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Sans everything: the sorry politics of dementia care

Updated Tuesday, 9th March 2010

Dick Skellington says that none of us are doing enough to treat people with dementia well

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Last scene of all
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything
- William Shakespeare

By 2025, according to research published this month by Oxford University and the Alzheimer’s Research Trust, the total number of people diagnosed with dementia in the United Kingdom will rise above the one million mark.

Today, the report Dementia 2010 claims, 822,000 people in the United Kingdom are currently suffering from dementia. That's over 122,000 more than the estimate predicted two years ago, and over 100,000 more than the figure which informed the Select Committee on Dementia Care in the Community, a committee still sitting in the backwaters of Westminster deliberating upon the sorry state of care in the United Kingdom.

The report warned that the social and public cost of Alzheimer’s disease and related conditions was far, far higher than expected, and would further increase as our population ages in the next three decades - increasing beyond our capacity to cope.

A woman helps an older one walking outside Creative commons image Icon Rosie O'Beirne under CC-BY-NC-ND licence under Creative-Commons license

People are living longer, yes, but more people, especially those on lower incomes and without the funds to pay for care, are living longer with ill health. Many - especially those suffering from dementia - experiencing a long, lingering and painful demise; many having remortgaged or sold their home to fund inadequate care.

The Select Committee on Dementia Care in the Community Review has been guided by a standpoint paper, Living with dementia: a national dementia strategy.

The paper lists seventeen worthy objectives including:

  • improving awareness;
  • increasing the accuracy of early diagnosis;
  • providing "fit for purpose" information for carers;
  • easy access to, and improved, support and advice;
  • improved quality of care for people with dementia in general hospitals;
  • more effective care for people at home;
  • improved end-of-life experiences for dementia sufferers;
  • providing an informed and effective workforce for people with dementia;
  • more effective research into dementia;
  • "fit for purpose" care home regulation;
  • and ensuring what is called ‘living well with dementia’ in care homes is provided.

The phrase "living well with dementia" acknowledges that, for decades, people have been ‘living badly with dementia’. Many readers, like me, will have distressing painful memories of what this means. [See Catalogue Of Disaster and The NHS is Not the Only Villain]

The Select Committee is taking evidence at a time when cross-party talks on elderly care have broken down in the run up to the expected May election, an election which is bound to result in a Government which has to cut public services.

Our politicians cannot agree, even when seeking a fudge to take elderly care off the election agenda. If social care budgets are to suffer further after the election, if past form is anything to go by, the care of dementia sufferers (together with those suffering from geriatric mental ill-health conditions) will be among the first to be squeezed.

Dementia has 35 million sufferers, worldwide. There is currently no cure. Serious money is needed - billions of pounds, the kind of money that is financing military campaigns in Afghanistan and Iraq, and bailing out banks - to fund research.

Psycho-geriatrics inhabits one of medicine's twilight zones, historically neglected and underfunded. If the Government sponsored 200 psychiatric registrars a year to do an MD in Dementia, our knowledge and capacity to care would improve. To its credit the Government have just appointed a new dementia ‘tsar’ for the United Kingdom: Professor Alistair Burns, an eminent psychiatrist. Let us hope he soon gets to grip with one of the biggest failures: the provision of effective care in the community.

Education can also contribute hugely. The standpoint paper’s laudable goal to provide an informed, trained and effective workforce would be enhanced if Higher Education institutions provided Foundation Degrees in Dementia Care.

At The Open University we have the expertise to do this, but at the moment most of our limited dementia care curriculum forms but a part of one of a raft of topics taught at Levels 1, 2 and 3. The Dementia Services development centre at the University of Stirling is doing its best to begin to fill this vacuum in employment engagement.

It currently costs the economy £23bn a year to struggle to cope with dementia - over twice the cost of cancer care, and three times the cost of heart disease. More worryingly, this figure takes no account at all of the kind of improved care needed if we are to effectively care for dementia sufferers.

