don’t get a diagnosis.
A diagnosis gives people access to care and support, and potentially treatments or clinical trials, which is clearly better for the individual but can also reduce the colossal impact of dementia on the health and social care system.
The impact of dementia
Dementia affects around one million people in the UK and in 2024 cost the UK economy £42 billion. That is forecast to increase to £90 billion by 2040 if the status quo is maintained.
Consider that the majority of people drawing on social care have dementia and one in six hospital beds is occupied by someone with dementia. With prevalence of dementia set to rise to 1.4million people by 2040 maintaining the status quo is unsustainable.
Dementia has become a problem too big to ignore. But why have things reached this crisis point?
Dementia is not ‘owned’
Perhaps due to its impact upon the entire system dementia has never felt truly ‘owned’ by one singular entity.
Instead, responsibility for dementia is fragmented between old age psychiatry, neurology, life sciences and furthermore between local health and social care systems, the UK government, governments of the devolved nations and the NHS.
Such scattered ownership of dementia has led to a lack of co-ordination in strategy and a lack of awareness of the cost of inaction. The result is a system which simply doesn't work for people with dementia.
Integrated Care Systems (ICSs) in England present an opportunity to integrate action on dementia at a local level. In 2024 The Kings Fund examined the role of ICSs through the lens of dementia diagnosis.
They found that ICSs should view their progress on dementia as a litmus test by which to judge the very success of the ICS model. In other words – if the various bodies involved can work together to tackle dementia, we can say that ICSs work as a model. That’s because no other condition percolates through the health and social care system like dementia. What’s more, if they can work together on dementia, it will have a ripple effect throughout the entire local system.
Given the significant impact of dementia throughout health and social care, on the economy, society and individuals, leadership and accountability are needed at a national level to pull all the many pieces of the dementia puzzle together into one cohesive strategy and demonstrate that dementia is a priority.
The experience of cancer and stroke
We need only look at cancer and stroke to see how great strides forward were made in diagnosis and patient care because accountability lay at the top of UK government.
The appointment of Professor Sir Mike Richards 25 years ago as ‘cancer tsar’ created visibility and focus, which turned around cancer survival rates.
According to the National Stroke Strategy, in 2007 stroke cost the NHS £7 billion a year and outcomes for UK stroke patients compared poorly internationally.
The strategy drove a number of things which reduced mortality and greatly improved care, including the excellent FAST public awareness campaign which overhauled public awareness on symptoms of stroke.
A public awareness campaign focused on improving recognition of dementia symptoms and a system set up ready to give those people an early and accurate dementia diagnosis - supported by post-diagnostic care - would be game-changing.
In the case of both cancer and stroke the threads were pulled together into one unified strategy with responsibility at the very top of UK government.
The opportunity of dementia diagnosis
With the advent of new drugs which can slow down the progression of Alzheimer’s disease there is a renewed sense of hope in dementia.
No treatments are yet available on the NHS but two have been found safe and effective by the MHRA. With around 20 drugs for Alzheimer’s disease currently in late-stage clinical trials, it is likely more treatments will be submitted to regulators in the years ahead.
However, people won’t be able to access these game-changing treatments and currently available interventions, unless they have an early and accurate diagnosis.
The opportunity is there for the taking on dementia. It affects the entire system but because accountability and one focal point isn’t there at a national level, it affects how dementia is dealt with as an issue.
It also affects how dementia is perceived at a local level. While there are many local systems providing good dementia diagnosis and care, there are areas where only just over half of the dementia population is getting a diagnosis, leaving those without a diagnosis facing a future without support or even understanding which terminal illness they have.
As well as improving the diagnosis pathway, including preparedness for blood tests which could revolutionise dementia diagnosis, the scope must also extend to tackling inequity in access to post-diagnostic services, investment in research, improved data and mandatory dementia training for the adult social care workforce which could make a huge difference for a small outlay.
From social care to GPs, hospitals to community care and specialist care to voluntary support, dementia is there. This complexity and the weighty impact of dementia requires understanding of how these pieces fit together and national leadership to drive real change.
At Alzheimer’s Society we listen to, support and collaborate with people with dementia every day. Alongside this we have a pioneering research and innovation programme, and expertise in policy and evidence. We are willing to work with bodies at both a local and national level towards a vision for the future of dementia.
Dementia is expensive, it’s complex, and it is the most urgent issue facing our health and social care systems. Without action, both the NHS and social care will be overwhelmed and people will be left trying to navigate a disjointed and confusing dementia system.
Now is the time to prioritise dementia.
Contact us: change@alzheimers.org.uk
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