Published on: January 29, 2013
by Ilsa Whitcroft for The Daily Mail:
The meeting had been arranged to discuss a patient’s care. GP Jennifer Bute, as the senior doctor, introduced herself and the patient’s parents. She then turned to introduce one of the other doctors sitting at the table.
‘As I didn’t know him, I asked whether he would be good enough to tell us his name and interest in the case,’ recalls Dr Bute, 66. ‘I saw this look of indignation and bewilderment sweep across his face.
‘“I’m a mental-care officer and I’ve known you for years, Jennifer,” he said. “What do you mean you don’t know who I am?”
‘I tried to cover up my mistake, moving on quickly to introduce his colleague, someone else I had never met before. To my utter horror, the same thing happened. It transpired that this stranger had also worked with me for years.’
‘No one mentioned it to me later and somehow I got through the meeting. But that night I left the practice where I’d worked for more than 20 years and went home to tell my husband Stanley that I was no longer safe to work in the job I adored because I knew I was in the early stages of dementia. He was dreadfully upset and tried to dissuade me but I think deep down he knew something was wrong.
‘Over the previous year or so I’d not only had trouble recognising really familiar people — such as neighbours I’d known for years and relatives in photographs — but I also had difficulty remembering tasks I had just started, such as ironing.’
Jennifer, who’d been a GP for 30 years, had sought help for these symptoms but was dismissed as being neurotic. But a few days after that disastrous meeting in February 2006, she resigned.
‘The other doctors were annoyed with me — adamant there was nothing wrong,’ says Jennifer, who has three children: Paul, 39, David, 37, and Alison, 35.
‘I think because I’d been covering it up so well, they simply couldn’t understand what I was telling them. One even said I was imagining things.
‘I honestly don’t believe I ever put a patient at risk, because my medical knowledge was so embedded in me. But I was aware I could forget things such as referrals.
‘To compensate, I became ruthlessly efficient, writing everything down as soon as I had spoken to the patient and following up referrals immediately. However, I knew that if I continued working I could no longer guarantee this.
‘I couldn’t blame my colleagues — after all, I’d seen two neurologists in two years and both gave me a clean bill of health.’
Jennifer had seen the first neurologist in 2005. But she says he ‘hardly let me sit down before telling me there was nothing wrong. He asked me a few questions — who the Queen was, some dates from history — then said I was fine.’
She saw a second neurologist a year later. He carried out an MRI scan and a more detailed assessment that analysed her language, memory and motor skills. He agreed she had some problems with memory — but didn’t think they were significant. Jennifer says: ‘I felt humiliated that no one believed me.’
But she was right, and finally in September 2009 — four years after her symptoms began — she was told she had dementia. Sadly, her battle for a diagnosis is not unique — experts believe nearly half a million people live with undiagnosed Alzheimer’s in the UK.
Dr Anne Corbett, research manager of the Alzheimer’s Society, says: ‘A shocking 60 per cent of people with dementia never receive a diagnosis.’
Whether sufferers are diagnosed or not may partly depend on where they live, according to figures released by the charity last week.
It said there was a ‘disgraceful’ national variation — just 32 per cent of sufferers were diagnosed in the East Riding of Yorkshire compared with 76 per cent in Belfast.
Dr Corbett says: ‘This means hundreds of thousands don’t have access to vital support and treatment that could help them live a good life and plan for the future.’
On average, it takes 32 months from the onset of symptoms for someone to be diagnosed in the UK, compared to 24 months in France and ten months in Germany.
This time living without a diagnosis can be terrifying, as Jennifer discovered. ‘Because the two neurologists had been so dismissive, I simply learned to cover up or rationalise my symptoms,’ she says. ‘But some were more difficult than others.
‘I suffered terrible olfactory hallucinations, such as smelling cigarette smoke when there was none, and aural hallucinations, such as hearing babies cry when no baby was nearby. Later on, I started to see people in the house when I knew they weren’t there.
‘I know now these are symptoms of the disease but only because I looked it up on the internet. No doctor I saw ever asked if I was having hallucinations, so I thought I was going slightly mad. When I was diagnosed by a third neurologist, I almost wept with relief. My husband wept because he was so upset.
‘But he came to understand it was better to be able to deal with it rather than trying to hide away from it.’
Jennifer believes the UK system of diagnosis too often misses people in the early stages because tests GPs use rely too much on factual recall.
‘I didn’t tick certain boxes so as far as the medical profession was concerned I couldn’t have dementia, and was sent away to cope as best as I could.’
This concern is echoed by Dr Richard Perry, consultant neurologist at Imperial College London and lead clinician at Re-cognition Health, a clinic specialising in treating dementia. He says: ‘The current tests carried out by GPs — the Mini Mental State Examination — while very useful as a tool for establishing how the disease is progressing, are not as efficient for diagnosing the condition at an early stage.
‘It relies on memory of facts, and many people with early-onset Alzheimer’s still have a good recollection of facts. Therefore, it is quite possible for people to fool the results. You remember the date you were married but you forget, say, that you put your keys on top of the fridge yesterday.’
The lack of accurate testing means patients are not referred for a full assessment, so don’t receive medication that can help in the early stages.
Once Jennifer was diagnosed she was prescribed Aricept, which stops the destruction of brain messengers responsible for memory and learning. She says: ‘Within three months I could hold a proper conversation again, my hallucinations had gone and I could start to get some control back in my life.
‘Had I been put on medication by that first neurologist, I may have been able to continue working, albeit in a reduced capacity, for much longer.’
In 2010, she and her husband moved to a residential home in Somerset, but sadly Stanley died last year.
Jennifer, who is unable to read books, listens to talking ones and tackles her memory problems with her previous efficiency — for example, ensuring she replies to emails as soon as she gets them.
Remarkably, she has no bitterness and sees her condition as a blessing — a chance to help others. She has now set up a website for sufferers and their families.
‘I believe it is a gift to experience Alzheimer’s from the inside,’ she says. ‘I see it as a wonderful chance to explain and educate others about dementia.
‘I am passionate about encouraging others to overcome the problems it brings.
‘But this has to start with the diagnosis. I tell GPs not to rely on the MMSE but to watch and listen out for clues, such as if a patient who doesn’t usually miss their appointment suddenly starts doing so or starts writing lots of lists.
‘And I beg GPs to ask about hallucinations. We don’t know how many people with dementia suffer hallucinations, simply because we are not asked.
‘I am convinced hallucinations go a long way to explaining why some people with Alzheimer’s can become agitated or aggressive. If you think you are hearing a baby cry — as I did for hours — and can’t get to them, you will become distressed.
‘My children have been wonderful, as loving and caring as ever, and my grandchildren accept me as I am. I am not scared of the future — I live each day as it comes.’
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