What they don’t tell you about dementia

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dementia, diagnosis, support

What they don’t tell you about dementia

My mum doesn’t know who I am. Sadly, I don’t mean that in an angsty way – she literally has no idea who I am. Sometimes I’m her sister. Sometimes I’m her dead mother. Once I was Shirley Bassey, which made for an interesting evening. My mum was diagnosed with dementia with Lewy bodies three years ago, when she was 64 and I was 30. She’d just retired, and we were looking forward to spending more time together.

I’d spent my 20s doing my own thing, having selfishly assumed that we’d have lots of time to get to know each other properly when I got bored of clubbing. I was wrong. Instead of visiting coffee shops, we ended up visiting the memory clinic. After months of appointments we were finally sent home with a diagnosis, an information leaflet and a six-month review booked in to see how we were getting on. I imagine it’s a bit like going home with a newborn baby, but with less support and no balloons. Having previously struggled to even take care of a houseplant, I was fairly apprehensive at the prospect of becoming a carer.

As mum’s dementia progressed I came to realise that despite all the meetings, visits and consultations you have to go through to even get to the diagnosis, nobody actually tells you about the reality of this horrendous disease. They don’t tell you how to deal with your previously gentle mother swearing at you, or that she’ll hit you around the head as you desperately coax her into the bath. Neither do they tell you what sort of nappies to buy when she becomes incontinent, let alone how you’re supposed to persuade her to wear one or stop her taking it off and stashing it in a pillow case. I thought I might be changing nappies at some point in my 30s, but I didn’t imagine it would be like this.

They don’t tell you about the hours of bureaucracy and meetings with social services that you have to trudge through, when what you desperately need is some advice and support. They don’t tell you that it takes six months for them to assess whether you’re entitled to even get on the waiting list for advice and support. They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson, and tries to talk to him. Nobody tells you how to placate the angry parents who think they’ve encountered the world’s frailest child-snatcher. I had no idea what to say to the helpful passerby who insisted on intervening because he’d mistaken her having a meltdown in the street for a geriatric kidnapping.

They don’t tell you how to deal with the crushing realisation that she’s never going to phone you again, let alone see you get married or be a grandmother to your kids. Nobody tells you how to channel the anger you feel that your fellow thirtysomethings’ lives now involve marriage, mortgages and children, and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

They don’t tell you that once she nears the final stage you’ll spend hours desperately trying to feed her a spoonful of hospital jelly even though she’s pretty much given up on eating, because you can’t just watch her starve to death. It doesn’t matter how distraught you are that she’s wasting away before your eyes, or how much it upsets you to agree to the doctor’s request for a DNR order; this disease is relentless in its cruelty.

Dementia has robbed my mum and me of the time we were supposed to have, and I’m still not sure how to feel about it when there’s nothing tangible to mourn. “Waking grief” – that’s what someone called it. When the person you knew is gone, but not gone. But it’s not. It’s a waking, sleeping, relentless cloud of despair that never quite goes away, even when you think you’re OK. But then nobody tells you how to grieve either, do they? Especially when there’s no funeral to go to, just an endless stream of pointless review meetings.

My battle with depression and the two things it taught me

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Depression, medication, stigma

My battle with depression and the two things it taught me

It’s often said that depression isn’t about feeling sad. It’s part of it, of course, but to compare the life-sapping melancholy of depression to normal sadness is like comparing a paper cut to an amputation. Sadness is a healthy part of every life. Depression progressively eats away your whole being from the inside. It’s with you when you wake up in the morning, telling you there’s nothing or anyone to get up for. It’s with you when the phone rings and you’re too frightened to answer it.

It’s with you when you look into the eyes of those you love, and your eyes prick with tears as you try, and fail, to remember how to love them. It’s with you as you search within for those now eroded things that once made you who you were: your interests, your creativity, your inquisitiveness, your humour, your warmth. And it’s with you as you wake terrified from each nightmare and pace the house, thinking frantically of how you can escape your poisoned life; escape the embrace of the demon that is eating away your mind like a slow drip of acid.

And always, the biggest stigma comes from yourself. You blame yourself for the illness that you can only dimly see.

So why was I depressed? The simple answer is that I don’t know. There was no single factor or trigger that plunged me into it. I’ve turned over many possibilities in my mind. But the best I can conclude is that depression can happen to anyone. I thought I was strong enough to resist it, but I was wrong. That attitude probably explains why I suffered such a serious episode – I resisted seeking help until it was nearly too late.

Let me take you back to 1996. I’d just begun my final year at university and had recently visited my doctor to complain of feeling low. He immediately put me on an antidepressant, and I got down to the business of getting my degree. The pills took a few weeks to work, but the effects were remarkable. Too remarkable. About six weeks in I was leaping from my bed each morning with a vigour and enthusiasm I had never experienced, at least not since early childhood. I started churning out first-class essays and my mind began to make connections with an ease that it had never done before.

The only problem was that the drug did much more. It broke down any fragile sense I had of social appropriateness. I’d frequently say ridiculous and painful things to people I had no right to say them to. So, after a few months, I decided to stop the pills. I ended them abruptly, not realising how foolish that was – and spent a week or two experiencing brain zaps and vertigo. But it was worth it. I still felt good, my mind was still productive, and I regained my sense of social niceties and appropriate behaviour.

