A leading dementia screening expert from the University of East Anglia will call for the brakes to be put on plans for routine screening today.
He says that the stigma and anxiety caused by being diagnosed with early dementia – long before symptoms are apparent – greatly outweigh any benefits. This is bolstered by the fact that there is no prospect of an imminent breakthrough in treatment.
The number of people with dementia is set to double in the UK within 25 years. Global figures are expected to double every 20 years.
The term ‘early dementia’ refers to the period before a patient is symptomatic. A diagnosis can be made following cognitive tests and a brain imaging referral. However at present the risk of mis-diagnosis is too high.
‘Minor cognitive impairment’ can also be picked up in tests, even though this may never develop into dementia. One in three older people report some form of cognitive impairment – much of which is not dementia.
At present routine screening does not take place in the UK, but there is pressure for it to be rolled out.
Dr Chris Fox, from UEA’s Norwich Medical School, said: “World figures for dementia are sky rocketing towards a predicted 60 million in around 10 years. There is no doubt that we are experiencing a dementia tsunami, with the crest of the wave yet to come.
“But rolling out routine dementia screening will be an even worse disaster in slow motion.
“People who are diagnosed with very early-stage dementia will be worse off than people who are not diagnosed until their dementia is more apparent.
“Routine screening means that people will be diagnosed long before they start to show symptoms. The problem is that a diagnosis can turn someone’s life upside down years before dementia itself does. The main thing that comes with a diagnosis of early dementia is a deeply unfortunate label. And in most cases the stigma attached will do far more harm than good.
“On a personal level, just knowing that you have this illness coming will lead to all sorts of problems – from profound anxiety and stress for the patient and their families, to a loss of independence, an impact on their career if they are still working, and social isolation. And all of this before symptoms are obvious.”
Practical issues include increased health insurance costs, driving licence problems, as well issues surrounding legal and financial matters.
“Current tests are not particularly robust and there is a relatively high risk of mis-diagnosis so all of this turmoil could be even more unnecessary,” he added.
As well as the increased personal stress, Dr Fox believes that increasing numbers of people with an early diagnosis will put an unnecessary financial burden on healthcare systems.
“Vast sums of money will need to be diverted to patients who will have a raised expectation of treatment and support – at a time when health and social care systems are struggling to cope with those who are already known to have dementia, and despite treatment options being very limited.
“At the moment, anyone receiving an early prognosis would receive little more than some medical advice and perhaps some medication that may alleviate certain symptoms for a limited period.
“It is unfair to cause fear and concern when treatments are not available, the chances of the condition actually progressing are not clear, and when symptoms may never take hold in the patient’s lifetime.
“Dementia is an undeniable concern for ageing societies, but the key is a more timely and swift diagnosis when symptoms become apparent – not routine screening.
“Much more must be done before routine screening is rolled out. We don’t know enough about the condition or how it might be managed. There is no prospect of a breakthrough in treatment.
“We need a new roadmap to guide us through this immensely difficult territory. We must assess the benefits and harms that come with an early diagnosis. There must be research into who would benefit from an early diagnosis and develop screening tools that are sufficiently robust. And all of this information must be used to predict the economic outcomes for the NHS and other world healthcare providers.”
Dr Chris Fox will speak at TEDMEDLive Bristol on April 18 between 2-3pm. He will also take part in a live discussion in the evening. The event will be streamed live online at http://www.bristolhealthpartners.org.uk and the event can be followed on twitter #tedmedbristol.
TEDMEDLive is hosted by Bristol Health Partners
University of East Anglia (UK)