Should Policy Makers Tell GPs How Often to Diagnose?

I’m sure NHS England were surprised by the response to their plans to pay GPs £55 every time they diagnosed dementia. What started as a seemingly simple idea to help the Government hit their diagnosis target before the election caused such a furore that Simon Stevens declared the end of the policy before it had really begun, making it clear that it would end at the end of March.

What was striking about the reaction was not the objection among GPs – policy makers are used to that and well accustomed to ignoring it – but the strength of feeling among the public. I’m sure this is what made the difference – no politician wants to lose in the arena of public opinion. It’s not hard to see how this happened. There was something innately wrong about paying GPs to diagnose; no in-depth analysis was needed, no exploration of the evidence – it was just so clearly a bad idea and both doctors and patients were alarmed at want it meant for the doctor-patient relationship.

What continues to concern me, though, is that policy-makers still think they know best when it comes to how many patients GPs should diagnose with a variety of conditions – from heart disease to asthma, diabetes and even depression – and have an even more powerful mechanism for enforcing this, which is to put pressure on practices with low diagnosis rates through naming and shaming, and the threat of inspection. A practice may have the moral courage to resist a financial bribe, but what about if the reputation of your practice is at stake?

I have written in the British Medical Journal about this, published this week, and this is a toll-free link if you are interested. What is crucial is that at the moment of diagnosis there should be nothing in the mind of the GP other than what is best for the patient – it is fundamental to the doctor-patient relationship and something well worth shouting about.

I Lost my Mother Years Ago

‘I lost my mother years ago.’ It’s an odd thing to say about someone who is still living and breathing, but when faced with the advanced stages of dementia it can be the reality people have to live with. There is a point in the journey when communication becomes nearly impossible, the affected person stops recognising even their closest family and those who care about them really feel that the person they have loved is no longer there. Such a conclusion is understandable, but it raises all sorts of questions about the meaning of personhood in the 21st century.

The feeling of having lost someone is certainly not an uncommon experience. Ian Botham was so overwhelmed by it that he took the difficult decision to avoid visiting his father in the last 6 months of his father’s illness with dementia – fearing that his positive memories would be distorted by seeing his Dad in his final days. I can’t possibly judge Sir Ian for this decision, but I am deeply sad for him and can’t help wondering if his memories won’t be distorted anyway; our imagination has a disturbing habit of filling in the gaps in our experience.

It is interesting to me that we rarely hear someone talk of losing a relative to cancer until after their actual death. While cancer is an equally devastating illness, there is somehow something more acceptable about dying from cancer than dying from dementia – we still see the person inside the body no matter how ravaged it may be, as long as the mind is still working; in fact, even when the mind finally succumbs to cancer we seem less affected by this because it started in the body. The way Western culture places the intellect above all else must have a significant part to play here – I’m not sure the same would be true for all cultures and it would be interesting to know how dementia is treated in cultures that differ significantly in this area. Maybe stigma and fear have a large part to play also – I know that there was a time when dying from cancer was far from acceptable, when talking about cancer was taboo and a diagnosis somehow a cause of shame; this was before my time as a doctor and is so far from my experience that I can hardly imagine it, but there are echoes of the same in dementia, and I suspect these barriers will prove even harder to break down.

When have we ever heard the parents of a highly disabled child talk about losing their child while they are still alive? Through the link our practice has with a children’s hospice I talk frequently with parents whose children are no more able to communicate with their family than would a person in the late stages of dementia. There is grief and sorrow and pain for sure, but never a sense that their child is no longer a person or that only an empty shell of a body has been left alive. Of course, children are innately easy to love, but I don’t think it is a lack of love for the elderly that is at work here, or simple ageism; there seems to be something uniquely challenging about losing what we once had when it comes to our intellect.

The issue raises important questions: who am I, when I have forgotten who I am? In what way can I still be a father if I have forgotten that I have children? The cartoonist Tony Husband had to face all these questions as he watched his father die from dementia, an episode of his life that he recorded in cartoon form and which was published in full by The Daily mail. The cartoons are poignant, but not sentimental, and although the headline writers talk about dementia ‘stealing away his father’, Husband himself never describes things in this way. He simply tells the story of what happened, with both gentle humour and deep sorrow, leading to one moment right at the end of his father’s life, after any sense of meaningful communication with his Dad appeared to have gone forever, when out of the blue and in a rare moment of wakefulness, his Dad said to him: ‘Take care, son.’