I had hoped that was my last brush with mental health problems, but it was not to be.

On reflection, I realise I have spent over a decade dipping in and out of minor bouts of depression – each one slightly worse than the last.

Last spring I was in the grip of depression again. I couldn’t work effectively. I couldn’t earn the income I needed. I began retreating to the safety of my bed – using sleep to escape myself and my exhausted and joyless existence.

So I returned to the doctor and told her about it. It was warm, and I was wearing a cardigan. “I think we should test your thyroid,” she said. “But an antidepressant might help in the meantime.” And here I realised, for all my distaste for the stigmatisation of mental illness, that I stigmatised it in myself. I found myself hoping my thyroid was bust. Tell someone your thyroid’s not working, and they’ll understand and happily wait for you to recover. Tell them you’re depressed, and they might think you’re weak, or lazy, or making it up. I really wanted it to be my thyroid. But, of course, when the blood test came back, it wasn’t. I was depressed.

So I took the antidepressant. And it worked. To begin with. A month into the course, the poisonous cloud began to lift and I even felt my creativity and urge to write begin to return for the first time in years. Not great literature, but fun to write and enjoyed by my friends on social media. And tellingly, my wife said: “You’re becoming more like the person I first met.”

It was a turning point. The drug had given me objectivity about my illness, made me view it for what it was. This was when I realised I had been going through cycles of depression for years. It was a process of gradual erosion, almost impossible to spot while you were experiencing it. But the effects of the drug didn’t last. By September I was both deeply depressed and increasingly angry, behaving erratically and feeling endlessly paranoid.

My wife threatened to frog march me back to the doctor, so I made an appointment and was given another drug. The effects have been miraculous. Nearly two months in and I can feel the old me re-emerging. My engagement and interest is flooding back. I’m back at work and I’m producing copy my clients really love. Only eight weeks ago, the very idea that I would be sitting at home tapping out a blog post of this length on my phone would have made me grunt derisively. But that is what has happened, and I am truly grateful to all those who love and care for me for pushing me along to this stage.

And now, I need to get back to work. Depression may start for no definable reason, but it leaves a growing trail of problems in its wake. The more ill I got, the less work I could do, the more savings I spent and the larger the piles of unpaid bills became. But now I can start to tackle these things.

If you still attach stigma to people with mental illness, please remember two things. One, it could easily happen to you. And two, no one stigmatises their illness more than the people who suffer from it. Reach out to them.

You needn’t be wrong to be called delusional

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conspiracies, credibility, delusion, delusions, DSM, fixed beliefs, Martha Mitchell effect, mental health issues, paranoia, stigma

You needn’t be wrong to be called delusional

It’s not clear who forcibly sedated her in 1972. It’s not certain that she was admitted to a psychiatric ward in the following year. What’s definite though is that many people thought she was mad as she ranted about conspiracies in the White House during eccentric phone calls to the press. Questions about Martha Beall Mitchell’s sanity were encouraged by the Nixon administration, who consistently briefed against her and probably had her medicated against her will. But ultimately her claims were proven correct when the Watergate scandal broke.

Mitchell was the wife of the US attorney general and saw the planning and cover-up of the Watergate burglaries first-hand. In retrospect, her seemingly paranoid claims made sense and, in her honour, Harvard psychologist Brendan Maher named the Martha Mitchell effect after her to describe the situation where someone is incorrectly diagnosed as delusional but turns out to be right.

But, contrary to popular belief, the relationship between madness and truth is a complex one. They are made out to be strangers but often they are more like distant cousins.

This relationship has recently been acknowledged with the publication of the new version of the psychiatrists’ diagnostic manual (the DSM-5) where one of the most interesting but less noticed changes has been the redefinition of the delusion, a symptom that has long been considered the “basic characteristic of madness”.

Delusions, in the medical sense, are not simply a case of being mistaken, as the everyday use of the term suggests. They are profound and intensely held beliefs that seem barely swayed by evidence to the contrary – even to the point of believing in the bizarre. My heart has been replaced by steam. My thoughts are being stolen by satellites. The government communicates with me through birdsong.

But many delusions are not outlandishly eccentric, they are simply implausible. Consider the scenario where people believe that their neighbours are conspiring against them or that they are the subject of a film star’s secret affections. Occasionally, these beliefs turn out to be true, but this is not a reliable guide to whether someone is delusional or not. This was memorably illustrated by the psychiatrist Andrew Sims, who warned in his psychopathology textbook Symptoms in the Mind that spouses of people with delusions of infidelity may occasionally be driven to infidelity. This romantic betrayal does not suddenly cure their partner of their mental illness.

The general idea is that delusions represent a problem with how you believe – that is, a problem with forming and changing beliefs – not a problem with what you believe. In other words, simply believing something strange or unusual should not be considered a problem but having “stuck” beliefs that are completely impervious to reality suggests something is mentally awry.

On the ground, mental health professionals are often required to decide if someone’s thinking indicates a disturbance in their understanding of the world, and this is where the new DSM-5 definition of a delusion may usher in a quiet revolution in psychiatry. No longer are psychiatrists asked to decide whether the patient has “a false belief based on incorrect inference about external reality that is firmly sustained despite what almost everyone else believes and despite what constitutes incontrovertible and obvious proof or evidence to the contrary”. A wordy and unhelpful definition that has so many logical holes you could drive a herd of unicorns through it.

