At a moment when political attention is consumed by uncertainty in Downing Street, it would be easy for long-term health reform to slip down the agenda. But for the millions of people across the UK living with or caring for a loved one with dementia, hitting pause is not an option.
The system’s shortcomings are not abstract. They are felt every day, in missed diagnoses, long waits and fragmented care. According to Alzheimer’s Research UK, fewer than a third of healthcare professionals believe current diagnostic pathways are fit for purpose. One in five people are still waiting more than two years for a diagnosis after first going to their GP for help.
I’ve seen how this plays out. When my grandmother developed dementia, we recognised the signs – confusion, repetition, frustration – but she never received a formal diagnosis. Like so many others, she was cared for at home with love and patience, but without the clarity, choices or support that a diagnosis brings.
But this is not just a diagnostic challenge, it is a system-wide one. Dementia sits at the intersection of ageing, workforce pressures and health inequalities, placing sustained strain across primary care, hospitals, community services and social care. The impact is already visible. People living with dementia occupy around a quarter of acute hospital beds and are more likely to experience longer stays, higher readmission rates and an increased risk of hospital-acquired complications.
Dementia currently costs the UK an estimated £42bn, a figure forecast to soar to an unsustainable £90bn by 2040. The economic costs of the condition also rise significantly as it progresses. The annual, per-person cost for mild dementia is £28,700, compared with £80,500 for severe dementia, driven by increasing need for more complex health, social and unpaid care. If we can diagnose dementia earlier, reducing the risk of people reaching crisis point and requiring emergency or more complex care, the total costs of dementia could be reduced.
And yet, for too long dementia has been treated as an inevitability to be managed, rather than a condition where earlier intervention can make a meaningful difference.
That mindset is out of step with reality. The development of new blood tests for diagnosing Alzheimer’s disease is a clear signal of progress. For the first time, we are moving closer to diagnosing the disease earlier, more cost-effectively and at scale.
It is not a cure, but it is a step-change in what is possible. The question is whether the system is ready.
Because innovation only transforms outcomes when it reaches the people who need it. Earlier diagnosis has the potential to change the trajectory of the disease, giving people clarity sooner, enabling access to support and opening the door to treatments and interventions at a stage when they are most effective. But none of this happens by default. It requires ministers to prioritise delivery over further consultation.
The government’s forthcoming Modern Service Framework for Dementia and Frailty is therefore a critical test. It cannot be another incremental plan that acknowledges the scale of the challenge without fundamentally shifting what is delivered in practice. It must set out a credible path to delivering earlier and more accurate diagnosis, backed by investment in diagnostic capacity, support for primary care, and a clear route for adopting innovations like blood-based biomarkers quickly and equitably. It must be ambitious, or it risks becoming irrelevant.
It should also confront the reality of variation in care. Where you live should not determine whether you receive a timely diagnosis or meaningful support. Yet this postcode lottery persists. In Stoke-on-Trent, for example, the diagnosis rate is more than 80 per cent, while in South Hams in Devon it is just over 40 per cent. An effective framework would not simply acknowledge this variation, it would establish measurable accountability for reducing it.
The political fallout from May’s local elections only heightens the urgency. Periods of uncertainty often result in the deferring of difficult decisions. But they should instead sharpen the focus on delivery and the real pressures and challenges that matter most to the voting public.
Dementia is one of the defining health and social care challenges of our time. One in three people born today will develop dementia in their lifetime. It is also one of the clearest tests of whether government can turn ambition into action.
The costs of inaction – human and economic – are already being felt and only going to worsen as our population ages. The UK has the scientific expertise, the clinical leadership, and increasingly the technological tools, to change the story
on dementia.
What has been missing is urgency and the willingness to recognise that the value of a diagnosis exists, even in the absence of therapies that can slow or stop disease progression.
The Modern Service Framework for Dementia and Frailty is a real opportunity to prioritise earlier diagnosis and bring long-overdue urgency to dementia care, much as has been done in other leading causes of death, including cancer. But it will only matter if it is bold enough to match the scale of the challenge, and grounded enough to deliver for the people living it every day.
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