Perhaps a mother can still be a mother simply because her son knows that he is her son. If our personhood is defined by whom we have loved in our lives (and there are far worse ways to ascribe meaning to our existence), then maybe it is sufficient that we are defined by those who love us, even when we have lost the capacity to show love in return. This love might even find new ways of expression: a father with dementia might be willing to hold his daughter’s hand, having previously been too inhibited to do so; a mother might come alive when the piano starts playing and sing with her children for the first time in many years; bitter memories of past wrongs may be lost alongside those memories we would rather keep, allowing the restoration of relationships as barriers are removed.

In a society that defines its members primarily on the basis of what work they do, how successful they are and how much money they earn, we should not be surprised that we lack the cultural aptitude to cope with dementia. However, if we can redefine what we mean by personhood in a way that is fully inclusive of a person with dementia, we may be more equipped to deal with this illness and perhaps all find a better way to live along the way.

The Burden of the Elderly

Baroness Warnock must have known that she was brewing up a storm when she suggested that people with dementia may have a moral ‘duty to die’ because of the burden they place on their families and the state. One wonders why she did it – not for the publicity, surely? The most compelling argument against legalised euthanasia is the concern that vulnerable elderly people will feel obliged to consider ending their own lives out of worry about being a nuisance – whatever Baroness Warnock’s motivations, it is quite chilling to see it argued in print that they would have an ethical obligation to do so.

If the criterion for ending your life is that your continued existence carries too great a price for family and state to pay for, then it is a small step to apply these principles to the young as well as the elderly. After all, the main difference between a young, severely disabled person and an elderly severely disabled person is that the younger person will require care for far longer. The argument then starts to resemble the ideology of eugenics – Europe has been there once in the last hundred years, and once is quite enough.

There is no doubt that people with advanced dementia are a burden on their families and the state – they require a lot of care and support, we would be blind to the reality of the situation to argue otherwise. The key question, though, is this: should humanity be about avoiding carrying burdens in the pursuit of individual happiness, or is our humanity both defined and enriched by the fact that we choose to carry one another’s burdens?

You only have to talk to some of those who care for a loved one with dementia to know two things: caring for someone with dementia can be tough, and many thousands of carers would tell you that it is a burden that they gladly and willingly carry for as long as it takes. We should not romanticise the role of a carer, though. For many it is too much to juggle the needs of an elderly parent with dementia with the requirement to earn a living, care for the children and still find time to eat and sleep. People need help to do this. They need a society that is willing to step up to the plate, pay its taxes and prioritise the care of the weak and vulnerable as a key measure of civilisation. We need a government that doesn’t just berate families for allowing their elderly to become isolated, but creates an environment where those of working age are more able to achieve sufficient slack in their lives to be able to care.

Ultimately it depends on whether we see the weak and the vulnerable as an annoying drain on national resources, or the very stuff that society is there for; the grit in the oyster that creates a pearl as humanity finds its purest form of expression in the care of the vulnerable; the antidote to our sanitised, celebrity-driven culture that seeks to avoid suffering at all cost, and a reminder that how we care for one another is how our society should be judged.

Screening for Dementia – Beware the Zeal of an Evangelist

There’s an old joke about a Pastor and an Evangelist going on a bear hunt. Once they have arrived at their log cabin hunting lodge the Pastor starts to unpack their supplies for the week, but the Evangelist announces that he’s going out to explore the surrounding area. Barely twenty minutes have passed before the Pastor is somewhat alarmed to see the Evangelist racing down the path back towards the cabin at breakneck speed. His alarm turns to terror when he catches sight of a large Grizzly Bear in hot pursuit.

The Pastor backs defensively into the cabin, leaving the door wide open for the Evangelist to reach safety. With relief he sees that the Evangelist is going to get there just in time, but at the last moment his friend steps deftly to one side. The Bear charges headlong into the cabin, at which point the Evangelist slams the door shut and shouts to his friend: “You deal with that one, I’ll go and get another!”

Jeremy Hunt is on a crusade to increase the rate of diagnosis of dementia, and has approached the task with all the enthusiasm, energy – and lack of forward planning – of the Evangelist. The hapless Pastor will be our dangerously over-stretched dementia services, which are already at breaking point and unable to offer the sort of service that dementia sufferers require; and the Bear will be all those people newly diagnosed through the Health Secretary’s proposals, trapped within a diagnostic label, but not able to receive the care, support and advice they need because the system will be unable to cope.