Instead, the new definition of delusions describes them as fixed beliefs that are unswayed by clear or reasonable contradictory evidence, which are held with great conviction and are likely to share the common themes of psychosis: paranoia, grandiosity, bodily changes and so on. The belief being false is no longer central and this step forward makes it less likely that uncomfortable claims can be dismissed as signs of madness.

And this is where the larger issue lies. As happened with Martha Mitchell, claims against authorities are often dismissed by suggesting that the person has mental health problems.

History is littered with such examples but sadly there are enough contemporary cases to illustrate the point. In a controversy currently rocking Germany, evidence of money-laundering at a big bank has become a huge scandal, not least because it was dismissed as delusional seven years ago when the accuser was diagnosed with mental illness.

Closer to home, when the NHS whistleblower Kay Sheldon reported failings in the Care Quality Commission, the first response was to suggest she had a mental health problem and to commission a psychiatric assessment.

I have no idea whether these people had mental health difficulties but it should have had little bearing on how seriously their concerns were taken. The fact that their claims could be dismissed by allusions to poor mental health is part of the unfortunate stigma that still surrounds the issue. But the stigma goes both ways, and assuming people do not have mental health difficulties because they are correct is the flip side of this.

In the years after Martha Mitchell had been dismissed as delusional, it emerged, contrary to her claims, that she was under the care of her own psychiatrists, drinking heavily and, at times, suicidal. Nixon, for his part, said Watergate would never have happened if it wasn’t for Martha. Both believed that mental illness would undermine her credibility. History, however, came down on the side of truth.

When intensive care is just too intense

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critical care, delusions, Depression, discomfort, disorientated, distress, drugs, early intervention, fears, flashbacks, hallucinations, intensive care, intrusive memories, nightmares, psychological difficulties, stress, techniques, threat, treatment

When intensive care is just too intense

I still remember the first patient I saw in intensive care. A naked man, covered by a white sheet, was plugged into banks of machines through cables that radiated from his body. His face was covered by a breathing mask, his blood connected to bags of fluids. Muted and voluntarily immobile, so as not to break the fragile web that kept him alive, his eyes tracked me as I entered the cubicle. Intensive care can be a disconcerting place.

As a treatment, it is remarkably successful. Perhaps the greatest tribute to the people who work in critical care is this simple fact: most people leave intensive care alive – despite being dangerously close to death when they arrive. Through a combination of dedication, decision-making and technology, critical care staff ensure that most people pull through. This is the result of years of careful research that has focused clinical practice on restoring the body’s functioning as quickly and efficiently as possible.

But recently there has been a dawning realisation that the impact of intensive care extends beyond the survival of the body. Dorothy Wade is based at University College Hospital in London and is one of the country’s few intensive care psychologists. She led a recent study which found that more than half of patients assessed at follow-up had marked psychological difficulties. “We learned that patients were suffering from serious depression or having frightening flashbacks and nightmares to their time in intensive care,” says Wade. “This badly affected their quality of life and also held back their physical recovery from their illness.”

In another study, recently submitted for publication, Wade interviewed patients about the hallucinations and delusions they experienced while in intensive care. One patient reported seeing puffins jumping out of the curtains firing blood from guns, another began to believe that the nurses were being paid to kill patients and zombify them. The descriptions seem faintly amusing at a distance, but both were terrifying at the time and led to distressing intrusive memories long after the patients had realised their experiences were illusory.

Many patients don’t mention these experiences while in hospital, either through fear of sounding mad, or through an inability to speak – often because of medical breathing aids, or because of fears generated by the delusions themselves. After all, who would you talk to in a zombie factory?

These experiences can be caused by the effect of serious illness on the brain, but painkilling and sedating drugs play a part and are now used only where there is no alternative. Stress also adds to the mix but is often caused inadvertently by the way intensive care wards are organised. “If you think about the sort of things used for torture,” says Hugh Montgomery, a professor of intensive care medicine at UCL, “you will experience most of them in intensive care. As a patient, you are often naked and exposed, you hear alarming noises at random times, your sleep-wake cycle is disrupted by being woken up for medical procedures through the night, you will be given drugs that could disorient you, and you will be regularly exposed to discomfort and feelings of threat.”

This has led to a recent push to reorient treatment toward reducing patient stress, and long-term psychological problems, without sacrificing life-saving efficiency. Take this simple example: a study led by consultant critical care nurse John Welch at UCL found that the pitch or tone of alarms on intensive care equipment has no relation to how urgent the situation is. Many frightening-sounding alarms are just reminders – this bag needs refilling in the next hour; don’t forget to change the filter – and are often left until more important tasks are finished. But, to the uninitiated, it might sound as if death is imminent and no one is responding.

Some stress is simply an unavoidable part of necessary medical procedures. Breathing tubes inserted through the mouth or surgically implanted through the neck are notoriously uncomfortable. And, despite the survival rates, people die in intensive care. A daunting experience if you’re a patient in the same ward.

Helping patients with their intense emotional reactions, whether they arise from hallucination, misunderstanding or medical intervention, normally happens on an ad hoc basis and for many clinicians it is a relatively new situation that hasn’t been incorporated into standard training. In many intensive care units, the approach was to sedate patients for the whole of their admission. As this practice declined, for the first time, clinicians were faced with distressed, possibly hallucinating, awake patients.

