I knew my husband had Alzheimer's – but for three years doctors insisted it was just stress
One couple's ordeal reveals the scandalous failings of dementia care in Britain…
08:15 GMT, 17 April 2012
The consultant’s tone was compassionate but his words to Shirley Ives were frank and to the point. Her husband, Mick, had Alzheimer’s disease.
It’s the kind of diagnosis that would leave anyone reeling with shock — but Shirley also felt a faint pulse of relief. At last, after a protracted battle that had brought her to the edge of despair, the medical profession was acknowledging what she had long suspected.
Over the past few years, Shirley had watched her husband change from a bright, animated and capable man to someone who seemed confused about where the local shops were. But despite repeated trips to their family doctor, they had been sent away and told Mick had stress or depression.
Relief and anger: Shirley Ives is glad husband Mick is finally being treated for Alzheimer's but is annoyed his diagnosis was not made sooner
‘For three long years, we tried to get Mick’s GP and specialists to listen to my concerns,’ says Shirley. ‘Now, finally, we knew the reasons for my husband’s behaviour — and could make plans, and see what could be done for him.’
This couple’s journey to diagnosis has been harrowing, but theirs is far from an isolated case. A study by the Alzheimer’s Society found that half of people with Alzheimer’s will never receive a formal diagnosis, and of those who do, two in three will wait longer than a year.
They are shocking statistics, made all the more worrying when compared with other countries. In a major study in 2005 involving 2,500 patients, carers and doctors, to compare dementia care in European countries, the UK came bottom of a league table. Britain had an average time lag of two years and eight months between signs of Alzheimer’s being suspected by carers and the medical diagnosis being made.
Delays were more than twice as long in the UK as in Italy and Germany, and nine months longer than in Poland.
'When I went back to the doctor with Mick a few times over the coming months, I was made to feel that I was making a fuss'
Although diagnosis times may have improved slightly since this survey (which include the latest available Europe-wide figures), experts warn that Britain is still performing poorly in comparison with other developed nations. Indeed, on every level — from diagnosis to treatment — the UK’s state of medical provision seems to be in a pitiful state.
A survey conducted by drug company Pfizer among 200 carers from six different European countries (France, Germany, Italy, Poland, Spain and the UK) found a majority of physicians recommended treatment at the time of diagnosis. However, UK carers reported this happened in only 51 per cent of cases, whereas carers in Poland or Spain said it happened in 86 per cent of cases.
‘We’re still a third world country in some respects,’ says Dr David Wilkinson, consultant in old age psychiatry at Southampton’s Memory Assessment and Research Centre, and a leading expert in the field.
‘We’re not as quick to diagnose, because other countries routinely use things such as brain scans and biomarkers — compounds in the spinal fluid — to test for Alzheimer’s, which we don’t because of cost.
‘And while things such as combination drug treatment (prescribing memantine and donepezil together) is now standard treatment in France, Italy, Spain and many U.S. states, we’re still lagging behind, as always.’
Uncertain future: Mick and Shirley Ives on their wedding day
Last week, with figures showing one person is diagnosed with the condition every four seconds, the World Health Organisation called for dementia to become a ‘world health priority’.
Only recently, David Cameron talked of the ‘national crisis’ posed by dementia, which is thought to affect 670,000 people (Alzheimer’s accounts for 70 per cent of cases). A further 400,000 have not been diagnosed and do not know they have it. In the next ten years, the number of people with the disease is expected to rise to a million as the population ages.
Even the National Audit Office has warned the NHS must address failings in dementia care to cope with future demands. It likened the situation to cancer in the Fifties, when patients were not even told they had the disease due to a lack of treatment options.
Alzheimer’s is both progressive and incurable — a key factor in the despair of those facing a diagnosis.
''It was official. My husband was losing his mind, and there was no way of stopping this. I felt sick. But I also felt angry. Why had it taken so long Why had nobody listened to me'
But this bleak picture is compounded by surveys and studies which consistently testify to the paucity of diagnostic provision and care in this country.
A survey published in the Journal of International Medical Research in 2004 revealed just 21 per cent of UK citizens eligible for drug therapy are being treated. France treats 77 per cent of its Alzheimer’s patients.
Similarly, 73 per cent of patients in Italy and 56 per cent in Spain are being treated with acetylcholinesterase anti-dementia drugs, such as Aricept (donepezil).
This works by stopping the breakdown of acetylcholine, a chemical in the brain that works as a messenger between nerve cells, which temporarily stabilises the symptoms of Alzheimer’s. ‘The earlier a person is diagnosed, they more they are able to make decisions while they still have the capacity, particularly about their care,’ says Professor Clive Ballard, director of the Alzheimer’s Society.
‘It also means they are active for longer, and the longer they are active, the better their quality of life and health, and the better they and their carers feel. Yet diagnosis is simply taking far too long.’
When Shirley Ives first noticed her husband, a former power station worker, was distracted and withdrawn, their GP dismissed the symptoms as stress and depression and prescribed antidepressants.
‘The doctor had originally been quite pleasant,’ says Shirley who lives in Ironbridge, Shropshire. ‘But when I went back with Mick a few times over the coming months, I was made to feel that I was making a fuss.
