Category: Togetherness

The Guardian recently published an article saying “People won’t get ‘tired’ of social distancing – and it’s unscientific to suggest otherwise”. “Behavioural fatigue” the piece said, “has no basis in science”.

‘Behavioural fatigue’ became a hot topic because it was part of the UK Government’s justification for delaying the introduction of stricter public health measures. They quickly reversed this position and we’re now in the “empty streets” stage of infection control.

But it’s an important topic and is relevant to all of us as we try to maintain important behavioural changes that benefit others.

For me, one key point is that, actually, there are many relevant scientific studies that tackle this. And I have to say, I’m a little disappointed that there were some public pronouncements that ‘there is no evidence’ in the mainstream media without anyone making the effort to seek it out.

The reaction to epidemics has actually been quite well studied although it’s not clear that ‘fatigue’ is the right way of understanding any potential decline in people’s compliance. This phrase doesn’t seem to be used in the medical literature in this context and it may well have been simply a convenient, albeit confusing, metaphor for ‘decline’ used in interviews.

In fact, most studies of changes in compliance focus on the effect of changing risk perception, and it turns out that this often poorly tracks the actual risk. Below is a graph from a recent paper illustrating a widely used model of how risk perception tracks epidemics.

Notably, this model was first published in the 1990s based on data available even then. It suggests that increases in risk tend to make us over-estimate the danger, particularly for surprising events, but then as the risk objectively increases we start to get used to living in the ‘new normal’ and our perception of risk decreases, sometimes unhelpfully so.

What this doesn’t tell us is whether people’s behaviour changes over time. However, lots of studies have been done since then, including on the 2009 H1N1 flu pandemic – where a lot of this research was conducted.

To cut a long story short, many, but not all, of these studies find that people tend to reduce their use of at least some preventative measures (like hand washing, social distancing) as the epidemic increases, and this has been looked at in various ways.

When asking people to report their own behaviours, several studies found evidence for a reduction in at least some preventative measures (usually alongside evidence for good compliance with others).

This was found was found in one study in Italy, two studies in Hong Kong, and one study in Malaysia.

In Holland during the 2006 bird flu outbreak, one study did seven follow-ups and found a fluctuating pattern of compliance with prevention measures. People ramped up their prevention efforts, then their was a dip, then they increased again.

Some studies have looked for objective evidence of behaviour change and one of the most interesting looked at changes in social distancing during the 2009 outbreak in Mexico by measuring television viewing as a proxy for time spent in the home. This study found that, consistent with an increase in social distancing at the beginning of the outbreak, television viewing greatly increased, but as time went on, and the outbreak grew, television viewing dropped. To try and double-check their conclusions, they showed that television viewing predicted infection rates.

One study looked at airline passengers’ missed flights during the 2009 outbreak – given that flying with a bunch of people in an enclosed space is likely to spread flu. There was a massive spike of missed flights at the beginning of the pandemic but this quickly dropped off as the infection rate climbed, although later, missed flights did begin to track infection rates more closely.

There are also some relevant qualitative studies. These are where people are free-form interviewed and the themes of what they say are reported. These studies reported that people resist some behavioural measures during outbreaks as they increasingly start to conflict with family demands, economic pressures, and so on.

Rather than measuring people’s compliance with health behaviours, several studies looked at how epidemics change and used mathematical models to test out ideas about what could account for their course.

One well recognised finding is that epidemics often come in waves. A surge, a quieter period, a surge, a quieter period, and so on.

Several mathematical modelling studies have suggested that people’s declining compliance with preventative measures could account for this. This has been found with simulated epidemics but also when looking at real data, such as that from the 1918 flu pandemic. The 1918 epidemic was an interesting example because there was no vaccine and so behavioural changes were pretty much the only preventative measure.

And some studies showed no evidence of ‘behavioural fatigue’ at all.

One study in the Netherlands showed a stable increase in people taking preventative measures with no evidence of decline at any point.

Another study conducted in Beijing found that people tended to maintain compliance with low effort measures (ventilating rooms, catching coughs and sneezes, washing hands) and tended to increase the level of high effort measures (stockpiling, buying face masks).

This improved compliance was also seen in a study that looked at an outbreak of the mosquito-borne disease chikungunya.

This is not meant to be a complete review of these studies (do add any others below) but I’m presenting them here to show that actually, there is lots of relevant evidence about ‘behavioural fatigue’ despite the fact that mainstream articles can get published by people declaring it ‘has no basis in science’.

