Now is the time to improve dementia diagnosis rates.

Imagine living with a terminal condition and not having a diagnosis.  

Right now, around a third of people living with dementia in England and Northern Ireland and almost half of people living with dementia in Wales are in this position.   

The national target in England is that 66.7% of people will get a diagnosis.  This means that even if this target is met, we are accepting that one-third of people with dementia will remain undiagnosed. It’s just not good enough.   

The case for diagnosis 

We need improved understanding of the importance of a diagnosis. There is no cure for dementia, but a diagnosis has myriad benefits.  

Without a diagnosis, people are completely in the dark about their condition.  

Without a diagnosis, they don’t have vital information about what is happening to them.  

But with a diagnosis they can access vital care, support and symptomatic treatments.  

Diagnosis is a key step in a person’s journey with dementia.  Yet on average, it takes 3.5 years from the onset of symptoms for a person to get a dementia diagnosis.   

When diagnosis happens early, it allows people much more time to come to terms with their condition and plan for the future. Not only does this improve people’s quality of life – it can also reduce costly and often traumatic emergency interactions with the health system.  

This is why we need bold, ambitious new diagnosis rate targets set in England, Wales and Northern Ireland – coupled with a health and care system that’s equipped to support people after their diagnosis.   

With a diagnosis, people may be able to access treatments to help improve memory and thinking skills – and, for those with Alzheimer’s disease, medicines such as donepezil can help them manage their symptoms and stay well for longer.   

Disease-modifying treatment and early diagnosis 

Later this year, the first drugs ever that appear to slow the progression of Alzheimer’s disease may be approved for use within the NHS. People may only be eligible for these treatments if they have a diagnosis of Alzheimer’s disease which is both accurate and early enough for the treatment to be effective.  It’s important that our health service has the capacity to make this happen. 

An accurate diagnosis of the type of dementia someone has at an early stage in their journey could determine their eligibility for new treatments.  These treatments appear to slow the progression of Alzheimer’s disease. 

Right now, however, only 2% of people at memory clinics in England and Wales get a specialist test like a PET scan or cerebrospinal fluid (CSF) test, which is needed to confirm eligibility for treatment. 

The biggest health and care challenge of our time 

With the annual cost of dementia now reaching £42billion in the UK, and with prevalence on the rise, it is clear that this devastating condition presents a challenge for everyone in our society.  

One in three people born today will develop dementia, the UK’s biggest killer, in their lifetime.  An ageing population means the number of the UK population with dementia will increase by 43% by 2040, with the biggest increases in Northern Ireland (51%) and London (53%).   

The projected rise in the number of people living with dementia poses a significant healthcare, social care, and economic challenge, and highlights the urgent need for dementia to be made a political priority.   

People we speak to every day tell us that a diagnosis is important. A survey of nearly 3,500 people living with dementia was commissioned by Alzheimer’s Society recently. In responding to the survey, only 1% of people affected by dementia didn’t see the benefit of a diagnosis.   

As well as unlocking vital care and support, a diagnosis can help people living with dementia and their families to understand what is happening to them.  For no other condition would we accept so many people living without a diagnosis.    

Dementia places a significant burden on the healthcare system which increases as the severity of dementia increases. Yet just 1.4% of the total healthcare spend on dementia is spent on diagnosis and treatment.  

Investing in anything that helps to delay progression of dementia symptoms also makes economic sense. As the disease progresses, total costs increase significantly, rising from £29,000 per year for mild dementia to £81,000 for severe dementia.    

Government’s role in improving diagnosis rates 

Following the General Election, we’re now in the first full week of a Labour-led UK Government. During the election campaign, Labour reiterated its commitment to a ‘Fit for the Future’ fund which is due to double the number of CT and MRI scanners to catch a wide range of conditions earlier. 

This would undoubtedly be a positive step for dementia, as both CT and MRI scans are sometimes utilised in the dementia diagnosis process. Additional scanning capacity, paired with Labour’s goal to cut NHS waiting times, presents an opportunity to speed up dementia diagnosis. MRI scans will also be needed to monitor patients on disease-modifying treatments for Alzheimer’s if they are approved. 

During a Parliamentary debate prior to the election, then-Shadow Minister for Care, Andrew Gwynne MP, said that “having a strong central [diagnosis rate] target, and an emphasis from the Minister to make that a priority, is going to be important.” He added that “it will be the priority of the next Labour Government to increase that target.”  

Our goal now is to hold the UK Government to account on that promise – and to ensure that Governments in Wales and Northern Ireland take the same action to make dementia the priority it needs to be. We stand at the ready to support Governments with this.  

It’s clear that too many people go without a diagnosis, or wait so long to get one that they are too late to plan their care as they would wish. Too many may miss out on existing treatments or, in the future, on eligibility for promising new treatments on the horizon.   

We cannot continue to accept a situation where we only aim to diagnose two thirds of those with dementia, depriving a third of all those with dementia of the benefits we know it brings. 

This is why bold, ambitious but achievable new diagnosis rate targets must be implemented across England, Wales and Northern Ireland, with local accountability to ensure they are met.  

Alex Osborne - Policy Manager - Alzheimer's Society