Wade is currently working with clinicians to take a more systematic approach to detecting and reducing psychological distress. “There have always been experienced or just naturally empathetic nurses and doctors in intensive care,” she says. “We’re trying to build on that natural care and compassion by teaching nurses and doctors more about the causes and nature of psychological distress… and training them with simple psychological techniques that could help to reduce immediate and long-term distress.”

For his part, Montgomery is less convinced about early intervention. He feels intensive care needs to be reorganised to reduce stress but psychological problems are best dealt with in follow-up clinics.

The best time for treatment is the subject of an ongoing debate, but for the first time studies have been funded that will answer these questions. Intensive care is being rethought and may become, at least psychologically, less intense.

Don’t worry, be happy: overcoming worry may be key to mental health

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anxiety, beliefs, benefits, cbt, distraction, excessive worry, mental health issues, problem solving, worry

Don’t worry, be happy: overcoming worry may be key to mental health

Are you weary of “new year, new you” positive thinking exercises? Tired of trying to feel Tiggerish in the cold, dark, midwinter mornings? Why not try this quick experiment to redress the balance. All you have to do is imagine that something great has happened in your life: maybe you’ve run into an old friend; perhaps you’ve been promoted at work; or you’re about to head off on holiday. Now ask yourself what could go wrong. In what awful ways could it all fall apart? What disastrous chain of events might unfold? Don’t think solutions, think problems. Open the worry floodgates and allow yourself to be swept away.

As you’re likely to discover when you attempt this depressing little exercise, with a sufficiently negative outlook even the happiest moments in life can become a source of anxiety and stress. When we worry, we become preoccupied with an aspect of our lives, desperately trying to anticipate what might go wrong and what might happen if it does. Although we might believe worry is constructive, actually all it usually does is lower our mood. And when we start worrying it can be difficult to stop.

So worry can be an immensely powerful psychological mechanism, but might it also be a defining factor in the development of mental illness? Can studying it deepen our understanding of what mental illness is, how it comes about, and how it differs from psychological health?

As you’ll know if you read about the hoo-ha following publication of the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, the number of officially recognised psychiatric disorders has mushroomed in recent years, and now stands at around three hundred. That giant total has attracted a lot of criticism – and with some justification – but in fact many of these conditions are pretty similar. It is better to think instead of three main groupings of disorders: internalising (most commonly, depression and anxiety); externalising (addiction, for instance, or anti-social behaviour problems); and psychosis (with its characteristic symptoms often bracketed under the label of schizophrenia). However, even these three broad groupings share many of their causes, which has led some researchers to speculate that underlying and unifying all mental illness may be a single cause: the so-called “p factor of psychopathology”.

At the social level, we know that poverty, isolation, and negative life events all elevate the risk of mental health problems. But when it comes to the psychological p factor, there is increasing evidence that it may be excessive worry. When worry gets out of hand, it now appears, a very wide range of mental health problems can follow in its wake.

This kind of “transdiagnostic” approach represents a major shift in the way we think about worry. Traditionally, problematic worrying has been demarcated as a specific condition: generalised anxiety disorder. And in that box it has remained. (The exception to this rule is depression, for which persistent worry about the past is a recognised symptom. But it’s not called worry: it’s called “rumination”. “Worry” is defined as anxious thinking about the future.)

Yet real life seems to show a lamentable lack of respect for systems of psychiatric classification. Rather than being a separate disorder, excessive worry has been shown to play a significant role in the development and persistence of paranoid thinking, post-traumatic stress disorder, alcohol and drug dependence and insomnia. It has also been linked to the incidence of eating disorders.

The idea that many psychological problems have excessive worry in common seems plausible. As most of us know from bitter experience, worry brings the most unlikely – and unpleasant – ideas to mind, keeps them there no matter how hard we try to shake them off, and convinces us that the events we dread really may happen.

If persistent worry is potentially so damaging to our mental health, what can be done to combat it? Interestingly, we tend to worry less as we grow older. People aged 65-85, for example, report fewer worries than those aged 16-29. But besides simply waiting for the years to pass, the evidence is strongest for an adapted form of cognitive behavioural therapy. This relatively brief, one-to-one treatment is based on a detailed model showing how problematic worry is caused, maintained and overcome. Patients are helped to notice when they’re worrying, to interrupt this habitual thinking style, and then try alternative ways of reacting to life’s problems.

So far this kind of CBT has mostly been used with people suffering from generalised anxiety disorder. A recent meta-analysis of 15 studies, for example, showed that CBT was far more effective than other therapies (or than a non-treatment control) at helping people recover from generalised anxiety disorder and stay well.

But it is now beginning to be piloted for other conditions – the Oxford Cognitive Approaches to Psychosis Group, for example, is testing its efficacy in severe paranoia.

How does CBT tackle worry? For one thing, it helps people to re-evaluate their beliefs about its benefits. Like many of us, individuals who are prone to excessive worry tend to assume that it helps them. They may believe, for instance, that worrying helps them to anticipate and solve problems; that it provides the motivation necessary to tackle those problems; or that it prepares them for the worst if a solution can’t be found. They may even feel that by worrying about an event they can prevent it occurring – despite realising that it’s pure superstition. Learning to challenge these kinds of beliefs can be a huge step forward.

