Dementia is a devastating disease, which one in three of us born today will develop in our lifetime. Sadly, it is only becoming more prevalent. Dementia is now the UK’s leading cause of death, accounting for more than 76,000 deaths in 2024, with figures rising year on year.
Despite this, it has long been neglected as a health condition, with late diagnosis, substandard treatment and insufficient support for families all common problems. According to research from University College London, it takes roughly three and a half years to receive a diagnosis after first symptoms, while a third of people with dementia in the UK are undiagnosed.
But why has dementia – a condition which cost the UK economy £42bn in 2024 – not been taken more seriously? Michelle Dyson, CEO of Alzheimer’s Society, says the misconception still exists that it is a normal part of ageing.
“Society has not recognised dementia as a condition,” she says. “Part of what we need to change is to get people to recognise that it is – it can be prevented, diagnosed and treated.”
Last year, the UK government announced a Modern Service Framework for Dementia and Frailty, to improve the quality of dementia care and treatment in England. The interim product is expected to be published this autumn.
The new framework is a “great opportunity to show ambition” and make transformative change, says Dyson. Its two ultimate aims should be to reduce deaths and, importantly, enable people with dementia to live better lives outside of care homes for longer, she says. This will require a two-pronged approach of prevention with earlier diagnosis and intervention, and needs to be backed by departments across UK government with urgency and the same level of ambition that has been seen for other conditions such as cancer.
Late diagnosis and misdiagnosis are perennial problems that can lead to worse outcomes for patients, explains Paresh Malhotra, professor of clinical neurology at Imperial College London. For example, many clinical trials, where patients can try life-changing new treatments, are only available to those in the early stages of dementia.
“[We need] earlier, specific diagnosis for everyone,” he says. “Everyone in the country deserves an MRI scan and blood tests that are specific when they present [with symptoms] rather than waiting several years for them to be referred back and forth.”
Linsey Farnsworth, Labour MP for Amber Valley, experienced misdiagnosis with her father, which led her to become an advocate for better dementia provision. He was initially misdiagnosed with depression and anxiety, then eventually Alzheimer’s. Several years later he received a CT brain scan and it was confirmed that he had frontotemporal dementia, meaning his treatment until that point may have been ineffective.
“Those drugs are costing the NHS money and probably weren’t really doing anything,” she says. “Specific diagnosis is something that I would like to see.”
The UK is falling behind in its ability to deliver world-leading treatments for dementia due to blockers in the approval process, explains Dyson. Two new “disease-modifying therapies” – donanemab and lecanemab – which slow down Alzheimer’s disease progression rather than just manage symptoms, were approved by the UK’s medicines regulator in April 2025. They are being used in private healthcare settings, but have not been recommended by the National Institute for Health and Care Excellence (NICE) for use in the NHS because NICE found their benefits “remain too small to justify the additional cost”.
Yet their full benefits will not be realised until they are used in clinics, says Malhotra. “As with all treatments, whether it’s stroke, cancer or dementia, these things are iterative,” he says. “The first ones tend to be controversial. They don’t work as well as the next generation, and they don’t work as well as the generation after that. As new treatments are developed, if you start using combinations of therapies… then you’re more likely to have success.”
There also needs to be a concerted effort to increase access to clinical trials, he says. Research environments are crucial for making breakthroughs, but often pioneering treatments can also be incorporated into participants’ clinical care. He believes all dementia patients should have the opportunity to be on a national or local research database so that trial teams can contact them.
Many patients are not made aware of trials, and organisations like Alzheimer’s Society are helping to change this. As well as hosting a “trial finder” on its website, it has invested £3m into a nationwide team of specialist dementia nurses who assess patients in clinics on their suitability for research.
Dementia patients are often discharged from specialist care (for example, neurologist or psychiatrist) back to their GP after diagnosis, resulting in sub-optimum treatment as well as a lack of support for families.
The new framework should seek to create a coherent dementia patient pathway, says Malhotra, where people get continuous care from specialists and information is shared between GPs, specialists, social care settings such as care homes and clinical research programmes.
New data shows only 55 per cent of care staff have received any dementia-specific training, but people living with dementia make up roughly 70 per cent of older-age residential care in England.
Farnsworth realised the value of specialist care first-hand when her father was hospitalised due to a gallbladder infection. He was placed in a general hospital ward and did not get out of bed for weeks. But when a dementia nurse took a shift on his ward, he encouraged him to stand up. “The difference was that he was trained and he knew how to interact and care for my dad beyond the clinical issue that he had,” she says.
In parliament, Farnsworth has backed Alzheimer’s Society’s call for dementia-specific training for the social care workforce. Dame Louise Casey is currently undertaking an independent commission on reforming adult social care, and is calling for the creation of a dementia tsar. Such a role could help to reduce death rates, says Dyson, as the creation of a cancer tsar did more than 20 years ago.
Better public health messaging – similar to how the government invested in “stop smoking” campaigns for cancer – could also raise awareness of the 14 lifestyle factors that increase dementia risk. Nearly half of dementia cases globally are preventable, with major contributors being mid-life hearing loss, loneliness, physical inactivity and high blood pressure.
Similarly, Malhotra believes we need to shift from thinking about treating dementia to addressing the diseases that cause it in the first place – doctors treat high cholesterol to prevent heart disease, and they should think about preventing dementia in the same way.
There also needs to be more support for families and unpaid carers, says Farnsworth. Many people feel left in the dark after a diagnosis due to the lack of information and being discharged back to primary care: “I think there needs to be a holistic approach from start to finish.”
Dyson believes a “bold and ambitious” Modern Service Framework is a once-in-a-lifetime opportunity to seize the opportunities presented by the research and catalyse systems to respond to the immense challenge of dementia.
With an ageing population, the dementia crisis isn’t going anywhere. It is time for the government to take it seriously and use its upcoming framework to change the trajectory.
Dementia Action Week runs from 18-24 May
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