Get real

Overheard in a pub...

'Mum used to like coming here, do you remember, Dad?'

The old boy seemed to shrink into his grey cardigan and shook his head.

'Yes you do, she liked the fish and chips...'

He shook his head again, his eyes filled with tears.

'Oh don't mind him, he's got, you know... dementia.'

What is the point of asking someone with dementia if they remember?  That's the whole point of dementia.  The whole cruel point.

There's a difference between remembering and forgetting.

I'm starting to wonder if we are all, collectively, forgetting about dementia?  Maybe, it's just too difficult?

The government's Green Paper, on the future of adult social care, is a convenient way of parking a difficult problem.  A problem underpinned by the achingly difficult challenge of a population of 800,000 people living with dementia, projected to reach a million in next-to-no-time.

Green Paper consultation; finished in the New Year... then, some thinking time and a White Paper.  More consultation.  Maybe finished in time for the summer recess?  Next September a draft Bill.  Through Parliament, onto the statute books and in the 2019 budget for funding and in operation by April 2020.  If there isn't an intervening election.

Don't hold yer breath.

In the meantime, not a cure in sight.

One of the most hopeful drugs, Interpirdine, has been pulled from late stage trials.  Aducanumab might yield hope by 2020, all being well... if it doesn't go the same way as Solenezumab.  Another failure.

Targeting the brain's sticky 'ameyliod beta' plaques and deciding if they are the cause or the symptom, is very tricky.  And, very expensive.  The Pharma-sector could well be losing its appetite for risk.  How long can biotech companies expect to raise funding for fruitless research.

There isn't just one type of dementia.  That means we may be looking for more than one cure.  Is the answer in encouraging the body's own immune system to tackle the problem?  Much like the approach used in cancer research.

By the time someone develops symptoms of Altzheimer's, it is likely they will have had the disease for twenty years.  We just don't know enough, soon enough.

GPs asking; 'who is the prime minister' is far too late.

What we now call early diagnosis is probably missing the boat.  The handful of drugs we have now only deal with symptoms... not much help in halting or slowing progress.

Drug development is a huge and expensive gamble and Pharma hasn't had much luck.

The number of people and families swept up in the agony of dementia puts this squarely into the bracket of a national emergency.  We have no treatments, not enough money and no idea what to do next.

If Government is looking for strands to its post-Brexit industrial strategy, creating tax-breaks for UK research into a cure for dementia would be a good place to start.  If a company comes up with a winner the prize is measured in billions, not millions... there is a market of 44 million people world-wide.

Encouraging biotech and pharma companies to pool resources, research and innovation maybe a forlorn hope but how else's to hasten research measured in decades, for a solution that is needed next week.

The Green Paper?  I can guess... it will find a way to transfer the risk to individuals and their families.  Tax breaks for carers, tax-lite savings bonds to accumulate assets and cash, to prepare for the inevitable.  No matter how you dress it up, this is a problem that needs money thrown at it, lots of it and probably yours.

We will need to train an army of dementia carers.  The present workforce is nowhere near big enough, or ready enough and many care homes, ill equipped and too horrible for words.  The regulators should encourage sector consolidation, demand better training and mandate minimum staffing as part of registration.

I detect there is a resistance to early diagnosis?  If it's true it's wrong.  

Families need to know and prepare.  

Services need to know and get ready.  

Government needs to know and get real.

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roy.lilley@nhsmanagers.net 

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