Innovation in Dementia – what’s the cost?

But scientific innovation is only half the battle. The challenge now is ensuring that these treatments can reach the people who need them, which is where things become more complicated.

A moment in the spotlight

Dementia is increasingly receiving the political attention it needs – with Andy Burnham’s recent announcement of dementia research as a national priority, backed by a £48 million funding commitment. While a positive signal of intent, with the cost of taking a new medicine from discovery through to launch estimated to be around £1.6 billion, it won’t go particularly far.

At the same time, manufacturers have reportedly been locked in protracted negotiations with NICE – demonstrating the challenge of reconciling the promise of emerging ‘cutting-edge’ treatments with the existing health technology assessment framework.

Lord Cameron has led calls for a dedicated Dementia Drugs Fund, modelled on the Cancer Drugs Fund – to enable access where evidence on specific drugs is uncertain. While the principles behind such a model are welcome, it’s essentially a temporary solution to the system not being set up for certain emerging drugs – and also begs the question of what other disease areas should have a dedicated fund.

Debate on this issue raises questions often discussed about how we balance access to innovation with robust evidence, affordability and value for money. But it also lands on a bigger issue – with an ageing population meaning people are likely to live longer alongside a multitude of health conditions, where should we prioritise making progress?

What does innovation deliver?

There are various compelling arguments for a renewed push on dementia innovation. Among the most persuasive is that progress is rarely dependent on a single breakthrough moment. Meaningful change is often incremental: early advances can open the door for strengthened diagnostic pathways and system infrastructure needed to support the next stages of progress.

It also helps to maintain an environment in which research and development can flourish, attracting further investment to encourage the next generation of options.

Speaking at a panel event at the Labour Party Conference, it was encouraging to hear Zubir Ahmed MP, former Minister for Health Innovation, emphasise the responsibility of Government and partners to bring innovation to patients. This responsibility feels particularly acute in dementia, where even a modest delay in disease progression could make a meaningful difference to individuals, families and carers – with unpaid care costs rising from £9,700 annually for a person with mild dementia to £32,300 for severe dementia.

But what caveats come with this?

Voices have pointed to the fact that while there are benefits, new options come with ‘real side effects’ and complex delivery requirements. These medicines are also expensive – in the region of £1.5bn a year.

We can recognise the value of improving health but, at a time of significant fiscal pressure and limited resources, this will inevitably mean saying no to new treatments in competing areas of health.

This is of course why we have a process for assessing cost-effectiveness – looking at whether an intervention represents an appropriate use of NHS resources. But this framework also reflects a level of subjectivity, and adapts to external changes, including our preferences as a society.

That’s why it’s important to have an open conversation around what we want for our future care in this area.

With the number of people living with dementia projected to rise to 1.4 million by 2040, we’re at an inflexion point. How the system responds to this challenge sends a signal about our wider societal values, including when it comes to recognising the value of life as we age.

A shared responsibility

If we get this right, the prize is substantial. If I look to my loved ones and reflect on my own years ahead, I want to know that we have done all we can to reach the next frontier in managing dementia. Growing older shouldn’t mean having to sacrifice dignity, independence or quality of life.

But realising that potential requires a shared understanding that innovation in dementia does not happen in isolation. It will involve difficult choices and trade-offs across the wider health system. Progress will also demand genuine partnership across parties.

The question is not simply whether we can afford to invest in dementia innovation, but what we expect when it comes to our health, particularly as we grow older, and how we are prepared to make the choices necessary to deliver it.