Patients ought to have the ability to entry breakthrough dementia medicine on the NHS, head of a significant social care evaluate says

Patients should be able to access drugs that delay the onset of dementia on the NHS, the head of a major review into social care has said.

Baroness Louise Casey said investment in dementia trials must also be urgently scaled up and suggested the disease is not given the necessary focus because it generally affects retired elderly people.

Giving an update on her work leading an independent commission on adult social care, she called on health secretary Wes Streeting to appoint a full-time dementia tsar who could champion the cause and secure improvements across government and the NHS.

Her comments come as the Daily Mail and Alzheimer’s Society have partnered in a drive to beat dementia, which claims 76,000 lives each year and is the UK’s biggest killer.

The Defeating Dementia campaign aims to raise awareness of the disease, in an effort to increase early diagnosis, boost research and improve care.

Dementia drugs Lecanemab and Donanemab have been shown to modify the underlying disease process – rather than just treating symptoms – and can slow cognitive decline by about six months over an 18 month period.

But the National Institute for Health and Care Excellence, the drugs watchdog, ruled they are too expensive for the benefits they offer and should not be prescribed on the NHS.

They are available privately for £60,000 to £80,000 a year.

Baroness Louise Casey said investment in dementia trials must be urgently scaled up and suggested the disease is not given the necessary focus because it generally affects retired elderly people

Everyone experiences dementia differently. Use this checklist to help you make a note of your symptoms before you talk to your GP.

Speaking at the Nuffield Trust Summit near Windsor today Baroness Casey said: ’If I was diagnosed with Alzheimer’s disease and told treatment would give me an extra six months to talk to my family and get my affairs in order before that disease took hold, I’m not sure I’d call that a small benefit.’

Previous polling by Ipsos for the Daily Mail revealed 69 per cent of the public want the latest dementia drugs to be made available on the NHS regardless of the cost.

Baroness Casey criticised an apparent lack of energy, drive and determination when it comes to dementia, in contrast to the approach to tackling cancer.

She said: ‘Is it because it’s the elderly? Is it just too much of a taboo subject for us to front it out? Is it because that me, when I hit 67, I’m supposedly no longer economically active, and therefore my voice doesn’t count? I think it’s for those reasons.

‘Instead, dementia is seen as inevitable part of ageing, rather than caused by a set of conditions and diseases.’

Overall, the peer called for a ‘moment of reckoning’ in a sector which is ‘anxiety laden’ for the vulnerable and their families.

She insisted there must be an ‘honest conversation with the public directly’ about what they want their NHS and Labour’s promised national care service to look like, including who should pay for care and where to draw the line.

And she branded some brief community care visits, lasting just 15 minutes, as ‘utter shite’, saying some families want their loved ones to stay in hospital rather than be discharged because they feel they might get better care.

Describing the current adult social care system as ‘creaking’, ‘inconsistent and often impenetrable’, she said it relies on the exploitation of an underpaid workforce.

The peer has previously headed a number of major reviews including into rough sleeping, culture and standards of behaviour in the Metropolitan Police and a national audit into grooming gangs.

Unlike NHS care, social care is not free at the point of use and high costs sometimes mean people are forced to sell their homes to pay for what they need.

Responding to Baroness Casey’s calls, Mr Streeting said he would establish a National Safeguarding Board to better protect vulnerable adults and accelerate work to transform dementia care and research, ‘including by creating a dementia leadership role to drive forward action’.

Michelle Dyson, chief executive of the Alzheimer’s Society, said: ‘The announcement today from Wes Streeting that he is accepting the recommendations from Baroness Casey to prioritise dementia is a pivotal moment and brings hope that dementia will at last receive the attention that is so desperately needed and much overdue.’

Baroness Casey’s independent commission was announced in early January 2025, and formally began a few months later in April.

It is expected that its second phase, making long-term recommendations for the sector, might not report until 2028.