‘I asked about Alzheimer’s because I’d read about it and because there was some family history — Mick’s mother died from the condition at the age of 48. Mick was 60. It was only at my insistence that we got a referral.’
Mick was referred to a geriatrician, who said he didn’t feel there was evidence of any problem other than stress. They were back to square one.
But it was clear to Shirley that her husband was getting worse. Previously a sociable man, he now hated talking to people and was confused by the smallest tasks.
Finally, in December 2007, after Mick saw another GP, they secured a referral to a different consultant. This time they received a concrete diagnosis, based on his behaviour and memory tests: Mick had Alzheimer’s.
‘I was overwhelmed by the most horrible feeling of dread,’ says Shirley. ‘It was official. My husband was losing his mind, and there was no way of stopping this. I felt sick. But I also felt angry.
‘Why had it taken so long Why had nobody listened to me’
However, while Mick had at least been diagnosed, incredibly he was offered no treatment at all. The only drug available on the NHS is Aricept.
Unfortunately, it wasn’t until last year that sufferers with mild to moderate Alzheimer’s could be prescribed the medication.
'This disease is soul-destroying. But at least with an early diagnosis you can have some quality of life for longer'
Out of desperation, Shirley contacted her sister in Turkey, who was able to buy the drug from a pharmacy for 140 a month, using the couple’s savings. The difference was enormous.
‘Mick was sleeping better, he was happy to go out and was more animated,’ says Shirley. ‘Sure, he was still forgetful, but it was so much easier to have some kind of life.’
Today, thankfully, he can get Aricept on the NHS. So why is Mick and Shirley’s story a typical experience of those with Alzheimer’s in the UK — and why are we the sick man of Europe when it comes to this devastating condition
The 2005 Facing Dementia survey of 600 GPs, primary care physicians and specialists revealed some yawning failings in the approach of clinicians here.
Most physicians in France (84 per cent), Germany (83 per cent), Italy (86 per cent), Poland (96 per cent) and Spain (86 per cent) accepted there is a critical window of opportunity for instituting treatment of Alzheimer’s, and most of these said that treatment should begin immediately.
In the UK, however, only about half of physicians felt there was a critical window for initiating treatment. A minority considered that immediate therapy was important, and a majority believed that initiating treatment in two months or more was acceptable.
‘The reasons for this are varied, but I think a lot of the problem relates to the fact that some GPs have a nihilistic attitude to dementia,’ says Professor Ballard. ‘They think: “Well, what’s the point of diagnosis and treatment when there is very little that can be done”
‘Maybe this also produces a knock-on effect, where people in the UK are scared to come forward because they know nothing can be done anyway.’
A further issue is the fact that only specialists are allowed to make an Alzheimer’s diagnosis. This creates a delay between the first signs of Alzheimer’s disease and possible treatment.
A major improvement could be gained by training GPs to diagnose Alzheimer’s at an early stage, which is when drugs are going to have the best effect.
Quality of life: Drugs can work better on Alzheimer's sufferers if they get an early diagnosis (posed by models)
Only one in five of the 500,000 patients with Alzheimer’s in the UK, a third of whom have advanced disease, are currently receiving drug treatment because of a shortage of clinics to diagnose them.
As well as being excluded from diagnosis, GPs in the UK — unlike in France, Portugal and Belgium — cannot prescribe Aricept because this has to be done by specialists in dementia care.
And even though the Government’s health watchdog, the National Institute for Health and Clinical Excellence (NICE), recently changed its remit so Aricept can now be prescribed to those with mild as well as moderate dementia, this is taking time to filter through.
‘Only 10 per cent of people with Alzheimer’s are getting access to Aricept,’ says Professor Ballard, ‘either because they aren’t being diagnosed or because their trusts don’t provide it.’
What frustrates many experts even more is that science is continuing to show the capabilities of the drug in dealing with the disease. Aricept is not generally prescribed once Alzheimer’s reaches its later stages, but a recent study of 295 Alzheimer’s patients by the Medical Research Council found the drug works even when the condition is advanced.
The study found that over 12 months, patients who stayed on Aricept had a slower decline in their mental ability than those who stopped using the drug.
‘Patients were better able to remember, understand, communicate and perform daily tasks than those who stopped taking the drugs,’ said Professor Robert Howard, of the Institute of Psychiatry, King’s College, London, who led the study.
Dr Wilkinson blames the British medical profession’s ‘innate conservatism’ for the fact so few Britons can access drugs like Aricept.
‘I and others have been saying for three or four years that there’s now no question patients should have combination drug therapy — and this treatment should start as soon as Alzheimer’s is diagnosed. But it will be at least another five years before NICE approves it.’
Another knock-on effect of the UK’s inability to pick up early cases of the disease is that it limits the chance to find other effective treatments. Karl Herholz, professor of clinical neuroscience at Manchester University, says a lack of patients being picked up at early stages hampers the very research that could help them. ‘The advantage of early diagnosis is that patients can participate in clinical trials, which may give them a chance to improve, and hopefully help us prevent the disease developing so rapidly.’
As our population continues to age, it remains terrifying to think it is our own doctors who are restricting the flow of Alzheimer’s diagnosis and treatment.
Adds Shirley Ives: ‘This disease is soul-destroying. But at least with an early diagnosis you can have some quality of life for longer. What right has any doctor in this country to take that away’