I have written an earlier post questioning who the real beneficiaries will be with the drive for early diagnosis in dementia, arguing that what we need is prompt diagnosis for those who need it, rather than an increasing search for ever milder cases. The Government, however, has announced its proposals for what they call ‘Dementia Case Finding’, which amounts to widespread screening for dementia in older people.

The proposal is that GPs should ask all at risk people – deemed to be those over 60 with certain conditions such as stroke or diabetes, and all those aged over 74 – about their memory, and offer them a screening test. This is to happen during routine visits to the doctor – which means that any older person who chooses to see their doctor about, say their arthritis or a skin rash or a blood pressure check, will be asked about their memory. There will be no advanced warning that this is going to happen, no chance to consider the potential benefits and harms of dementia screening, no leaflet in the post explaining the programme, just screening questions, and a referral to the memory clinic if you fail the test.

We need to think long and hard about the implications of this. I have three major worries.

It is a wasteful distraction from the real need in dementia care. While I have such grave concerns about the Government’s proposals, their overall focus on improving dementia care is something to be celebrated. It is long overdue, and is giving this much neglected area within medicine the drive and energy to shape change and attract investment. However, the over-riding need within dementia care is hands-on support for those who are already diagnosed and their families or carers. Currently our system can barely cope with making a diagnosis, starting people on medication and reviewing them about once a year. This is woefully inadequate. People need help understanding their diagnosis and carers need to learn a whole new way of interacting with their loved one who is now behaving in such a different way (see this post for more on that need). Issues such as Advanced Care Planning and Power of Attourney are vital, and yet people are often left to find their own way when they need someone to walk them through these emotive and complex issue. And as for non-drug therapies – such as reminiscence therapy – there is so much that could be done if only we invested in it.

There is a very real danger that older people will be put off seeing their doctor. However much we try to reduce the stigma of dementia (and try we most certainly should), it will always remain a life-changing and very frightening diagnosis. Many older people are quite threatened when I ask them about their memory – how will they feel if they hear that I will be required to do it when they come to see me? Going to the doctor can be a stressful enough experience as it is – I’m already likely to want to check their blood pressure/monitor blood tests/talk about their weight/nag them about smoking etc etc. A serious unintended consequence of this policy could well be that people will avoid seeing their doctor about other serious health issues for fear of being subjected to a memory test.

All the evidence and advice about dementia screening is clear – don’t do it. Screening for any disease is always a balance of benefits and harms, and so all NHS screening programmes are considered and evaluated by the UK National Screening Committee (UKNSC). This committee looked at dementia screening in 2010 and gave a very clear ‘No’ to the idea. The benefits of picking up the very early stages of dementia just do not outweigh the potential harms of over-diagnosis and over-treatment. The Government has neatly sidestepped the UKNSC by calling their proposal ‘Dementia Care Finding’ rather than screening, but you can call a spade a ‘garden digging implement’ if you like – it’s still a spade.

Many other doctors, and dementia campaigners share my concerns, and together some of us have written an open letter to the Prime Minister and the Chief Medical Officer, which has been published in The British Medical Journal. We have also raised an e petition asking the Government to reconsider these proposals. If you share my concerns then please consider signing the petition, and sharing it as widely as possible with others.

Thank you.

Dementia – Do Children Need a Parenting Course?

‘He just won’t listen!’

‘I’ve told her that until I’m blue in the face!’

‘He’s asked me that five times already today.’

‘You don’t remember much these days, do you Mum?’

Seeing your ageing parent slip gradually into the confusing and bewildering world of dementia can be a deeply upsetting, worrying and – often most of all – frustrating experience.  It’s as though someone has changed the rules and forgotten to tell you. Patterns of shared behaviour that have been in place for decades no longer seem to work. The parent-child dependence that you have relied on long into your adult life is gradually being reversed, and just as you adapt and make changes in how you support your Mum or Dad, so their needs change, their health takes a turn for the worse and you have to think again.

Increasingly I can see parallels with what it is like when you first become a parent. I well remember the journey home from hospital with our 2-day old daughter, thinking how surreal it was that we were to be trusted with this utterly vulnerable baby when we knew so little about what we were doing. I half expected the parenting police to turn up at any moment to check us out and demand to see our parenting qualifications before we went any further. And whenever you felt like you were getting somewhere, like you knew how to do this child-rearing thing, your child would have moved on – thoughtlessly developing before you were ready, always one step ahead of you as you ran to keep up.

