One in three people with dementia in the UK has never been diagnosed. Not because the disease is invisible, but because too many people believe there is nothing to be done about it. That fatalism is both understandable and wrong, and it is costing us dearly. Dementia Action Week, which runs this week, is Alzheimer’s Society’s annual challenge to these assumptions.
At CF, we have spent the past couple of years working with Alzheimer’s Society on some of the most detailed analysis of dementia prevalence and cost that has been produced in the UK. For the first time using patient-level data, we can show not just how many people live with dementia today and what that number will grow to by 2040, but how those people are distributed across the disease. Approximately 50% live with mild dementia, 33% with moderate, and around one 16% with severe dementia. That distribution matters enormously, because the costs ratchet sharply as the disease progresses: from around £28,000 per person per year for mild dementia, to £50,000 for moderate, to £79,000 for severe. The driver is not NHS care, it is the escalation of informal care and social care needs that families and communities absorb, often invisibly, as cognitive function declines.
The NHS absorbs a disproportionate share too. A significant proportion of occupied hospital bed days across England are driven by people with dementia, many of whom have no acute clinical need for that bed. We explored this in detail in our analysis of unmet care gaps.
The fatalism problem
The one-in-three undiagnosed rate is not an anomaly. It reflects a widely held view that dementia is an inevitable feature of ageing, and that diagnosis serves little purpose beyond confirming what is coming. This thinking is where cancer was forty years ago, before screening, before risk stratification, before the treatment revolution that followed.
The 2024 Lancet Commission on Dementia Prevention identified fourteen modifiable risk factors collectively accounting for around 45% of dementia cases. Several are well within reach of public health intervention: unmanaged hypertension in mid-life, hearing loss (among the most significant, and often untreated), physical inactivity, smoking, excessive alcohol, social isolation, and obesity. The evidence is clear. What is missing is adoption.
The research moment
We should be honest that disease-modifying treatments which materially slow or halt progression have not yet been established in routine clinical practice. But the pipeline is genuinely exciting. There are now hundreds of active clinical trials targeting dementia, pursuing not just therapeutic agents but also biomarkers: the biological signals that might one day allow diagnosis from a blood test rather than a PET CT scan or lumbar puncture. NICE is expected to complete its appraisal of donanemab, an anti-amyloid antibody therapy, in July this year. The outcome will shape what the NHS is able to offer and will signal whether the first chapter of disease modification has arrived.
Five things that need to happen
There is no single lever. Addressing dementia properly requires five things working in parallel.
Dementia Action Week asks one thing: that organisations treat dementia as the priority it is. That means prevention programmes that take modifiable risk seriously. It means diagnostic pathways that go beyond a ten-minute cognitive screen. It means care systems that plan for a growing severely affected population rather than reacting to it. And it means support structures for the families who are, right now, absorbing costs and pressures the formal system has not kept pace with. Our analysis with Alzheimer’s Society gives every ICB and commissioner in England a clearer picture of what is coming. The only remaining question is whether they will act on it before the curve overtakes them.
Read the original report here.
Click here to see all of our research about dementia.
About CF
CF is a leading consultancy dedicated to making an enduring impact on health and healthcare. We work with leaders and frontline teams to improve health, transform healthcare, drive adoption of innovation and create value through investment.
