When he launched his ‘challenge on dementia’ a year ago, Prime Minister David Cameron fired the starting gun on a frantic stream of activity at the DH.
To the delight of dementia charities, he said diagnosis and awareness levels were ‘shocking’ and accused the NHS of ‘collective denial’ over the true prevalence of the disease.
He then tasked civil servants with raising diagnosis rates for the condition by 2015, with GPs at the forefront of the plan. Now practices face a potential £3,600 cut in income if they do not sign up to a new dementia case-finding DES from April, funded by the retirement of QOF indicators.
But GPs are questioning the basis of the DES, and weighing up the pros and cons of labelling thousands of patients as having dementia when the services to support them may not be in place and the diagnosis could have far-reaching consequences for their daily lives.
As controversy over the programme grows, Pulse asks if the Government’s plans for dementia case-finding could cause more harm than good.
The drive to increase diagnosis rates is based on figures showing that only 42% of people with dementia in England have a formal diagnosis.
The Alzheimer’s Society estimates were based on age-specific rates determined in a review of evidence by King’s College London and the London School of Economics in 2007. They show wide regional variation, with as few as 34% of the true number of cases diagnosed in North Wales and as many as 70% in Glasgow (see map).
A spokesperson for the charity says the variation is due to a lack of ‘joined-up’ services: ‘GPs want to know that there are places they can refer to and that there are services in place, so there’s no reason to have a nihilistic attitude.’
But health secretary Jeremy Hunt has gone much further, accusing GPs of being unable or unwilling to diagnose dementia, and showing a ‘grim fatalism’ that denies patients access to treatment.
In a recent article in the Daily Telegraph, he claimed: ‘Some even believe that without an effective cure there’s no point putting people through the anxiety of a memory test – even though drugs can help stave off the condition for several years.’
In the Spectator, Conservative commentator Richard Marsh attributes this emphasis on dementia to a sign of a canny minister who knows it is important to be seen to take action on a disease of great public concern.
The move may be good politics, but is it good medicine? The most recent NICE appraisal of anticholinesterase inhibitors concluded that they offer only small clinical benefits for cognitive function and have uncertain benefits for behaviour, and there was little evidence to support anecdotal claims they reduce progression of dementia and delay time to institutionalisation.
The drugs are now recommended by NICE as options for managing mild as well as moderate Alzheimer’s disease, but as author and Alzheimer’s patient Sir Terry Pratchett says, drugs for dementia are like ‘sandbags in the stream’ – they slow its progress but don’t stop it.
Since last March, targets to increase diagnosis rates have been included in the NHS outcomes framework, ‘dementia champions’ have been placed on hospital wards and an audit of prescribing in dementia has been launched.
But the biggest change will be in general practice, which will be tasked by the new DES with screening all patients aged 75 and over, those aged 60 and over with risk factors, and all patients with learning disabilities or long-term neurological problems.
Who is likely to be screened under the DES?
- Patients aged 60 and over with CVD, stroke, peripheral vascular disease and diabetes;
- Patients with learning disabilities
- Patients with long term neurological conditions (such as Parkinson’s disease)
- All other patients aged 75 and over
The DH’s proposed specifications for the DES – due to be finalised in the next few weeks by the NHS Commissioning Board – suggest patients should be questioned ‘to establish if they are concerned about memory’; then a specific test, such as GPCog, should be used to detect any early signs.
If a patient has suspected dementia, GPs will be mandated to refer them to specialist services, such as a memory clinic, to confirm the diagnosis, then provide treatment if necessary and give advice and support to the patient’s carer.
The DH says the DES is designed to promote early diagnosis, and insists it is not a screening scheme.
‘We are suggesting GPs could deliver a proactive approach to assessing patients known to be at risk as a way of improving diagnosis and care.’
The DES has proved controversial so far, with a group of doctors, including former RCGP president Dr Iona Heath, setting up a petition opposing it.
They claim the DES case-finding programme is being introduced without any evidence of benefit and that it could harm patients through misdiagnosis and overtreatment, as well as distressing patients and their families.
Dr Martin Brunet, a GP in Guildford, Surrey, and one of the doctors leading the petition – which has 300 signatures – says the DES could confuse patients. He says: ‘There’s no consent, no prior warning, which makes it quite unethical. I think the Government and the people promoting this are being paternalistic and not respecting patient consent, choices and autonomy.’
The group has been invited by dementia tsar Professor Alistair Burns to propose an alternative way of boosting diagnosis rates but has yet to agree on the possible solution.