To be a ‘Good-Enough’ parent (and we should never be so foolish as to think that we can be more than that) you have to learn on the job, but you do well to take as much advice, help and support as you can along the way. Learning from other parent role models, reading what you can about parenting (but not so much as to lose the joy of it!) and parenting classes are all invaluable as you experiment with what works, and what does not work, with your own child.

Adult children, and spouses, of people with dementia often feel just as de-skilled and ill-equipped to deal with the challenges it raises as any new parent – and have to face these challenges without any congratulations, bottles of champagne, cards, flowers or baby showers. Who ever heard of a ‘dementia shower’? And yet it might be both more useful and more necessary.

Do we need a ‘Parenting’ class for the children of adults with dementia? A forum where people can get support and learn to cope with how to adapt to the rule changes? They may already exist, and there are so many people out there doing good things that I suspect they do, but I am not aware of any. I am no expert on how best to look after someone with dementia – I have had no personal experience so far of having to care for someone in my own family and I am a GP, not an expert in the psychology of older people. I am aware of some things that don’t work, however, as I see them all the time.

I see family members getting frustrated that their loved one doesn’t follow a logical argument anymore. They go round in circular arguments, trying to explain why someone should take their tablets/accept care/wear different clothes, or all manner of other important, reasonable things that their Dad stubbornly refuses to listen to. Sometimes they succeed, and reach agreement, only for the decision to be completely forgotten 5 minutes later and the argument starts again, with added frustration. Sometimes people bring their relative to me, as if the authority of the doctor can persuade them – and sometimes I do, but my words prove to be no more memorable and the end result is the same.

Other times I see great sorrow in the eyes of a patient who is constantly being reminded that they forget things. They feel they are letting everyone down, and just being a nuisance, crushed as they are by the prevailing world view that the here and now is all that matters, and remembering what you had for lunch is of greater value than years of memories of a life well lived.

On rare occasions the frustration on both sides can lead to anger, and anger to aggression. Usually this is mostly verbal, but it can become physical, demonstrating how high the stakes can become in this very great challenge to our society.

I am convinced that when your relative develops dementia you need to learn how to think differently, and need as much support and advice as possible in meeting this very difficult challenge. I have some idea of what can work – things like using distraction as a way out of circular arguments; the importance of familiarity; the value of learning to think like your Mum or Dad would think, and putting into place what they would want rather than what you would want if you were them; and the positive impact of celebrating and enjoying those memories an older person still has, rather than focusing on the memories that can no longer be laid down.

I would be interested to hear of anything like a ‘Dementia Parenting Class’, but in the meantime I would like to highly recommend an inspiring, compassionate and thoughtful blog on dementia called D4Dementia, by Beth Britton. Beth has learnt her dementia lessons the hard way by caring for her father who suffered with the condition for 19 years before he died. There are good leaflets on how to care for someone with dementia (for instance on the Alzheimer’s Society website), but there is nothing quite like hearing someone’s personal story and learning from their unique successes and failures. There are inspiring posts like ‘Little Touches That Make a BIG Difference‘ that can help remind us that every patient with dementia was, is and will be a unique personality no matter how unwell they become. Other posts offer great common sense reflections such us ‘NCD, otherwise known as Dementia‘ where she reacts to the baffling declaration from the American Psychiatric Association that dementia will now be known as ‘Minor and Major Neuro-Cognitive Disorder.’

If you have any reason to need to know more about dementia (and perhaps we all do), then do check out her blog – I guarantee you will be glad that you did.

Quick Post: Which Word Best Describes the Optimal Diagnosis of Dementia?

In my post: Early Diagnosis of Dementia, Cui Bono I questioned the use of the word “Early” and how it could easily be transformed in the minds of policy makers away from getting prompt diagnosis to those who are unwell and in need, into screening the healthy for early signs of the disease.

My preferred term was to talk of ‘Prompt’ diagnosis – but is it the best word for the task? Prompt implies a lack of delay for those who need to be referred, but does it sufficiently involve the patient? There was a fascinating discussion on Twitter last night where people came up with some great alternatives – each significantly changing the emphasis on what we should be trying to achieve. I have brought the discussion together into a short Storify post which can be viewed here and is worth a quick read.

Early Diagnosis of Dementia – Cui Bono?

The Roman Senator and Lawyer Cicero famously popularised one of the most fundamental legal arguments in criminal debate: Cui Bono – ‘who benefits?’ The logic of the argument is that you will often get to the perpetrator of a crime if you start to ask yourself who it is that is its greatest beneficiary.