In fact, this topic is almost a sub-field in some disciplines. Epidemiologists have been trying to incorporate behavioural dynamics into their models. Economists have been trying to model the ‘prevalence elasticity’ of preventative behaviours as epidemics progress. Game theorists have been creating models of behaviour change in terms of individuals’ strategic decision-making.

The lessons here are two fold I think.

The first is for scientists to be cautious when taking public positions. This is particularly important in times of crisis. Most scientific fields are complex and can be opaque even to other scientists in closely related fields. Your voice has influence so please consider (and indeed research) what you say.

The second is for all of us. We are currently in the middle of a pandemic and we have been asked to take essential measures.

In past pandemics, people started to drop their life-saving behavioural changes as the risk seemed to become routine, even as the actual danger increased.

This is not inevitable, because in some places, and in some outbreaks, people managed to stick with them.

We can be like the folks who stuck with these strange new rituals, who didn’t let their guard down, and who saved the lives of countless people they never met.

There is a movement in mental health to avoid the phrase ‘commit suicide’. It is claimed that the word ‘commit’ refers to a crime and this increases the stigma for what’s often an act of desperation that deserves compassion, rather than condemnation.

The Samaritans’ media guidelines discourage using the phrase, advising: “Avoid labelling a death as someone having ‘committed suicide’. The word ‘commit’ in the context of suicide is factually incorrect because it is no longer illegal”. An article in the Australian Psychological Society’s InPsych magazine recommended against it because the word ‘commit’ signifies not only a crime but a religious sin. There are many more such claims.

However, on the surface level, claims that the word ‘commit’ necessarily indicates a crime are clearly wrong. We can ‘commit money’ or ‘commit errors’, for instance, where no crime is implied. The dictionary entry for ‘commit’ (e.g. see the definition at the OED) has entries related to ‘committing a crime’ as only a few of its many meanings.

But we can probably do a little better when considering the potentially stigmatising effects of language than simply comparing examples.

One approach is to see how the word is actually used by examining a corpus of the English language – a database of written and transcribed spoken language – and using a technique called collocation analysis that looks at which words appear together.

I’ve used the Corpus of Contemporary American English collocation analysis for the results below and you can do the analysis yourself if you want to see what it looks like.

So here are the top 30 words that follow the word ‘commit’, in order of frequency in the corpus.

Some of the words are clearly parts of phrases (‘commit ourselves…’) rather than directly referring to actions but you can see that most common two word phrase is ‘commit suicide’ by a very large margin.

If we take this example, the argument for not using ‘commit suicide’ gets a bit circular but if we look at the other named actions as a whole, they’re all crimes or potential crimes. Essentially, they’re all fairly nasty.

If you do the analysis yourself (and you’ll have to go to the website and type in the details, you can’t link directly) you’ll see that non-criminal actions don’t appear until fairly low down the list, way past the 30 listed here.

So ‘commit’ typically refers to antisocial and criminal acts. Saying ‘commit suicide’ probably brings some of that baggage with it and we’re likely to be better off moving away from it.

It’s worth saying, I’m not a fan of prohibitions on words or phrases, as it tends to silence people who have only colloquial language at their disposal to advocate for themselves.

As this probably includes most people with mental health problems, only a minority of which will be plugged into debates around language, perhaps we are better off thinking about moving language forward rather than punishing the non-conforming.

There is an old story in London, and it goes like this. Following extensive rioting, there is an impassioned debate about the state of society with some saying it shows moral decay while others claim it demonstrates the desperation of poverty.

In 1886, London hosted one of its regular retellings when thousands of unemployed people trashed London’s West End during two days of violent disturbances.

In the weeks of consternation that followed, the press stumbled on the work of wealthy ship owner Charles Booth who had begun an unprecedented project – mapping poverty across the entire city.

He started the project because he thought Henry Hyndman was bullshitting.

Hyndman, a rather too earnest social campaigner, claimed that 1 in 4 Londoners lived in poverty, a figure Booth scoffed at as a gross exaggeration.

So Booth paid for an impressive team of researchers and sent to them out to interview officials who assessed families for compulsory schooling and he created a map, initially of the East End, and eventually as far west as Hammersmith, of every house and the social state of the families within it.

Each dwelling was classified into seven gradations – from “Wealthy; upper middle and upper classes” to “Lowest class; vicious, semi-criminal”. For the first time, deprivation could be seen etched into London’s social landscape.

I suspect that the term ‘vicious’ referred to its older meaning: ‘of given to vice’- rather than cruel. But what Booth created, for the first time and in exceptional detail, was a map of social environments.

The map is amazingly detailed. Literally, a house by house mapping of the whole of London.