Dr Brunet says current services need improvement, as waiting times at memory clinics are too long and patients with dementia don’t receive adequate help, for instance with advanced care planning or power of attorney. He says: ‘People promote early diagnosis to say we can help patients plan for the future, but we don’t help them do that – we’re just giving someone a label of dementia and leaving them to get on with it. Having a diagnostic label of dementia without support is probably worse than not having it at all.’
We have difficulty with knowing the threshold for diagnosis
Dr Eamonn Jessup
Dr Eamonn Jessup is a GP in Prestatyn in North Wales, an area often dubbed ‘the geriatric coast’ because of the number of retired people, but which also has some of the lowest rates of dementia diagnosis in the country.
He has doubts about how case-finding will work because of the grey area between mild cognitive impairment and Alzheimer’s disease.
He says: ‘We have difficulty with knowing the threshold for diagnosis – at the end of the day what can we actually do for people with dementia? We can put a good team around them to support the family, but the medications are not great.’
But not all GPs agree. Dr Ian Greaves, a dementia GPSI in Gnosall, Staffordshire, warns that late diagnosis often leads to catastrophic consequences.
He says: ‘People are admitted with an acute presentation and diagnosis is occurring in a hospital setting.
‘That leads to an extended hospital stay and the only option then is for them to go into a care home. It would make a lot of sense if people got a diagnosis at the appropriate time and had a care plan that went in with them to the hospital.’
According to Dr Greaves, there are many positive examples of GP practices providing better care for dementia patients. He argues: ‘I would like to see our profession value [early diagnosis] because of the value it offers patients, not just because it’s put into the QOF or a DES.’
Dr Nick Cartmell, a GP in Ashburton, Devon, and clinical lead for dementia at NHS Devon and the South West Dementia Partnership, says: ‘We should not be pursuing early diagnosis purely for the sake of increasing prevalence figures, but rather ensuring timely diagnosis for people who will benefit from that diagnosis.’
We should not be pursuing early diagnosis purely for the sake of increasing prevalence figures
Dr Nick Cartmell
He suggests the DES should be narrowed to cover screening solely of those on QOF registers with a previous stroke, TIA or ischaemic heart disease, as they are more likely to have dementia. He adds: ‘The current emphasis on increased prevalence should be matched by an equal emphasis on the provision of high-quality post-diagnosis services across the UK, so we don’t simply diagnose more people only for them to fall into a “care vacuum”.’
EXPERT VIEW: ‘GPs are right to be wary’
I am not sure the scale of the problem is as big as the Government thinks it is. In our EVIDEM study of GP dementia diagnosis, we are not finding large numbers of patients you have to do anything with. The idea that there is some massive unmet need is probably not right.
I suspect some [prevalence] figures have been inflated over time.
We are finding a tendency to under-document dementia in the QOF. GPs are cautious over labelling patients with dementia – this is understandable and may be right.
The patient may respond negatively and it might be the last thing they want on their records. It does close the door to some things, particularly rehabilitation services, for instance, post-stroke.
There is a lot of GP bashing over dementia that is not warranted.
Professor Steve Iliffe, professor of primary care for older people at University College London and a GP in Kilburn, north west London, is leading the unpublished EVIDEM study
The National Screening Committee’s assessment for Alzheimer’s in June 2010 concluded there was not enough evidence to warrant population screening, although another review is due to report this year.
There is also some evidence to support the claim that patients commonly experience anxiety and distress while waiting for a definite diagnosis. A small study published in the British Journal of General Practice recently looked at the experiences of 27 patients referred by GPs to memory clinics in England, and found they felt ‘abandoned and ignored’ while awaiting a diagnosis. The authors recommended policymakers should act ‘cautiously’ before urging more rapid diagnosis’.
And Professor Steve Iliffe, professor of primary care for older people at University College London, says unpublished data from his EVIDEM study on GP dementia diagnosis suggests the Government is exaggerating the potential benefits of the DES (Expert view, below).
Access to memory clinics is another significant issue, with a report by MPs last year finding waiting times of up to a year.
CCGs are to be measured from April on memory clinic waiting times, but it is unlikely they will be given additional funding and GPs fear these services will be swamped.
Dr Lindsay Hadley, a GP in Bexhill on Sea, East Sussex, has set up her own primary care memory clinic after becoming frustrated at delays in her area, and says it has been ‘overwhelmed’.
She says: ‘Where we are, about a third have been diagnosed with dementia and this DES is going to push it up to 70% or 80%. But there aren’t the services.
‘The answer is to develop primary care memory services. It would be more important to have a LES for helping with diagnosing and looking after people with dementia.’