Intermittent connections in the world of dementia and care

There is what is known as a ‘major Service Outage’ in my part of the UK, and many of us are struggling with creepingly slow broadband connections – all are up the creek without a paddle for the foreseeable future, and no amount of troubleshooting has so far been able to sort us all out.  I’m told I have an intermittent connection, but no boffin has so far been able to create the constant connection that I need.  And as those strangely disconnected moments turned into hours, then days and now weeks, we have all been driven to distraction.  So, many micro filters have been changed, routers powered down and powered up, settings have all been checked, lines tested … and so on.  The systems have all had a thorough MOT.

But the brain behind the broadband can’t send the right signals to the right place at the right time for a meaningful, reliable and constant connection to be established.

Just like dementia.

When the brain’s working properly all those little electrical impulses work their way along the nerves to and from parts of your body and parts of your brain.  The neurotransmitters help those signals to jump across the gaps between the nerve cells.  And language, movement, problem solving and memory all work according to plan, according to the blueprint.  The connections remain constant.

But, with Alzheimer’s disease, the brain shrinks as the number of nerve cells in the brain reduces.  You can’t grow new nerve cells, so as more and more cells die away, the problems of dementia increase.  The neurotransmitters are reduced too so they can’t send the same signals.  The intermittent connections begin to surface.

The brain needs a good supply of blood – via blood vessels – for it to function, but if the vascular system in the brain becomes damaged, because of diabetes, high blood pressure or heart problems perhaps, or a stroke, the blood can’t reach the brain cells, so they eventually die.  And then along comes Vascular Dementia to wreak havoc.  More intermittent connections surface.

It’s 100 years since Alois Alzheimer first described Alzheimer’s.  Very little of Alzheimer’s teachings had to be revised and, though 100 years older today, they have not been corrected or amended but only confirmed.  Alois Alzheimer was apparently an optimist.

Dementia is the word we use to describe the symptoms that occur when the brain is damaged by disease, the most common being Alzheimer’s Disease.  Vascular Dementia is the second most common form of dementia.

Dementia is degenerative, and the speed of decline varies. A person will become repetitive both in speech and movement, will look in a mirror and fail to recognise their own image, will also fail to recognise their own family and friends, will lose the ability to carry out everyday tasks (the so-called activities of daily living or ADLs), will often become verbally and/or physically aggressive, will become agitated, may suffer hallucinations and delusions, will gradually suffer severe memory loss, will often lose their speech entirely and in the latter stages they will lose the ability to swallow, the ability to move, the ability to breathe.

Dementia leads to death.  There is no cure.

For some unexplained reason, Dementia is  seen at present as a problem requiring social care rather than health care.  And that is where the intermittent connections in the world of dementia and care really begin to show themselves.

Paul Burstow, Care Services Minister and Liberal Democrat MP, had a crack at local authorities for jumping the gun and making cuts in care support ahead of next month’s public spending review.  He also told Community Care that “Every local authority has a responsibility to do its best to make efficiencies and protect the frontline – there are better ways they can do this than salami-slicing and slash and burn.”    I can only agree with him when it comes to salami-slicing – if only because I can think of a few salamis that I’d like to slice, all currently involved in the care industry and in the dementia care industry.

Mr Burstow is also upset by the low uptake of personal budgets.

The Princess Royal Trust for Carers published the results of its survey of 800 carers, who care unpaid for a sick and disabled family member, and found that over half (53%) of all carers who work earn less than £10,000 a year, with three-fifths (60%) having to spend all of their savings to support the person they care for. 89% say that they are financially worse off as a result of caring and, consequently, almost two-fifths (39%) fear they will lose their home.  Broke and broken: Carers battle poverty and depression.

Read these Quotes from Carers – the intermittent connections in the world of care are clear to see.

Today, Stephen Dorrell – the new Chairman of the House of Commons health committee – has urged politicians to face up to the way in which vulnerable elderly people are being forced to pay for medical care, health care, all because of the redrawing of the boundaries between health care and social care, without proper debate or scrutiny.

