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.

New impetus for dementia strategy is welcome

While most of the political world is focused on Ed Miliband’s speech at the Labour Party conference today, the government has quietly made an announcement that should give renewed hope to people with dementia, their families and carers; a renewed focus for the National Dementia Strategy.

It seems a long time since the strategy was launched in February 2009 amid much fanfare and talk of how it would improve care for people with the condition. What followed that was, well, very little, it seemed. Indeed, the National Audit Office was heavily critical of the implementation of the strategy – or lack of it – back in January.

While some thought that criticism was premature – one year into a 5-year strategy – little progress seems to have been made since, hence the new government’s re-fresh of it.

The Department of Health document Quality outcomes for people with dementia: Building on the work of the National Dementia Strategy highlights 4 main priorities:

• Good-quality early diagnosis and intervention for all
• Improved quality of care in general hospitals
• Living well with dementia in care homes
• Reduced use of antipsychotic medication.

The DH adds that the improvement of community personal support services is integral to and underpins each of the 4 priorities.

I can’t argue against any of those priorities, but carers, care service professionals and campaigners have been saying this for years.

There is also talk of developing an ‘outcomes-focused approach’ to dementia. ‘Outcomes-focused’ is an increasingly used phrase in health and social care and is starting to grate – isn’t all health and social care geared to delivering an outcome? I.e. improving the life of the service user? Or is it meant to stand for ‘as opposed to target-driven approach of previous government’?

However, cynicism aside, this is a major and welcome commitment from the government. For too long dementia has not received the attention it deserves from successive governments and, as a growing number of people develop the condition, it becomes an ever more urgent priority.

This annoucement has also gone down well with organisations in the sector, with the Alzheimer’s Society, the English Community Care Association and Counsel and Care all coming out in support of this.

But we have all been here before and as the original dementia strategy shows, good words and plans are one thing, but it means nothing if it does not deliver results for service users and their families.

My worry with this is that this could happen all over again. There isn’t too much detail in the document on how this will be delivered, although this is in part because the delivery strategy will be linked into the wider reforms of the NHS and social care, which will be announced in the coming months.

So, there is much to commend the revisions to the dementia strategy, but, as ever, words and intentions are one thing, but the real indicator of success will be in the implementation of this and tangible results for service users. So I’ll reserve judgement on it until later when – or if – the results can be seen among service users.

More dementia information and support needed

It is a word that strikes terror into the hearts of many older people: dementia. So it seems surprising that there still seems to be a lack of good-quality information about the condition and how to deal with it, according to a new survey.

Data from YouGov, published to coincide with Dementia Awareness Week, reveals that in a poll of some 2,000 adults without dementia 31% would not know how to get information and support if they received a diagnosis.

At a scary time – YouGov reports that 74% of respondents would feel frightened after being told they have the condition – people need all the information and support they can get in order to get to grips with what the condition is and what it means.

Indeed, anecdotally I have heard about people receiving a dementia diagnosis but getting hardly any support from health services – the only information they found was self-researched on the internet. This may well be an isolated case – there are some very good services out there – but it illustrates the inconsistency of services across the UK.

Ruth Sutherland, acting chief executive of the Alzheimer’s Society, has called directly for things to change. “It is terrible that so many people would not how to get information and support following a diagnosis of dementia. We need better awareness and information so that a diagnosis of dementia is not such a frightening experience.”

Whether that information is through leaflets and factsheets given at diagnosis, better signposting to specialist support such as memory clinics by GPs, TV advertising campaigns about what dementia is or other means, more information could make a stressful time a little less hard to deal with.

Better information could also help to deal with some of the stigma that is still associated with the condition – 10% reported that they would feel ‘ashamed’ to have dementia – which can also hold people back from seeking support once they have been given a diagnosis.

Dementia is not a death sentence and does not stop people living active and full lives – including developing new interests – and this should be at the heart of information given to people, along with practical advice about living with the condition.

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?

Improving dementia services will take time

When the National Dementia Strategy was launched amid much fanfare last February, the government said that dementia would become a priority and services would be improved. But nearly a year on, the rhetoric hasn’t been backed up by enough action, according to the National Audit Office.

In its interim report on improving dementia services in England the NAO was heavily critical of the implementation of the strategy – or lack of it.

Amyas Morse, head of the NAO, said; “At the moment this strategy lacks the mechanisms needed to bring about large scale improvements and without these mechanisms it is unlikely that the intended and much needed transformation of services will be delivered within the strategy’s 5-year timeframe.”

However, some feel that the NAO has jumped the gun with its criticism. For instance, Martin Green, chief executive of the English Community Care Association, called the report “somewhat premature”. He believes that while there is a lot more to be done to improve services, “the development of the strategy and the achievements so far represent a significant improvement in raising the profile of dementia services and giving some clear direction for the future of care and support.”

Green does have a point; it needs to be recognised that it takes time – especially in local authorities and the NHS – for change to happen. For instance, one of the main aims of the strategy is to give basic training in dementia to every health professional that comes into contact with someone with the condition. It takes time to set a project like that up and then complete it.

It is a 5-year strategy and shouldn’t be judged too harshly yet. But nevertheless the NAO’s report should serve as a kick up the behind for government, local authorities and the NHS to ensure that they do implement measures to improve dementia services or at least start putting the mechanisms in place to do so.

This agenda is evidently not going to be forgotten about, and organisations such as the NAO won’t be afraid to criticise if they see things aren’t going as well as they should be. This should ensure that the Dementia Strategy isn’t quietly swept under the carpet by the bodies involved – possibly tempting given the swingeing public sector funding cuts coming – and do, in time, deliver the standards of services required.

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.