Over 50% of local authorities in England are falling short of the national dementia diagnosis target leaving hundreds of thousands without a vital dementia diagnosis.
This comes as an inquiry from the All-Party Parliamentary Group (APPG) on Dementia revealed where you live has a ‘massive impact’ on whether you will get a timely, accurate and high-quality dementia diagnosis.
The group of cross-party MPs, alongside dementia charity Alzheimer’s Society, is calling for a levelling up of diagnosis rates – as well as an urgent improvement in the speed and accuracy of dementia diagnosis, particularly in rural and ethnically-diverse areas.
For example, in Swindon, one of the lowest performing areas with a rate of 49.7%, 766 people are missing out on a diagnosis.
Although dementia is the UK’s biggest killer, over 250,000 people with dementia in England are estimated to be living without a diagnosis, 1 unable to unlock vital treatments, care and support.
While there is currently no cure, there are treatments available, and new drugs coming down the line which could delay progression of the condition. However, future drugs will require people to get a diagnosis of the disease causing dementia, such as Alzheimer’s disease, but latest data shows that Alzheimer’s disease and vascular dementia are still under-diagnosed compared to known prevalence rates.
This month’s NHS figures show over a 40-percentage point difference in diagnosis rates between the highest and lowest areas in England 1. The inquiry, led by Labour MP Debbie Abrahams and Conservative Peer Baroness Angela Browning, reveals a complex picture of why there is such a disparity, and calls for better data to understand how factors including the availability of brain scanners, transport access, deprivation, rurality and ethnicity are playing a part.
The report 2, which includes findings from a survey of over 2,100 people affected by dementia in England, suggests transport is a major barrier to diagnosis. One in four people reported being unable to make appointments because of travel problems, with 78% relying on other people for transport. To combat this, the report proposes that every Integrated Care System (ICS) in England increases service provision to ensure that people can get a diagnosis closer to home.
Ethnicity was also shown to impact the chance of someone getting a timely dementia diagnosis, with people struggling to access diagnostic assessments in their own language, and with cultural references relevant to them, alongside stigma in communities stopping people coming forward with symptoms.
Dr Karan Jutlla, Alzheimer’s Society Ambassador and Dementia Lead for the University of Wolverhampton, who gave evidence at the inquiry, said: “When we’re trying to understand the challenges ethnic communities face getting a dementia diagnosis, we need to look behind the headline figures. Wolverhampton has a relatively high dementia diagnosis rate, but this is disguising challenges of the 35.5% of the population who are from ethnic communities.
“From my work I know very, very, very few people from these communities are presenting themselves to services. To be able to quantify this we need to start recording the ethnicity of people who do come forward.”
The inquiry calls for urgent action to reach ethnically diverse communities, and take lessons from areas where community engagement has driven up rates. In Leeds the Touchstone BME dementia service reaches out through community and faith groups, raising awareness of dementia in different languages.
Encouragingly, the inquiry found that ICSs with the right healthcare systems in place can overcome factors like deprivation and rurality. For instance, in rural Somerset, which has traditionally had low dementia diagnosis rates, there has been a 30% increase in referrals per month since a new service was adopted last year, doubling the number of Dementia Support Workers in the county.
Also encouragingly the local health service in Swindon has recently committed to increasing rates through improving capacity in memory assessment services, including building ‘Rapid Assessment Diagnosis’ clinics.
APPG on Dementia co-chair Debbie Abrahams MP, who led the inquiry alongside Conservative Peer Baroness Browning, said: “All of the evidence shows that timely diagnosis is crucial for people with dementia, particularly in increasing access to drugs like donanemab, a new potential treatment for Alzheimer’s Disease.
“But this report shows that at the moment diagnosis rates are simply a postcode lottery.
“It could not be more clear now that we need Integrated Care Boards to introduce strategic local plans to increase access to diagnostic services. Likewise, the Government must significantly increase scanning capacity and workforce.”
Fiona Carragher, Director of Research and Influencing at Alzheimer’s Society said: “Dementia is a devastating disease, and delays in diagnosis can lead to crisis. We know 1 in 4 people with dementia battle symptoms for over two years before seeking a diagnosis, and a third of these people have an accident before looking for help.
“This inquiry lays bare the stark inequalities that still exist in getting a diagnosis – it’s unacceptable that your postcode, your mobility, or your support network can all be factors determining your chance of getting the diagnosis you deserve. Today hundreds of thousands of people are facing dementia alone, unable to access the vital help and support that a diagnosis can bring.
“Breakthrough drugs like lecanemab and donanemab are coming round the corner, and everyone should have equal access if the drugs reach the clinic. This means giving people a timely, accurate and specific diagnosis of which type of dementia they have – so we can get drugs to the people who are able to benefit, and fast.
“Today’s report shows pockets of excellence in diagnosis, and areas bucking the trend through innovation. Improvement is possible, but we need more tailored services across the country, and better local planning by Integrated Care Systems to help bridge the gap and reach underserved communities.
“There’s more to understand in terms of why diagnosis rates vary so dramatically – Alzheimer’s Society is calling on the Government and NHS to gather the data that’s needed to find the root cause of these inequalities across the country.”
To address the inequality in people’s chance of getting an accurate sub-type dementia diagnosis, the inquiry calls for the earliest possible adoption of blood-based biomarker tests, which would reduce the need for expensive and scarce brain scans.
Alzheimer’s Society, along with Alzheimer’s Research UK and the NIHR, have launched the Blood Biomarker Challenge – a £4.5m award which will gather the information needed to introduce a blood test for dementia into UK healthcare systems. This blood test would be a crucial step in speeding up how quickly and how early people are able to get a diagnosis of dementia.
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