End of the chemical cosh long overdue

Finally. Here is a government announcement that is years overdue: the use of anti-psychotic drugs for people with dementia must be cut by two-thirds by November 2011.

After many years of campaigning by carers, patient groups and some in the medical profession, the government has finally taken action – something the previous administration should have done years ago.

Prescribing anti-psychotic drugs to people with dementia who have behavioural problems – also known as the ‘chemical cosh’ – has long been a scandal with health and social care. Newspapers have regularly carried stories on loved parents who have been turned into “zombies” by these drugs, usually administered against the family’s wishes.

What is more surprising to me is that evidence of the harmful effects that these drugs can have on people with dementia – including shortening their lifespan – has been available for some years, yet the practice continued unabated. The simple fact that they are not licensed for long-term use by people with dementia should give a clue here – if they had benefits for the majority of people, then surely there would be recommendations to prescribe them. Seems blindingly obvious, you would think.

While anti-psychotics do benefit a minority of dementia patients – hence why there is not a complete ban – they are often prescribed for their sedative effects on people with dementia with challenging behaviour.

This is where the biggest change needs to come; in the culture of dementia care. There is still an over-reliance on drugs – from GPs and care staff – and this has to be challenged, and this directive will give much-needed focus to it.

But it is no good just cutting out anti-psychotic drug use. What also needs to happen is an increase in training for carers, care home staff etc in dementia and its effects, and in non-drug related treatments and therapies, such as reminiscence therapy, that can help people with dementia.

I know of several dementia care homes that pride themselves on being ‘drug-free’ (within reason) and there is no reason why this shouldn’t be an industry standard. As usual, best practice is out there and it needs to be disseminated better. Good practice needs to be shouted from the rooftops and demonstrated at seminars, conferences and in magazine articles and journals.

Finally, a bit of credit where credit is due: Paul Burstow has made good on the commitment he made while in opposition to tackle the anti-psychotics issue.

Indeed, while the government has come in for heavy criticism for its social care policies and proposals in recent weeks, this is one policy they should be congratulated on. Now it is up to GPs, care home staff and carers to make good on this.

True cost of dementia revealed

If there is one way to make government, and those that hold the purse strings, sit up and take notice of something, it is to put it in financial terms. Especially if the numbers involved are big ones.

So, a figure of £23 billion – the cost of dementia annually in the UK – is bound to have piqued the interest.

This is one of the findings of the Dementia 2010  report from the Alzheimer’s Research Trust, which also reveals that there are 820,000 people in the UK with dementia – a rise of 120,000 on the previously accepted figure.

Usually when these ‘so-and-so costs the UK x each year’ statistics crop up, I take them with a pinch of salt; rarely do you get told how they arrived at their figure, and sometimes you get the feeling they have made it up for dramatic effect.

But in this case, the University of Oxford, which carried out the research, show their working out; adding up the costs of healthcare, social care, unpaid carers and productivity losses, and arriving at a grand total of £27,647 for each person with dementia.

So, with such costs, you would think that research into finding a cure for/preventing dementia would be well funded. Wrong. Dementia research receives £50 million per year, a fraction of the £600 million spent on cancer research, for example, and a drop in the ocean compared to its cost to the economy.

Rebecca Wood, chief executive of the Alzheimer’s Research Trust, has called dementia “the greatest medical challenge of the 21st century.” While that may be slightly hyperbolic, with the number of people with the condition estimated to hit 1 million in the next 15 years, it is certainly an increasing challenge that needs to be tackled.

In financial terms, increasing the research budget is a no-brainer. Even if researchers were to find a drug that just delays or slows the onset – more effectively than those already available – it would save billions.

It is a pretty convincing argument, and one the government should listen to and deliver on. In today’s financial climate, can they afford not to?

Continuing care still a grey area

New Year; same old social care news stories. This one from the Daily Mail  tells the story of Phyllis Knight, a lady so badly affected by Alzheimer’s disease that she spent 4 days living with the dead body of her husband before neighbours discovered what had happened, yet has been turned down for NHS Continuing Care funding, which would ensure she gets her care home fees paid for.

Her local PCT decided that Phyllis’ needs are social care related, rather than health care, which means that the local authority assess her eligibility for services. And because Phyllis has assets of more than £23,500, she doesn’t get any state help.

It is a story that has been told many times before and sadly, dementia represents a big grey area in health and social care; the crux is whether people with dementia primarily have social care needs – such as help dressing, washing or cooking – or health care needs, like nursing care.

And it can be tricky to decide this, as people from the NHS have admitted to me. With a physical disability, it can be easier to tell what needs someone has on a day-to-day basis because their condition is (relatively) stable, but someone with dementia often has needs that can vary markedly, depending on what sort of day they are having.

Indeed, in the earlier stages of dementia, it may be social care that the person needs, and only as the condition advances, they need nursing care.

Making a decision to award continuing care or not is also difficult because it is down to a human judgement. No matter how clearly the guidelines are framed, no 2 judgements can be the same.

This issue may get addressed when (if?) the government reforms adult care funding – a White Paper is awaited with baited breath after the consultation closed late last year – with some talk of some health and social care monies being merged together. But this is only conjecture. 

But what won’t happen is the government paying for the care of all people with dementia. With about 700,000 estimated to have some form of dementia in the UK, that bill would be too much for the NHS to take.

So, for the time being, again, the newspapers will have an easy story to file every few months when the next disgruntled family decide to go to the media to complain.