There’s a story in the news today about a man whose who suffered life changing depression after being misdiagnosed with Alzheimer’s disease.  It wasn’t an immediate diagnosis, but one that came after two years of tests and scans. Alarming aspects to this story are that the diagnosis was based on a hypothesis that has been proven to be false, and that misdiagnoses like this are happening all the time. *1

Misdiagnosed 88 year old Mrs Hill

Over a period Martin became anxious that he was forgetting things, and his GP referred him to a dementia clinic at a London teaching hospital. The diagnosis came because the consultant wanted to diagnose a medication that is prescribed for Alzheimer’s, but needed first to make an official diagnosis.  She told him that scans showed that his ‘hippocampus was riddled with sticky plasma of the kind indicating Alzheimer’s.’  Although he felt he had to trust the consultant’s judgement, he and his wife asked to see the scans showing how the disease had progressed over the past two years.  She said she didn’t have the equipment to show them, so Martin asked for a second opinion.

His wife said the diagnosis had a profound effect on him.  He said, ‘from the moment I saw myself as an Alzheimer’s patient I began to dismantle my life and my dreams of the future.’  He retired from his job, terminated a contract with a client he worked for four decades, cut back on plans he had made that included voluntary work and adventure holidays.

Eventually he saw consultant neurologist Dr Catherine Mummery, at the National Hospital for Neurology and Neurosurgery in London.  Dr Mummery said she sees several cases a month where the diagnosis should either be of another dementia,’ or where we have to retract the dementia diagnosis altogether.’

‘Martin was given a diagnosis based on a PET scan of his brain; however there are a number of conditions from menopause to depression or schizophrenia where changes may take in brain metabolism, so caution is needed.”

It’s interesting to see that protein deposits on the brain are still being seen as the cause of Alzheimer’s when this theory was publicly discarded last year, after increasing studies  showing that older people can have quite large deposits but no dementia at all.  The ‘amyloid B hypothesis’ was finally dismantled by a leading neuroscientist, Dr Bart de Strooper, at a major European neuroscience conference.  A front-page headline in The Times blazoned how, after 20 years of failure to find a cure, the ‘amyloid B hypothesis’ was now abandoned.  Instead, researchers in eight research centres in the UK and Europe are now looking into the effects of inflammation on the brain’s immune system.  (See https://blog.pilgrimsfriend.org.uk/big-turn-around-alzheimers-20-years-failure/)

The head of research at Alzheimer’s Research UK says that only 60% of those estimated to be living with dementia have a formal diagnosis.  It could be that among the numbers diagnosed, 534,621, there may be similar misdiagnoses.  (I wrote last year about the 88-year-old wrongly diagnosed who sold her house and went into a specialist unit only to be told a year later that she had mild cognitive impairment, caused by depression.)

The figure commonly quoted for people with dementia in the UK is 850,000 – 315,379 higher than the actual number of 534,621.  That 60% estimate – and that’s all it is – is based on projections calculated in the 1980s, that have not been realised.   The rate of new cases of dementia has dropped by 20% over the past two decades.  *2

Arguably, the advertisements that the Alzheimer’s Society produces are fear-based. ‘I wouldn’t want my daughter to go through what I’ve been through with my mother,’ intones a current radio commercial.

So it’s not surprising that the dread of dementia is such that, when an older person finds themselves becoming forgetful, they assume it is dementia.  And with the push for more diagnoses and the use of misleading figures,  even the experts are getting it wrong.

Once I made a mild protest to an Alzheimer’s advertisement on social media, pointing out the inflated figures used.  Back came the sharp retort that I was being mealy-mouthed about the figures because dementia was bad, never mind the actual numbers who have it, and people should donate to research into it.

Yes, we do need research.  Two leading pharmaceutical companies have dropped their research budgets because of the failure of the past 20 years.  But is it right to put out fearful advertisements and articles that are pushing people into misdiagnoses?

*1  https://www.telegraph.co.uk/health-fitness/body/wrongly-told-had-alzheimers-disease-not-one/

*2 (See https://www.alzheimersresearchuk.org/study-reports-20-drop-in-uk-dementia-incidence-over-two-decades/?gclid=Cj0KCQjwof3cBRD9ARIsAP8x70PoMS0YFazUITkt2KqryQZXTI8YzVC5JiFIdpbcqmWTqsNq4SMzWS4aAk0sEALw_wcB)

 

 

Louise Morse

Louise Morse MA (CBT) is media and external relations manager for the Pilgrims’ Friend Society. She is a writer and speaker, and author of books on issues of old age, including dementia, published by Lion Monarch and SPCK. She is a cognitive behavioural therapist, and her Masters’ dissertation examined the effects of caring for a loved one with dementia on close relatives.

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