Hundreds of thousands of dementia sufferers risk missing out on ‘life-changing’ treatment after diagnosis rates plummeted during the Covid pandemic, campaigners have warned.
Every region of England fell short of the national target of 66.7 per cent diagnosis rate over the last two years, analysis by Independent to introduce.
The rates are calculated by comparing the recorded diagnoses with the estimated prevalence of the disease. In September this year, 437,236 people aged 65 or over were diagnosed with dementia in England. The NHS estimates there are around 703,000 people living with the condition in England, meaning around 266,000 are considered undiagnosed.
Diagnosis rates reveal postcode lottery for patients, with performance declining across the country from 2019-2020, with South West England faring worst. Scotland, Wales and Northern Ireland do not routinely publish equivalent figures.
Has this story influenced you? If so, please email email@example.com
South West England had an average diagnosis rate of 57.3 per cent in the 12 months from October 2021 to September 2022 – the latest month for which NHS figures are available.
NHS England has stopped publishing monthly data until January 2023. Officials said this was due to changes in how data is collected.
The two best performing regions – North West England and London – saw averages of 66.2 and 66.5 per cent respectively in 2021-22, but still fell short of the target set by David Cameron 10 years ago.
Diagnosis rates were already declining across England in the year before the pandemic and have been declining year after year since. The last time any region met the national target was in 2019-2020, when only London, the North West and the North East were above 66.7 per cent.
The reason for the disparity between regions is unclear. NHS officials in South West England were unable to explain why diagnosis rates were particularly low there.
Across the country, the Covid pandemic has severely affected diagnosis rates, campaigners and the NHS say.
People with suspected dementia are given cognitive tests, usually by a GP, to test their mental abilities. Often the last step in the diagnostic process is a brain scan, when simpler assessments – such as blood tests – have ruled out other problems.
However, many people stayed away from GP surgeries at the height of the pandemic for fear of contracting the coronavirus, and rates have yet to improve even though restrictions ended in early 2022.
Lockdowns have contributed to a huge backlog of GP visits and referrals to diagnostic services. NHS figures released in October show 184,000 patients in England have been waiting three months or more to be tested.
Despite an extra £17 million being transferred to clinical commissioning groups in June 2021 to improve the dementia diagnosis process, the average rate for England in September 2022 was still below target at 62.2 per cent. This is only slightly more than 62 percent. in September of the previous year and still well below 68.8 percent. recorded in September 2019, before the pandemic.
Susan Mitchell, head of policy at Alzheimer’s Research UK, said the situation had “considerably not improved” in recent months, despite a cash injection given to frontline diagnostic services.
She said while it was “much harder” to make a diagnosis of dementia during the pandemic, there was already a “lack of throughput” in the system before the virus hit.
“The government needs to refocus on improving the way people with dementia symptoms are diagnosed as a matter of urgency,” Mitchell said. “The time between referral and diagnosis can be as long as two years. During this time, the underlying diseases that cause dementia can get much worse. This is not acceptable.
“At a time when new dementia treatments are on the horizon, quick and accurate diagnosis has never been more important. Failure to improve diagnosis rates could result in many people losing access to potentially life-changing medicines when they become available.”
Trina Armstrong, 76, from north London, has been waiting four years for an accurate diagnosis of a rare form of Alzheimer’s disease. She first noticed something was wrong in 2006 when she started having trouble recognizing faces and reading phone numbers.
After a CT scan in 2009, she was told she probably had a stroke, which surprised her and her husband Graeme. The couple said they did not recognize any stroke symptoms.
In September 2012, Ms Armstrong was referred to a specialist clinic for vision loss following a stroke or brain injury, where the doctor suggested she might be suffering from a degenerative disease.
She was eventually diagnosed with posterior cortical atrophy, a rare form of Alzheimer’s disease that affects the back of the brain.
Mr Armstrong said it was essential to invest more money and research into diagnostic services. “If we had had an accurate diagnosis four years earlier, Trina might have been given the right medications that could have been more effective and helped her day-to-day,” he said. “We could also access support sooner.”
He added: “Compare this to my diagnosis of early-stage prostate cancer, which was diagnosed, treated and successfully treated within four months. Therefore, we need more research into the diagnosis. If we can do it with cancer, we can do it with brain diseases that cause dementia.”
Dementia, which affects around 850,000 people in the UK, is a syndrome associated with progressive deterioration of brain function. There are many different causes of dementia and many different types, including Alzheimer’s disease.
A study published in September found that the drug slowed cognitive decline in patients in the early stages of Alzheimer’s disease, hailed as a major breakthrough in the treatment of the disease.
Mr Cameron began his battle with dementia in 2012 when he was prime minister, setting a target of an average diagnosis rate of 66.7 per cent by 2020. Successive governments have pledged to try to meet the target, which was described by Alzheimer’s Research UK as “modest”.
In August, Boris Johnson launched a new “national mission” to fight dementia, in memory of the late Carry On i EastEnders star Dame Barbara Windsor. Mr Johnson said the government would provide an extra £95m in research funding, fulfilling a manifesto pledge to double funding for Alzheimer’s research to £160m by 2024.
James White, head of public affairs and campaigning at the Alzheimer’s Society, said it was “concerning” that there were still “drastic differences” in diagnosis rates across England. “While the Covid-19 pandemic has had the effect of reducing diagnosis rates, they need to return to pre-pandemic levels as a minimum,” he said.
White added that ministers needed to do more to remove “the current postcode lottery that many people seeking a diagnosis of dementia are experiencing, ensuring equal access for all, regardless of locality.”
“The sooner people with dementia receive an accurate diagnosis, the sooner they can access the support they need,” he said. “The government promised a 10-year dementia treatment plan in May, but we have since received 22 responses from the government saying the plan would be implemented ‘in due course’.
He added: “The government should seize the hope and opportunity presented by advances in research by urgently delivering a plan and developing tangible solutions to the problems with our diagnostic processes.”
An NHS England spokesperson said the pandemic had had an impact on people’s mental health and that some older people may not have sought help for dementia symptoms, although referrals to memory clinics had increased.
“The NHS is improving support for people with dementia, their families and carers by providing more personalized care packages. Because early diagnosis is so important, if you or a family member think something is wrong, please get in touch as soon as possible.”
NHS England commissioned the Dementia Intelligence Network, part of the Office for Health Improvement and Disparities, to investigate key differences in dementia diagnosis rates across selected areas across England.
A spokesperson for the Department of Health and Social Care said: “During the pandemic, memory assessment services have been temporarily suspended, contributing to a decline in diagnosis rates. These services have been relaunched and offer a more personalized approach to patients – with telephone, videoconferencing and face-to-face meetings.
“Last year we made £17m available to clinical commissioning groups to tackle waiting lists and increase the number of dementia diagnoses, as well as providing support to patients both before and after a diagnosis. We are reviewing plans for dementia in England and further information will be available in due course.”