Put dementia on par with cancer to boost diagnosis rates, UK’s top expert says

Dementia diagnosis rates would improve if the disease was given the same priority as cancer, one of the UK’s top experts on the condition has told i.

Fiona Carragher, director of research and influencing at Alzheimer’s Society, said greater awareness from the top of government and NHS England down to local integrated health boards would help patients get a quicker diagnosis and targeted support.

Some 982,000 people are now estimated to be living with dementia in the UK – higher than previously thought – according to an Alzheimer’s Society report published this year, a figure projected to rise to 1.4 million by 2040.

Despite post-pandemic recovery efforts the latest dementia diagnosis rate of 64.8 per cent remains below NHS England’s target of two thirds, although officials believe it will be met by the end of the year. If it does, experts want the bar raised.

Ms Carragher said: “One in three people born in the UK today will develop dementia. It’s the biggest health and social care issue of our time, yet it isn’t the priority it should be amongst decision-makers. We wouldn’t accept this for any other terminal disease, we shouldn’t accept this for dementia.

“Dementia is about 40 years behind cancer when it comes to research, but it has a lot of the same journey to make. Just as we’ve seen a transformation in cancer treatment in recent decades, we’re really hopeful we’re on the same path for dementia.”

Ms Carragher said although dementia is the UK’s biggest killer, one third of people are not getting a diagnosis. There also remains “significant variability” in rates across the country, from as high as 76 per cent in Greater Manchester down to 52 per cent in North Yorkshire, according to latest figures for March.

She said: “It’s not just a frail, older person’s care issue, but something that starts in the NHS with good early diagnosis and a seamless step into those diagnostic pathways. Investment in workforce and infrastructure are also key; at Alzheimer’s Society we also want to see a much more ambitious bold target for our diagnosis rates. We’re still having those discussions to form consensus as to what a bold and achievable target would be.

“The pathway to diagnosis first starts with people thinking something like forgetfulness is a normal part of ageing. There’s still a huge myth that there’s nothing you can do about it as it’s part of getting old, which results in awareness issues.

“Then, when people do finally go to the GP, they’re not necessarily getting referred on for specialist help. And post-Covid we still have significant waiting lists: memory clinics and mental health trusts are really only just getting back up to capacity.

“Finally, when people do get into memory clinics, they’re not getting access to high-end diagnostic testing that they should be under NICE [National Institute for Health and Care Excellence] guidance. So there are issues all along that pathway. Covid knocked out a lot of that and things are just recovering.”

Ms Carragher praised the likes of Alastair Stewart who go public with their experiences. The broadcaster gave interviews last week revealing the first warning symptoms that prompted a visit to the GP which led to his dementia diagnosis.

“Anyone who speaks publicly in that way is incredibly brave. We need dementia to come out of the shadows as so many people think it’s a natural part of ageing. It’s not getting old, it’s getting ill. It’s a disease of the brain and telling those stories are incredibly important,” she said.

Alzheimer’s Society provides a checklist, in collaboration with the Royal College of GPs, which helps give people and their loved ones a way to prepare for a trip to the GP, so they have some evidence about the potential symptoms they are experiencing.

Ms Carragher said: “It’s different in different people but there are a lot of symptoms that are the most common, such as repeating questions, not being to tell the time on an analogue clock or tying your shoelaces.”

Over 90 per cent of people who responded to a recent Alzheimer’s Society survey said they benefited from a diagnosis, highlighting the importance of getting confirmation.

“There’s often some relief in knowing what is going on, but it also enables people to plan and prepare for the future: to have those really good conversations with their loved ones,” Ms Carragher said.

“And to put in those practical elements in place, such as power of attorney, because so often they are dealt with during a crisis. You are having to make those decisions after someone has ended up in hospital or their care needs have accelerated really quickly.”

Two world-class research teams are carrying out nationwide trials to identify accurate and quick blood tests that can diagnose dementia, in a bid to improve the UK’s diagnosis rate. The teams at University College London and Dementias Platform UK, based at the University of Oxford, will capitalise on recent breakthroughs in potential dementia blood tests, and generate the evidence needed for them to be used in the NHS within the next five years.

A new generation of drugs that can treat dementia at its earliest stages will also become available in the UK soon but present methods of diagnosis mean 98 per cent of people with dementia will receive a diagnosis too late to benefit from them.

Ms Carragher said: “Diagnosis will be key to the access of any new treatments. We can’t have a situation where treatments are approved for use in the UK but people aren’t diagnosed early or accurately enough to be eligible.

“We need early, and accurate, diagnoses available for everyone and the NHS ready to roll out treatments such as donanemab and lecanemab if and when they are approved in the UK. There are 141 global clinical trials under way which could result in more drug treatments.

“Meanwhile, if we have blood tests that are cheap and easy to use and really robust, that’s going to help us figure out which people should go on to have those expensive imaging tests. And also which people we could reassure. It’s not the only solution that could transform care, but it is one innovation we hope will be a big help.”

An NHS spokesperson said: “While the pandemic inevitably had an impact, thanks to the hard work of NHS staff England has one of the highest dementia diagnosis rates in the world and has plans to improve rates even further in 24/25.

“Diagnosing dementia early can make a big difference so please come forward to your GP as soon as possible if you have concerns you are showing symptoms.”

To see Alzheimer’s Society’s checklist for dementia symptoms visit www.alzheimers.org.uk/form/checklist-for-dementia-symptoms