The results showed that Hyndman was indeed wrong, but not in the direction Booth assumed. He found 1 in 3 Londoners lived below the poverty line.

If you know a bit about the capital today, you can see how many of the deprived areas from 1886 are still some of the most deprived in 2016.

So I was fascinated when I read about a new study that allows poverty to be mapped from the air, using machine learning to analyse satellite images Nigeria, Tanzania, Uganda, Malawi, and Rwanda.

But rather than pre-defining what counts as an image of a wealthy area (swimming pools perhaps?) compared to an impoverished one (unpaved roads maybe), they trained a neural network learn its own associations between image properties and income on an initial set of training data before trying it out on new data sets.

The neural network could explain up to 75% of the variation in the local economy.

Knowing both the extent and geography of poverty is massively important. It allows a macro view of something that manifests in very local ways, mapping it to street corners, housing blocks and small settlements.

It makes the vast forces of the economy, personal.
 

Link to Booth’s poverty map.
Link to Science reporting of satellite mapping study.

I’ve got an article in The Atlantic on how paranoia and psychosis are more common in cities and why the quest to explain the ‘urban psychosis effect’ is reshaping psychiatry.

The more urban your neighbourhood, the higher the rate of diagnosed schizophrenia and you are more likely to experience what are broadly known as ‘non-affective psychosis-psychoses’ – that is, delusions, hallucinations, and paranoia not primarily caused by mood problems.

This has led to a long and ongoing debate about why this is, with some arguing that it is an effect of city-living on the mind, while others arguing the association is better explained by a complex interaction between genetic risk factors and limited life chances.

The article discusses the science behind exactly this debate, partly a judgement on the value of the city itself, and notes how it’s pushing psychiatry to re-examine how it deals with what is often euphemistically called ‘the environment’.
 

Link to ‘The Mystery of Urban Psychosis’ in The Atlantic.

BBC Radio 4 is currently running a fascinating four-part series called The Borders of Sanity on the interaction between culture and mental illness.

It’s been put together by cultural historian Christopher Harding and takes an in-depth look at four particular instances where culture and mental health interact, perhaps in seemingly curious ways if you weren’t familiar with the culture.

It includes episodes on Depression in Japan, Sweden’s Adolescents, Hearing Voices in the UK, and the one to be broadcast next week Healing in Ghana.

The only downside is it’s one of BBC Radio’s occasional programmes that they only make available as streamed audio from their website – presumably to give it an early 2000s internet feel.

However, well-worth a listen. Genuinely fascinating stuff so far.
 

Link to BBC Radio 4’s The Borders of Sanity.

Wired has an excellent article that tracks the development of police interrogation techniques from the dark days of physical violence, to the largely hand-me-down techniques depicted in classic cop shows, to a new era of interrogation developed and researched in secret.

It’s probably one of the best pieces you’ll read on interrogation psychology for, well, a very long time, because they don’t come around very often. This one is brilliantly written.

One key part tracks the influence of still-secret interrogation techniques from the US Government’s High-Value Detainee Interrogation Group or HIG as they have filtered through from the ‘war on terror’ to civilian law enforcement.

In 2010, to make good on a campaign promise that he would end the use of torture in US terror investigations, President Obama announced the formation of the High-Value Detainee Interrogation Group, a joint effort of the FBI, the CIA, and the Pentagon. In place of the waterboarding and coercion that took place at facilities like Abu Ghraib during the Bush years, the HIG was created to conduct noncoercive interrogations. Much of that work is top secret. HIG-trained interrogators, for instance, are said to have questioned would-be Times Square bomber Faisal Shahzad and convicted Boston Marathon bomber Dzhokhar Tsarnaev. The public knows nothing about how those interrogations, or the dozen or so others the HIG is said to have conducted, unfolded. Even the specific training methods the HIG employs—and that it has introduced to investigators in the Air Force, Navy, and elsewhere—have never been divulged.

At the same time, however, the HIG has become one of the most powerful funders of public research on interrogations in America.

A fascinating and compelling read.

 
Linked to Wired article on the new wave of interrogation.

It is now common for media reports to mention a ‘child mental health crisis’ with claims that anxiety and depression in children are rising to catastrophic levels. The evidence behind these claims can be a little hard to track down and when you do find it there seems little evidence for a ‘crisis’ but there are still reasons for us to be concerned.