The £23bn we spend on dementia is far too little, and greater investment is needed to tackle the dementia demographic time bomb.

The crisis is deepening and affects NHS general service provision too. As the Alzheimer’s Society report Counting the cost: caring for people with dementia on hospital wards revealed in 2009, people aged over 65 with dementia are using up to one quarter of all hospital beds at any one time.

No wonder the standpoint paper raised the vital issue of coping with the crisis dementia caring is bringing to our general hospital provision.

As the businessman Gerry Robinson discovered last year he could not fix not fix care homes. He said the £6bn care home industry is inadequate.

Sir Gerry, whose father suffered from dementia, discovered that the care home business, worth over £6bn a year, was largely paid for by taxation, and that a great deal of the care is woefully inadequate. He found misery and despair, a culture of stagnant lounges, a lack of specialist training among staff, and a focus on keeping people alive rather than helping them to live a happy life.

Worse, he found that care homes could pass inspections based on the extent of the death rates. Sure, Home Z could have lower death rate than Home X, but at least at Home X, Sir Gerry argued, the patients enjoyed a greater quality of life before dying. Sir Gerry’s despair was total. He found a disingenuous failure to acknowledge basic truths about the relationship between care costs and quality.

The Dementia 2010 report criticisms were also profound and disturbing. Hundreds of thousands of dementia sufferers were not receiving any care whatsoever because GPs were not trained to diagnose dementia related symptoms; only one third of dementia sufferers were found to be known to the NHS; research into dementia was severely underfunded: 8 pence is spent on dementia research for every £1 on research into cancer. Relatives and unpaid carers provide 1.5 billion hours of care a year to help dementia sufferers thus saving the country £12.4bn a year. Talk about social care on the cheap.

But worse, the care workforce, especially in the private care home industry, were operating a relatively feudal system in which overseas carers were imported on low pay and long hours, and no training, to care for often desperately ill and needy people.

Two other famous ‘sirs’, Sir Terry Pratchett and Sir Michael Parkinson have courageously talked up the need for more effective nursing care, and for more research into the complex aetiology of dementia.

Since her appointment by the Government in November 2008 as a voice for older people, Joan Bakewell has championed the rights of the elderly. What we now urgently need is real nursing care, provided by real nurses, skilled in dementia care, not by young untrained auxiliaries working 12 hour shifts on low pay with little time to even share a moment of happiness with their clients.

Dementia is a condition where effective communication is vital and some care services provide carers who in many cases cannot speak English.

We also need proper investment and action. We no longer will tolerate fudges and prevarication.

After the first of Sir Gerry’s programmes, the Social Care Minister, Phil Hope, told a conference on care that his wife phoned him immediately after watching and asked: ‘And what are you going to do about it?’

In truth Gerry Robinson could not do much more than identify the tragic despair of dementia care in the UK today. Doing something about it is going to take an enormous injection of money and training, a re-evaluation of professional caring, and the recruitment and retention of compassionate and dedicated staff.

Mr Hope (or his post-election successor) and Professor Burns will have a lot on their plates; and past governments have a lot on their consciences. It is also time The Open University did more too to help fill the knowledge and research vacuum.

There comes a time when consultations by Select Committees seem no longer relevant, when the immediate needs of one individual are more important than the interests of State.

This is about John’s aunt in Hackney who is beginning to self-harm, and who is living in fear, not knowing why she feels as if she has lost her life in living "sans teeth, sans eyes, sans taste, sans everything". This is about maybe me, about maybe you.

The United Kingdom has done dementia care on the cheap for far, far too long. Now is the time to invest in all our futures.

Find out more

Can Gerry Robinson fix dementia care? official website

Gerry Robinson explains why good dementia care is important to him

One woman's journey through the dementia care system: Louise's story

Coping with dementia; caring for a loved one with dementia

What is Alzheimers Disease?





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