Alzheimer’s Research UK Backs Baroness Casey’s Call For Greater Focus by the Government on Dementia

Alzheimer’s Research UK has backed Baroness Casey’s calls for the Government to show leadership and prioritise dementia, including funding trials for treatments for dementia.

Welcoming Baroness Casey’s comments, Hilary Evans-Newton, Chief Executive of Alzheimer’s Research UK, said:
“Dementia is the UK’s leading cause of death—so why isn’t it a national priority? Every year we delay prioritising dementia costs lives and costs the UK billions.”

“Alzheimer’s Research UK has been calling on the Government to prepare for new treatments for the last decade, and despite new drugs licensed by the MHRA last year, our health systems remain woefully underprepared.”

Speaking at the Nuffield Trust’s Summit on 5 March, Baroness Casey described scaling up funding of investment in dementia trials as “small straight forward simple tasks”.

She said she would be watching to see what the Government did in response to this call to action, along with her other demands: the creation of a Dementia Tsar and implementing a Modern Services Framework for Dementia and Frailty.

With more than 130 Alzheimer’s drugs in clinical trials worldwide, it’s vital the NHS runs trials of new treatments now to understand how to deliver them in the future to eligible patients.

That’s why we’re calling for Government backing for the research initiative ACCESS-AD as a way to trial new treatments for Alzheimer’s approved last year but not available on the NHS.

Why we’re backing ACCESS-AD
ACCESS-AD is a Europe-wide study looking to ensure newly licensed treatments for early Alzheimer’s can be delivered to patients in clinics across the continent.

In the UK, ACCESS AD will help the NHS prepare for new treatments by:
• Piloting the real-world use of treatments that slow progression in Alzheimer’s.
• Testing how to deliver more accurate diagnosis and identification of people eligible for treatment.
• Exploring how new diagnostics, treatments and other interventions can be introduced sustainably into the NHS.

The trial will also be an opportunity for up to 100 people to be treated with the two licensed Alzheimer’s drugs lecanemab and donanemab, currently only available privately in the UK.

In her speech, Baroness Casey reflected on how the UK had always led in medical research. But when it came to dementia, the UK was too pessimistic about the future and that had to change.

We believe backing ACCESS-AD is a way to actively respond to that pessimism and show UK scientific leadership. Running such an important trial is likely to attract more investment in the life sciences and, in turn, support more clinical trials. Research is the only way we can understand more about dementia and we actively encourage people to join trials of new treatments.

There is an economic reason too, to backing ACCESS-AD: dementia is an expensive disease for the individual and their family and for the state.
Dementia cost the UK £42 billion in 2024; by 2040 if nothing changes, the cost will rise to £90 billion. Unpaid care given by the families and friends of people living with dementia accounts for half of these costs.

As dementia progresses, the costs associated increase, especially those associated with social care.

That’s why it is so important to trial treatments that have been shown to delay progression of early-stage Alzheimer’s and find out how we can extend the period where people are still able to live independent lives.

Baroness Casey called for the creation of the role of Dementia Tsar, someone with national responsibility for driving forward the prevention, treatment and care of dementia. We support this plan.

The Tsar should be accountable for fulfilling the Government’s manifesto commitment to put Britain at the forefront of transforming treatment for dementia. Currently, leadership for dementia at a national policy level is fragmented across different Government departments: health and social care, life sciences and the NHS. We support the creation of a role that would galvanise joined up action across national policy and the NHS.

This is a model that was successful in transforming outcomes for cancer over the last 20 years. Given the scale of the challenge in dementia and the opportunity for change, now is the time to explore a similar model to drive progress for people with dementia.