Dementia, the UK’s biggest killer, puts massive pressure on our health and social care system – especially when it’s undiagnosed.
The King’s Fund argues that delivering improvements on dementia is a litmus test for the success of integrated care systems to address system-wide challenges. Getting dementia right and going further and faster on diagnosis could therefore be a massive enabler to achieving the Government’s three key shifts in healthcare and meeting its targets on 18-week waiting times, against which impressive progress has already been made. Ensuring this continues requires decisive action on dementia, which isn’t getting the attention it needs.
A third of people living with dementia in England don’t have a diagnosis. For those that do, people live with symptoms for an average of 3.5 years before getting diagnosed. Waiting times for dementia diagnosis are also steadily increasing, from 13 weeks in 2019 to 22 weeks by 2023, according to latest available figures. Some integrated care boards have told Alzheimer’s Society that improving dementia diagnosis rates in their areas will be less of a priority since it was removed from the 2025/26 NHSE operational planning guidance.
People with dementia need an early and accurate diagnosis. Often, this will have to be confirmed via an MRI, CT or PET scan, or a lumbar puncture. But scan waiting times are rising, too. There’s also huge variation in access to a diagnosis, with the number of patients at memory assessment services who have a scan varying from 0-90 per cent. The Government’s pledge to double the number of CT and MRI scanners could help address these challenges, but we need to see additional capacity specifically used to support this.
Although around one million people in the UK live with dementia, it’s never been prioritised as it should be. When we consider the burden that dementia represents for the system and the economy, it can be difficult to understand why.
In 2024, dementia cost the UK economy £42bn. Without action, this is set to rise to £90bn by 2040. People with dementia occupy one in every six hospital beds, make around one million A&E visits each year, and account for over 36 million contacts across primary, secondary, specialist and mental health care services annually. Earlier and better diagnosis could help reduce the enormous impact that dementia is having on the system. For example, evidence commissioned by Alzheimer’s Society shows a lack of diagnosis risks increasing healthcare use. Undiagnosed people are 1.5 times more likely to go to A&E than someone with mild, moderate or even severe dementia. The same research found that, on average, someone with severe dementia who has an unplanned admission stays in hospital for a month.
By focussing on getting more people a dementia diagnosis, we have huge potential to free up hospital beds and avoid emergency hospital admissions altogether. That means reduced pressure on the NHS, and a significant step towards moving care from hospitals to communities.
The Institute for Fiscal Studies has said that “the government will more likely than not miss this 18-week waiting time target.” To reach its goal, the UK government must ensure more people with dementia get a diagnosis, so they can access help and maintain independence for longer in the community, away from hospital settings. In contrast, failing to address the impacts of undiagnosed dementia, and dementia as a whole, will make it far harder for government to achieve its goals on healthcare.
As well as helping people access care, a diagnosis also means they can plan for the future. It provides the simple dignity of clarity for the people affected. Evidence shows the support unlocked by a diagnosis can keep people with dementia out of crisis, out of hospital and living in their own homes, freeing up beds. In turn, this will help with reducing waiting times across the NHS.
By prioritising dementia diagnosis, we are also helping to ready the healthcare system for new disease-modifying treatments. These can slow progression of Alzheimer’s disease, but they rely on early and accurate diagnosis.
At the World Dementia Council Summit 2025, Patrick Vallance, Minister for Science, Research and Innovation, spoke about the opportunity to align the 10-Year Health Plan with the Life Science Healthcare Goals. If the government wants to be a leader in dementia, and prioritise the condition relative to its impact, it’s key the system is ready for such breakthrough treatments.
The current target timeframe for a dementia diagnosis is six weeks from the point of referral, but this only happens for 10 per cent of patients at memory assessment services Meanwhile, just 1.4 per cent of all dementia healthcare spend currently goes on diagnosis and treatment.
The government’s efforts on elective care show what can be achieved when there is focus and drive on a specific issue. Chief Medical Officer for England, Chris Whitty, argues that early dementia diagnosis “helps to avoid unnecessary admission to a care home or hospital”, providing “substantial savings on long-term care costs.” By investing in diagnosis now, and ensuring new scanning capacity is utilised for dementia, we could see more people diagnosed early and accurately, which benefits both the person and the healthcare system at large.
In the future, blood tests could also be used for diagnosis on the NHS – Alzheimer’s Society is proud to be co-funding work to make that a reality sooner – but we need the government’s help to drive the action that’s needed. Right now, we have a target that two-thirds of people living with dementia in England should get a diagnosis. But with prevalence on the rise, that’s just not ambitious enough.
We need to see bolder targets, from ensuring all diagnoses include dementia type and happen early in disease progression as long as the patient chooses it, to empowering clinicians through better access to imaging and staff who are trained to read scans.
A situation where so many people don’t get a dementia diagnosis is not good for them or the NHS. Waiting times are falling, but to maintain and accelerate progress, there must be action on dementia too.
We can’t leave people with dementia waiting. It’s time to make dementia a priority. Doing so could be the missing piece of the puzzle that enables the Health Secretary to meet his targets.
This article first appeared in our Spotlight Healthcare: Parity of esteem supplement of 16 May 2025
Kieran Winterburn is Alzheimer’s Society’s head of national influencing
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