CBT also teaches us to confine our worrying to a regular set period of 15 minutes or so each day. When worrying thoughts arise at other times, the trick is to save them for later and let them go. “Expressive writing” can be effective too: you describe your worries in as much detail as you can, focusing on what it feels like, and resisting the temptation to analyse what’s causing your thoughts. And don’t underestimate the power of distraction: work out when you’re most likely to worry and plan a pleasurable, absorbing activity you can do instead.

Many of CBT’s techniques for tackling worry are not rocket science: with the right guidance we can all put them into practice. By doing so we’re not merely sparing ourselves hours of futile fretting. If excessive worry is truly the p factor it seems to be, we’ll also be addressing one of the key determinants of our mental health.

At last, a promising alternative to antipsychotics for schizophrenia

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antipsychotic drugs, causes, cognitive treatment, delusion, dropout rates, hallucinations, medication, psychosis, schizophrenia, side-effects, treatment

At last, a promising alternative to antipsychotics for schizophrenia

Imagine that, after feeling unwell for a while, you visit your GP. “Ah,” says the doctor decisively, “what you need is medication X. It’s often pretty effective, though there can be side-effects. You may gain weight. Or feel drowsy. And you may develop tremors reminiscent of Parkinson’s disease.” Warily, you glance at the prescription on the doctor’s desk, but she hasn’t finished. “Some patients find that sex becomes a problem. Diabetes and heart problems are a risk. And in the long term the drug may actually shrink your brain … ”

This scenario may sound far-fetched, but it is precisely what faces people diagnosed with schizophrenia. Since the 1950s, the illness has generally been treated using antipsychotic drugs – which, as with so many medications, were discovered by chance. A French surgeon investigating treatments for surgical shock found that one of the drugs he tried – the antihistamine chlorpromazine – produced powerful psychological effects. This prompted the psychiatrist Pierre Deniker to give the drug to some of his most troubled patients. Their symptoms improved dramatically, and a major breakthrough in the treatment of psychosis seemed to have arrived.

Many other antipsychotic drugs have followed in chlorpromazine’s wake and today these medications comprise 10% of total NHS psychiatric prescriptions. They are costly items: the NHS spends more on these medications than it does for any other psychiatric drug, including antidepressants. Globally, around $14.5bn is estimated to be spent on antipsychotics each year.

Since the 1950s the strategy of all too many NHS mental health teams has been a simple one. Assuming that psychosis is primarily a biological brain problem, clinicians prescribe an antipsychotic medication and everyone does their level best to get the patient to take it, often for long periods. There can be little doubt that these drugs make a positive difference, reducing delusions and hallucinations and making relapse less likely – provided, that is, the patient takes their medication.

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Unfortunately, dropout rates are high. This is partly because individuals sometimes don’t accept that they are ill. But a major reason is the side-effects. These vary from drug to drug, but they’re common and for many people are worse than the symptoms they are designed to treat.

In addition, antipsychotics don’t work for everyone. It is estimated that six months after first being prescribed them, as many as 50% of patients are either taking the drugs haphazardly or not at all.

The conventional treatment for this most severe of psychiatric illnesses, then, is expensive, frequently unpleasant, and not always effective even for those who carry on taking the drugs. But it is what we have relied upon – which helps to explain why the results of a clinical trial, recently published in The Lancet, have generated so much interest and debate.

A team led by Professor Anthony Morrison at the University of Manchester randomly assigned a group of patients, all of whom had opted not to take antipsychotics, to treatment as usual (involving a range of non-pharmaceutical care) or to treatment as usual plus a course of cognitive therapy (CT). Drop-out rates for the cognitive therapy were low, while its efficacy in reducing the symptoms of psychosis was comparable to what medication can achieve.

So what exactly is CT for schizophrenia? At its core is the idea that the patient should be encouraged to talk about their experiences – just as they would for every other psychological condition. Psychosis isn’t viewed as a biological illness that one either has or does not have. Instead, just like every other mental disorder, psychotic experiences are seen as the severest instances of thoughts and feelings – notably delusions and hallucinations – that many of us experience from time to time.

Working together, the patient and therapist develop a model of what’s causing the experiences, and why they’re recurring. These factors will vary from person to person, so what is produced is a bespoke account of the individual’s experience, which is then used to guide treatment. For example, a person so worried by paranoid fears that they won’t set foot outside might be helped to trace the roots of their anxiety to past experiences; to gradually test out their fearful thoughts; and to learn to manage their anxiety while getting on with the activities they enjoy. An individual troubled by hearing voices will be helped to understand what’s triggering these voices, and to develop a more confident, empowering relationship with them.

These are early days. Nevertheless, most of the meta-analyses of CT’s efficacy for psychosis, when added to standard treatment, have indicated definite (albeit modest) benefits for patients, with the latest showing that CT is better than other psychological treatments for reducing delusions and hallucinations. The latest guidelines from the UK’s National Institute for Health and Care Excellence (Nice) recommend it for those at risk of psychosis and, when combined with medication, for people with an ongoing problem.

But not everyone is convinced, and although the research published in The Lancet is encouraging, it was small scale. CT for psychosis is still evolving, and we think that evolution should prioritise three key areas.