The debate surrounding NHS Continuing Healthcare – which is healthcare fully funded by the NHS, in any ‘setting’ so in hospital, in a care home, in one’s own home, in a caravan or even on a double-decker bus (privately owned, of course!) – is something that most people never need to come into close contact with, unless and until they or their relatives are old, and/or with health needs.  And especially, unless and until they develop dementia.  Then, for some strange reason, the connections of the professionals suddenly resemble our broadband problems: fully funded, but fully intermittent.

Many people are denied the human right to return from hospital to their home, by healthcare professionals and by social services.  They’re told they need ‘nursing care’ 24/7 in a care home.  They are then offered by the NHS £100 towards the cost of that nursing care, the Nursing Care Contribution.  But they are then also forced to pay £3500 per month or more for residential care, often shabby and sordid residential care.

All because they have health needs that are such that they can no longer live an independent life.  Residential care is the choice of last resort for so many people, because they can no longer be cared for at home.  And that applies especially to those with dementia.

They are often forced to sell their own homes – or rather their family is forced to sell the home, because by this time, the person needing 24/7 care is in no position to do so themselves – to pay the extraordinary costs of residential care.  Extraordinary costs, because nobody is ever given a breakdown of that cost, but it’s not normally a fair charge.  The quality of care provided is rubbish in many care homes, with enormously inflated charges, enormously inflated pre-admission promises of care, enormously low-paid workers, mostly immigrant workers, enormously low standards of training, especially dementia training.  But enormous profits for the care home industry.  (see the CQC announcement today today about some of the sordid care homes and agencies it has forced to close.  Many  other sordid care homes and agencies have survived the CQC axe – but only just, and only thanks to some very closely woven and constant connections.  There’s little chance of their connections becoming intermittent.)

The hoops and hurdles that have to be faced by those who challenge the decision-making process (also known as the National Framework for NHS Continuing Healthcare) are so complex and complicated that the so-called professionals can’t even work their way through them all.  And then the family members who find the inner strength to challenge it all are forced to spend years, and years and years being humiliated by the Primary Care Trust (PCT) and Social Services (SS).  It comes to resemble a game without rules, like Snakes & Ladders with venom-filled snakes hissing and spitting at the poor souls who try to climb the rungless ladders.

Except that there are rules.  There are legally binding rules that should not be broken.  But they are being wilfully broken, by the NHS, the PCTs, and the SS.  Aided and abetted by governments, one after the other.  They are all in it together, to paraphrase David Cameron.

“We are clear about what we must do … in a way that protects the poorest and the most vulnerable in our society, in a way that unites our country rather than divides it, and in a way that demonstrates that we are all in this together. Prime Minister David Cameron’s speech on the economy, Milton Keynes, 7 June 2010,

Dementia is an extraordinary disorder of the brain, a disease of the brain, a most devastating illness, for which there is no cure.  People die of and with dementia.  But dementia is not being acknowledged as a disease, an illness, a destructive force, removing from a previously capable and competent human being each and every single quality that defines a human being.

We as a civilised country ought by now to have found a way to create the constant, reliable connection between needs and service provision.  Dementia care still suffers from a ‘major service outage’ of a kind that paralyses those with dementia and their family members caring for and about them.

I am sick and tired of reading, hearing and watching our government, our ministers, our politicians, our healthcare professionals, our social care professionals and so on, all cry out in shock horror about the problems of caring for the elderly that we are facing, but they continue to do nothing to correct the ills of their ill-defined system.  Actions speak louder than words.  If we really are all in this together, then we should not be so lily-livered about sharing the responsibility for it together, via taxation.   All that is required is for the connection to be made, between health needs and care.  Between dementia and care.

After all, tomorrow it could be any one of us – even you – with dementia and needing care.

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Filed under abuse, Alzheimer's, care, care fees, care homes, dementia, dementia care, law, liability, Local Authority, NHS, NHS Continuing Healthcare, politics, professional responsibility, social work

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