The Government’s National Dementia Strategy is hardly a crime – there is much to be praised and welcomed within its 102 pages – but the emphasis on early diagnosis leaves me feeling decidedly uneasy, and when I apply Cicero’s method to the situation I start to understand why this might be.

The issue I have with early diagnosis of dementia is that it is not the same as prompt diagnosis. Prompt diagnosis relates to someone with symptoms, who is seeking to know what is the cause of the problem, and where delay in reaching an understanding of their situation (ie a diagnosis) is never a good thing. That does not, however, mean that early diagnosis is always a good thing – since this also involves encouraging people with mild or no symptoms to look for early signs of the disease and to seek treatment.

In the strategy document there are compelling anecdotes about patients who have suffered with dementia for prolonged periods who have asked for medical help but had huge delays in receiving it, and the Government is right that this is unacceptable. However, whenever I hear about the dementia strategy in the news, or receive updates from our commissioning group about plans to implement it, the main emphases often seem to be on training for GPs so that we can recognise the early signs, and screening older people to test their memory. So the anecdotes tell us that diagnosis in patients who are already presenting to their GP is often not prompt enough, but the solution is to make the diagnosis more often.

So Cui Bono when it comes to early diagnosis?

The Pharmaceutical Industry: Without doubt the major beneficiaries of early diagnosis are the companies who manufacture the drugs used in the treatment of dementia. Most people with a diagnosis of dementia will end up on them, and many will stay on them for all or most of the rest of their lives. If a patient is diagnosed a year earlier then the drug company will profit from an extra year of prescriptions. If more people are diagnosed, then their client base will increase accordingly. Pharmaceutical companies need to look to their future market, and old age and dementia are reliably expanding year-on-year, so it makes sense that companies are investing heavily in this area. This is not necessarily a bad thing – I am not against businesses making a profit – but the question is, will all these extra prescriptions be to the benefit of patients?

The Politicians: A second clear set of winners from this drive for early diagnosis are the politicians. Dementia affects many of us one way or another, and causes most of us anxiety as we look to the future, and so there is high political capital to be made from seeming to be at the forefront of improving the lot of dementia care. What is more, were a high-profile politician to question the value of early diagnosis, there would be significant risk that they would be misunderstood or misquoted, and the damaging headlines accusing them of ageism would be easy to foresee. There are easy political wins to be gained here, also. There is little cost to declaring that GPs need better training, or investing in a computerised screening tool, and this allows our political leaders to sidestep the real issues of under-investment in nursing and social care for older people.

The Experts: While I have every respect for my specialist colleagues in the field of dementia care, I am concerned that we are overly reliant on the opinions and enthusiasm of experts in the developement of medical strategies and guidelines. The field of old age psychiatry has been much neglected by the medical profession over the years, and now that there are treatments for dementia it is finally coming of age and gaining the attention it deserves. It would take a bold consultant psychiatrist indeed to publicly question the wisdom of early diagnosis – it really would be biting off the hand that feeds. While it would be foolish to develop a strategy without receiving input from clinical experts, we must be more willing to question their objectivity and critically appraise their judgements.

The Patients: Ultimately, this is all to the good if everything is to the benefit of patients, but herein lies my problem – I am yet to be convinced that early diagnosis (as opposed to prompt diagnosis) is of any benefit at all. The medications which are prescribed do not alter the course of the disease. They effectively turn the clock back an average of six months, and it makes no difference whether we make this adjustment now or in two years time – the end position will be the same.

There are two main reasons why I might not pursue a referral in a patient who was possible early signs of dementia. The first, and most important, is resistance from the patient – and who can blame them. Attaching a diagnostic label turns a person into a patient, and often this comes with significant personal cost; we should only recommend this when the benefits clearly out-weigh this cost. While we must keep trying to reduce the stigma associated with dementia, we have to acknowledge that for many it remains a frightening and distressing diagnosis and should not attach it lightly.

I would not stand in the way of a referral for dementia, but the second reason why I lack enthusiasm for it is that the service currently available to me is just not good enough. It is woefully underfunded and the worthy people involved in dementia care are spread far too thinly. There is insufficient support available from dementia specialist nurses, little family support and education and inadequate social care. As a consequence a referral is often reduced to an infrequent clinic review and a decision about medication.

Of course, if we swamp the system with a swathe of new patients this might improve the service in time, as resources would have to be poured in to resolve the inevitable crisis. Crisis management, however, is one thing that is never to the benefit of patients.