First, we must focus on understanding and treating individual psychotic experiences. As we’ve reported in a previous post, there is increasing reason to doubt the usefulness of the diagnosis “schizophrenia”. The term has been used as a catch-all for an assortment of unusual thoughts and feelings that often have no intrinsic connections, and aren’t qualitatively different from those experienced by the general population. Each psychotic experience may therefore require a tailored treatment.

Second, we must build on the recent transformation in understanding the causes of psychotic experiences, taking one factor at a time (insomnia, say, or worry), developing an intervention to change it, and then observing the effects of that intervention on an individual’s difficulties.

And finally, we must listen to what patients want from their treatment – for example, by focusing on improving levels of wellbeing, which tend to be very low among people with schizophrenia.

What about costs compared with drug treatment? A course of CBT is typically just over £1,000, but if it leads to a reduction in the amount of time patients spend in hospital and their use of other services, or a return to work, then it easily pays for itself.

The Nice guidance on psychosis and schizophrenia, updated this year, is unequivocal:

“The systematic review of economic evidence showed that provision of CBT to people with schizophrenia in the UK improved clinical outcomes at no additional cost. This finding was supported by economic modelling undertaken for this guideline, which suggested that provision of CBT might result in net cost savings to the NHS, associated with a reduction in future hospitalisation rates.”

If the real promise of cognitive therapy can be fulfilled, we may at last have a genuinely effective, relatively cheap, and side-effect-free alternative to antipsychotics for those patients who don’t wish to take them. Watch this space.

Daniel and Jason Freeman are the authors of Paranoia: the 21st Century Fear. Daniel is a professor of clinical psychology and a Medical Research Council Senior Clinical Fellow at the University of Oxford, and a Fellow of University College, Oxford. Twitter: @ProfDFreeman. Jason is a psychology writer. Twitter: @JasonFreeman100

Dispelling the nightmares of post-traumatic stress disorder

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avoidance, behaviour, cbt, distress, Ehlers and Clark, flashback, hyperarousal, interpretations, low mood, Memory, negative thoughts, nightmares, post traumatic stress disorder, psychological effects, psychotherapy, PTSD, reliving, reminders, symptoms, threat, trauma, trauma memories, traumatic event, treatment, triggers

Dispelling the nightmares of post-traumatic stress disorder

On Wednesday morning we woke to the news that a passenger ferry had sunk off the coast of South Korea, with at least four people confirmed dead and 280 unaccounted for. Meanwhile, though the search has continued for the missing Malaysia Airlines plane, relatives’ hopes of a safe landing have long since been extinguished.

Human tragedies like these are the stuff of daily news, but we rarely hear about the long-term psychological effects on survivors and the bereaved, who may experience the symptoms of post-traumatic stress disorder for years after their experience.

Although most people have heard of PTSD, few will have a clear idea of what it entails. The American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) defines a traumatic event as one in which a person “experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others”. PTSD is marked by four types of responses to the trauma. First, patients repeatedly relive the event, either in the form of nightmares or flashbacks. Second, they seek to avoid any reminder of the traumatic event. Third, they feel constantly on edge. Fourth, they are plagued with negative thoughts and low mood.

According to one estimate, almost 8% of people will develop PTSD during their lifetime. Clearly trauma (and PTSD) can strike anyone, but the risks of developing the condition are not equally distributed. Rates are higher in socially disadvantaged areas, for instance. Women may be twice as likely to develop PTSD as men. This is partly because women are at greater risk of the kinds of trauma that commonly produce PTSD (rape, for example). Nevertheless – and for unknown reasons – when exposed to the same type of trauma, women are more susceptible to PTSD than men.

What causes it? In one sense, the answer is obvious: a specific trauma. Yet this is only part of the story, because not everyone who is raped or badly beaten up develops PTSD. Of the contemporary psychological attempts to answer that question, the most influential is the one formulated by the clinical psychologists Anke Ehlers and David Clark at the University of Oxford.

They argue that PTSD develops when the person believes they are still seriously threatened by the trauma they have experienced. Why should someone assume they are still endangered by an event that happened months or even years previously? Ehlers and Clark identify two factors.

First is a negative interpretation of the trauma and the normal feelings that follow, for example believing that “nowhere is safe”, “I attract disaster”, or “I can’t cope with stress”. These interpretations can make the person feel in danger physically (the world seems unsafe), or psychologically (their self-confidence and sense of well-being feel irreparably damaged).

Second are problems with the memory of the trauma. Partly because of the way the person experiences the event, the memory somehow fails to acquire a properly developed context and meaning. As a result, it constantly intrudes. Ehlers and Clark liken the traumatic memory to “a cupboard in which many things have been thrown in quickly and in a disorganised fashion, so it is impossible to fully close the door and things fall out at unpredictable times”.

These factors change the way people behave. They may avoid situations that might spark a memory of the trauma, and will sometimes try to deaden their feelings with drink or drugs. Yet these strategies tend to entrench and exacerbate the problem.

PTSD can be treated with antidepressants or various kinds of psychotherapy, including prolonged exposure therapy and eye movement desensitisation and reprocessing. However, a recent meta-analysis of 112 studies conducted over the past 30 years found that cognitive behavioural therapy (CBT) was the single most successful type of treatment.

