By Lord Bethell
Anyone who has cared for someone they love through dementia will understand what Andy Burnham and his family have been through after the death of his father after years with Alzheimer’s disease.
Mr Burnham spoke movingly about the uncertainty about whether his father even knew his son had become leader of the UK. I remember by own father’s suffering every time I think of him, and extend my heartfelt sympathy to the Prime Minister and his family.
And he is right to say that the question of social care comes down to a choice. But the choice is not simply about how we fund the growing burden of social care. It is about whether we continue treating symptoms of today’s generation or invest in finding affordable treatments to slow or reverse the disease for tomorrow’s generation. Dementia is already the leading cause of death, with the numbers dying from the disease expected to rise. Its economic cost, estimated at around £42bn a year, is predicted to reach £90bn by 2040.
We are facing an ageing population and a declining birth rate. We need innovation.
But there is a danger in allowing dementia policy to become only a conservation about care. A country that is serious about dementia must build what makes new medicines affordable: early detection, cheap diagnostics, trial-ready patients and affordable treatments.
“We are a country that is developing and manufacturing medicines to tackle one of our great health challenges but have concluded that our own population should not have access to them on the NHS”
The science is moving rapidly. The latest research pipeline contains 158 treatments across 192 clinical trials, with the majority targeting the underlying disease rather than simply treating its symptoms.
Blood tests that can detect Alzheimer’s from a routine blood sample are recruiting from NHS memory clinics through the ADAPT and READ-OUT studies. Lecanemab and donanemab have shown that the progression of early Alzheimer’s can be slowed.
We were the first country in Europe to licence these drugs, but Nice subsequently concluded that neither represented sufficient value for money for the NHS in England and Wales. I regret that decision enormously, the depressing signal it gave dementia researchers, and I hope it will be reversed.
It seems extraordinary that Britain is investing in its capacity to supply lecanemab around the world, using British scientific and pharmaceutical expertise, yet British patients are being denied access to it through the NHS on contested evidence about cost and benefit.
We are a country that is developing and manufacturing medicines to tackle one of our great health challenges but have concluded that our own population should not have access to them on the NHS.
The NHS must make difficult choices about finite resources, but these choices have to be based on assumptions that properly reflect the human cost of the disease.
Dementia is devastating for carers
At the heart of the decision is Nice’s assessment of how much quality of life is lost as Alzheimer’s progresses. Its modelling places remarkably little value on the difference between mild cognitive impairment and severe dementia. Most strikingly, the methodology has estimated only around a 4 per cent reduction in quality of life between those stages. That is difficult to reconcile with the lived experience of dementia.
Severe dementia is not a slightly worse version of mild cognitive impairment. It can mean losing the ability to communicate, recognise family members, eat and drink independently, dress and wash or look after oneself.
The burden falls on those who care for them. Families may have to give up work, reduce their hours, spend their savings or provide round-the-clock supervision. They experience exhaustion, isolation and profound loss while the person they love is still alive.
To suggest that the difference in quality of life between mile and severe dementia amounts to only 4 per cent is therefore not merely a technical disagreement. It raises a fundamental question about whether the methodology is capturing what dementia actually does to patients and families.
If a model produces a result so far removed from the reality experienced by patients, families and professional carers, we should question whether it is fit for purpose.
Health economics matters. The NHS cannot provide every treatment at any price. But economic models are only as good as the assumptions underpinning them.
Clinical trials for lecanemab show it can slow cognitive and functional decline by about 27 per cent over 18 months. Donanemab has been shown to slow decline in memory and thinking by around 35 per cent compared with placebo.
The phase II Brainshuttle AD trial results for trontinemab, another potential new Alzheimer’s drug, showed rapid amyloid plaque clearance in up to 92 per cent of patients within 28 weeks.
This is where we should be focusing. Enabling access to these drugs and the future pipeline could help relieve pressures on social care and the NHS. But how will these innovations benefit UK patients if the body deciding what is available calculates the drop in quality of life so badly?
As a former life sciences minister, I know from personal experience that Britain has the ingredients to be a world leader in life sciences: outstanding universities, researchers, clinicians, pharmaceutical expertise and a strong life-sciences base. But I worry other countries are moving fast to overtake us.
The UK has fallen from second to sixth globally for new dementia clinical trials, while companies increasingly look elsewhere when diagnostic and recruitment pathways make studies difficult to deliver.
Every trial that moves abroad represents more than a missed scientific opportunity. It can mean investment, jobs, expertise and future treatments moving with it.
And the consequences are not merely economic. Britain risks becoming a country that discovers innovations but does not deliver them.
We need a national dementia research strategy, a coordinated trial-ready system and a plan for rapidly adopting proven diagnostics, blood tests and therapies into NHS practice.
The choice is stark. We can continue to ignore dementia and ask families to pick up the pieces or prepare now for a future in which earlier diagnosis, better treatments and disease modification become routine and available on the NHS.
The Prime Minister’s father’s generation needs care. His children’s generation needs the possibility of a cure.
Britain must plan for both.
Lord Bethell is a former minister for health and Chair of The BARBARA Alliance.