CBT typically comprises three main strands. First, it evaluates the individual’s excessively negative thoughts about the trauma and its aftermath – for example by helping them understand that they are not to blame or that their feelings are normal and natural. Second, the treatment works on the person’s memory of the trauma: the individual might be asked to write a detailed account of the event; relive it in their imagination; revisit the site of the trauma; or be shown how to cope with the kind of objects or situations that trigger the traumatic memory.

The final strand involves tackling the kind of behaviours that tend to fuel PTSD, for example by demonstrating that attempting to suppress a thought is futile (if you doubt it, try right now not to think of a white bear) or that avoiding a situation only strengthens one’s fear.

A course of CBT for PTSD normally involves meeting with a therapist once or twice a week over several months. Given how debilitating the problem can be, that can seem like a very long time to wait to get one’s life back on track. However, pioneering research published in last month’s issue of The American Journal of Psychiatry suggests that there may be an alternative. Instead of months, it may be possible to tackle the symptoms of PTSD in just seven days.

Anke Ehlers at the University of Oxford and her colleagues randomly assigned 121 patients with PTSD (about 60% female, 40% male) either to a seven-day course of intensive CBT; weekly sessions of CBT for three months; a type of psychotherapy known as emotion-focused supportive counselling; or to a 14-week waiting list. Participants in the first three groups all received the same amount of therapy (18 hours).

The results were striking. The intensive CBT proved almost as successful as the standard three-month course, with respective recovery rates from PTSD of 73% and 77%, and the intensive version produced its effects more quickly. For the supportive counselling group, recovery was 43% (another finding that undermines the idea that all types of psychotherapy are equally effective). Among the waiting list group, just 7% had recovered. Both courses of CBT also led to large reductions in levels of anxiety and depression.

Most importantly, the benefits lasted: 40 weeks after entering the study, about two-thirds of the CBT patients were still free from the symptoms of PTSD. The therapy isn’t easy – it confronts highly distressing events and feelings, after all – but it works.

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Why should teachers talk about mental health with students and colleagues?

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anxiety, Bullying, career, colleagues, Depression, harassment, management, mental health issues, recovery, secret, stigma, stress, support, teachers

Why should teachers talk about mental health with students and colleagues?

Clare can now talk with calm reflection about the moment she decided to end her life. She remembers feeling as if she were living in a sort of twilight zone where nothing made sense: she was being shunned by colleagues and faced losing her job as a teacher.

Things had spiralled out of control after Clare was signed off work with stress-related depression. When invited back to school to talk about when she might return, managers tried to renegotiate her contract. Clare immediately sought legal advice. “I felt isolated, bullied and harassed.

“My managers were asking other staff members about me and I was becoming increasingly anxious by what was happening. Instead of supporting me and making reasonable adjustments to the fact that I was off with stress, the school’s response was completely punitive.”

Part of the problem is that mental illness in teaching is stigmatised, says Clare. “If you reveal that you are stressed, it is seen as a great weakness – that you are just not up to the job.”

Figures published by the Association of Teachers and Lecturers (ATL) this year showed that more than a third of school and college staff have noticed a rise in mental health issues among colleagues in the past two years. Despite this, 68% kept their problems a secret from their bosses.

In a recent Teacher Support Network survey, the majority of teachers (89%) blamed excessive workloads for their mental health problems, and 40% wouldn’t talk to anyone at work about mental illness because was seen as “a sign of weakness”.

People worry about being seen as not good enough, says Tim, a teacher who retired early due to stress and anxiety. “If you are suffering from work-related stress you are especially reluctant to seek the support of senior management for fear that your complaints could be seen as an indictment of their management.”

David Ambler, ATL district secretary in Birmingham, says mental health problems are also stigmatised because of worries about how this will make a school look. “To reduce the stigmatisation of mental illness requires more than simply a change of attitude among headteachers and senior management in school. It requires a change of attitude among the general public and parents to understand that teaching is a stressful job and sometimes teachers go under or need treatment.”

When Michael was signed off with stress-related depression, he found that some colleagues were understanding but others were not. Teachers worry about the impact of admitting to a mental health problem on their career, he says. The headteacher who employed Michael in his current post said that she was taking a huge risk and put him on a six-month trial period. “Employers are not as sure about mental illness as they would be about physical illness,” he says. “If I broke my leg, for example, and came back to work I don’t think I would be trialled in the same way.”

But this needn’t be the case if the stigma around the issue of mental illness is tackled and the right support is put in place. Rachel, who has experienced depression for years but hasn’t taken time off work, puts her ability to keep teaching without taking any extensive leave down to the support of her senior leadership team and colleagues.

“I am able to talk to all my senior management team and have good friends on the staff who also know and are supportive. My experience of mental health, if anything, has done the opposite of holding me back. But if I had not received the understanding and support I did then I would almost certainly have ended up off sick and probably left teaching.”

Nor is this just an issue of doing the right thing and supporting people experiencing mental health problems – it’s also essential to their recovery. Alison Stark, a senior teacher at a Dutch secondary school, who is off sick with work-related burnout, says there is a more open culture to mental health in the Netherlands.

“The first step is admitting that you have a problem. I talked about my problems with a friend and just being able to say out loud that I am struggling helped me accept things,” she says.

Her school has been patient and supportive – rather than worrying about what to say, colleagues have sent her cards, flowers and message of support. “It is important that schools have a supportive management who are understanding. Headteachers need to support management and create an atmosphere in which teachers can talk about it [mental illness].”

For Stark, the most supportive person has been her deputy head, who has sought solutions by asking her what she needs and what would aid her recovery. “They say, ‘do you want me to allow you home access to email or not? Should I block it and protect you?’”

An openness about mental illness could also help students by ensuring they have positive role models. Kelly, who just started in a girls’ school, is recovering from an eating disorder and used to self-harm. She says stress from teaching can cause a flare-up in food-control behaviours and she has visible scars on her arm. “I am what you could call a normal weight so it’s not obvious I struggled with bulimia, anorexia and excessive exercising,” she says.

Kelly wants to share her experiences to show her pupils that no one should let mental health problems define them, but she worries about the repercussions. “I worry that my school would not be supportive of my talking about my experiences as they would be concerned about the potential backlash from parents. If students mis-reported the story at home some parents may be concerned about my capacity to cope.”

• Most of the names in this article have been changed to protect the teachers who shared their stories.

The Tackling mental health stigma in schools series is funded by Time to Change. All content is editorially independent except for pieces labelled advertisement feature. Find out more here.

Depression doesn’t make you sad all the time

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Depression, happy, myths, sad, stigma

Depression doesn’t make you sad all the time

One of the most popular, enduring, and irritating myths about depression is that it means depressed people are sad all the time – and that by extension, people who are happy can’t be experiencing depression, even if they say they are. It is a skewed and horrible version of depression, and it’s one that further stigmatises the condition and isolates people with depression and related mental health conditions. This is because, put bluntly, depression doesn’t make you sad all the time – though the level of sadness a patient experiences can of course vary depending on the individual and the severity of depression.

When I’m having a depressive episode, I’m not walking around in tattered black clothes, weeping and wailing. I go out with friends. I crack jokes (especially sardonic ones). I keep working, and have friendly chats with the people I work with. I often manage to feed and clothe myself, I read books. Above all, I experience moments of happiness: a flash of delight as I’m walking on the beach with a friend and the sun is perfect and the breeze is just right; a surge somewhere deep inside when I’m surrounded by beautiful trees and it’s raining and I feel my heart swelling to encompass the whole world; a warm, friendly, affectionate sensation at the touch of a friend, a hug at the end of an evening or a hand placed over mine as we lean forward to see something better.

Yet I feel a strange conflicting pressure. On the one hand, I feel like I need to engage in a sort of relentless performative sadness to be taken seriously, for people to understand that I really am depressed and that each day – each moment of each day – is a struggle for me, that even when I am happy, I am still fighting the monster. I feel like I need to darken everything around me, to stop communicating with the world, to stop publishing anything, to just stop. Because that way I will appear suitably, certifiably sad, and thus, depressed – and then maybe people will recognise that I’m depressed and perhaps they’ll even offer support and assistance. The jokes die in my throat, the smile never reaches my lips, I don’t share that moment of happiness on the beach by turning to my friend and expressing joy.

I don’t, in other words, do the things that can help ameliorate depression, encourage people to reach out, and help depressed people with functioning, completing daily tasks of life, and finding a reason to live again. I don’t find and build a rich community of people who can offer support (and whom I can support in turn), because I have to be so wrapped up in performing my sadness at all times to prove that I’m depressed enough – even as I want to scream that this is a reinforcement of stereotypes that hurt people, that by doing this I am hurting not just myself but others.

On the other, I feel an extreme pressure to perform just the opposite, because sad depressed people are boring and no fun, as I am continually reminded every time I speak openly about depression or express feelings of sadness and frustration. I’m caught in a trap where if I don’t perform sadness, I’m not really depressed, but if I express sadness at all to any degree, I’m annoying and boring and should stop being so self-centred. Thus I’m effectively pushed into fronting, putting a face on it even when I am depressed and deeply sad – when I feel like I am choking on my own misery, I put up a cheeky Tweet. When I hate myself and I want to die, I post a link to something fun, or I write up something silly to run somewhere – even though as I write it, I am drawn deeper and deeper into my unhappiness.

Depression is an asshole, and it can become your master, but you can slip out from under it occasionally. And many depressed people in the midst of an episode don’t actually spend it fainting dramatically on the couch and talking about how miserable they are. Some are high-functioning (bolstered by the need to put a face on it), others are into morbid jokes, others try to reach out for help (isn’t that what we’re “supposed” to do?) from friends and try to make their depression less scary. Depression isn’t an all-or-nothing deal – seeing a person who identifies with depression cracking a joke or having fun or dancing with a friend isn’t evidence that the person is faking it, whether the person is experiencing a moment of genuine happiness, or fronting. Conversely, jollying up people with depression to demand that they start being more fun is equally revolting, a refusal to acknowledge that people experiencing a rough day, or a rough week, or a rough few hours aren’t going to be your trained monkeys.

Depression manifests differently in everyone and at different times. Various behaviours are not proof positive that someone is or isn’t depressed, and, as with any armchair diagnosis, insisting that someone is not actually depressed just because of a show of something other than deep, entrenched sadness is actively harmful.

Look at the woman above, joyously cycling on a beach, hair fluttering in the breeze. You can’t judge her emotional state or her larger mental health picture, nor should you.

• This article was originally published on This Ain’t Livin’, part of theGuardian Comment Network