The commonest claim is something to the effect that ‘current children show a 70% increase in rates of mental illness’ and this is usually sourced to the website of the UK child mental health charity Young Minds which states that “Among teenagers, rates of depression and anxiety have increased by 70% in the past 25 years, particularly since the mid 1980’s”

This is referenced to a pdf report by the Mental Health Foundation which references a “paper presented by Dr Lynne Friedli”, which probably means this pdf report which finally references this 2004 study by epidemiologist Stephan Collishaw.

Does this study show convincing evidence for a 70% increase in teenage mental health problems in the last 25 years? In short, no, for two important reasons.

The first is that the data is quite mixed – with both flatlines and increases at different times and in different groups – and the few statistically significant results may well be false positives because the study doesn’t control for running lots of analyses.

The second reason is because it looked at a 25-year period but only up to 1999 – so it is now 17 years out-of-date.

Lots of studies have been published since then, which we’ll look at in a minute, but these findings prompted the Nuffield Foundation to collect another phase of data in 2008 in exactly the same way as this original study, and they found that “the overall level of teenage mental health problems is no longer on the increase and may even be in decline.”

Putting both these studies together, this is typical of the sort of mixed picture that is common in these studies, making it hard to say whether there genuinely is an increase in child mental health problems or not.

This is reflected in data reported by three recent review papers on the area. Two articles focused on data from rating scales – questionnaires given to parents, teachers and occasionally children, and one paper focused on population studies that use diagnosis.

The first thing to say, is that there is no stand-out clear finding that child mental health problems are increasing in general, because the results are so mixed. It’s also worth saying that even where there is evidence of an increase, the effects are small to moderate. And because there is not a lot of data, the conclusions are quite provisional.

So is there evidence for a ‘child mental health crisis’? Probably not. Are there things to be concerned about – yes, there are.

Here’s perhaps what we can make out in terms of rough trends from the data.

It doesn’t seem there is an increase in child mental health problems for young children, that is, those below about 12. If anything, their mental health has been improving over the since the early 2000s. Here, however, the data is most scarce.

Globally, and lumping all children together, there is no convincing evidence for an increase in child mental health problems. One review of rating scale data suggests there is an increase, the other paper using the more rigorous systematic review approach suggests not – in line with the data from the review of diagnostic studies.

However, there does seem to be a trend for an increase in anxiety and depression in teenage girls. And data from the UK particularly does seem to show a mild-moderate upward trend for mental health problems in adolescents in general, in comparison to other countries where the data is much more mixed. Again, though, the data isn’t as solid as it needs to be.

This leaves open some important questions though. If we’re talking about a crisis – maybe the levels were already too high so even a drop means we’re still at ‘crisis level’. So one of the most important questions is – what would be an acceptable level of mental health problems in children?

The first answer that comes to mind is ‘zero’ and not unreasonably – but considering that some mental health problems arise from largely unavoidable life stresses, bereavements, natural disasters and accidents, it would be unrealistic to expect that no child suffered periods of disabling anxiety or depression.

This also raises the question of where we decide to make the cut-off for ’emotional problems’ or ’emotional disorders’ in comparison to ‘healthy emotions’. We need anxiety, sadness and anger but they can also become disabling. Deciding where we draw the line is key in answering questions about child mental health.

So there is no way of answering the question about ‘acceptable levels of mental health problems’ without raising the question of the appropriateness of how we define problems.

Similarly, a very common finding is huge variation between countries and cultures. Concepts, reporting, and the experience of emotions can vary greatly between different cultural groups, making it difficult to make direct comparisons across the globe.

For example, the broadly Western understanding of anxiety as a distinct psychological and emotional experience which can be understood separately from its bodily effects is not one shared by many cultures.

It’s worth saying that cultural changes occur not only between peoples but also over times. Are children more likely to report emotional distress in 2016 compared to 1974 even if they feel the same? Really, we don’t know.

All of which brings us to the question- why is there so much talk about a ‘mental health crisis’ in young people if there is no strong data that there is one?

Partly this is because the mental health of children is often a way of expressing concerns about societal changes. It’s “won’t someone think of the children” given a clinical sheen. But it is also important to realise that consultations and treatment for child mental health problems have genuinely rocketed, probably because of greater awareness and better treatment.

In the UK at least, it’s also clear that talk of a ‘child mental health crisis’ can refer to two things: concerns about rising levels of mental problems, but also concerns about the ragged state of child mental health services in Britain. There is a crisis in that more children are being referred for treatment and the underfunded services are barely keeping their head above water.

So talk of a ‘crisis in rising levels of child mental health problems’ is, on balance, an exaggeration, but we shouldn’t dismiss the trends that the data do suggest.

One of the strongest is the rise in anxiety and depression in teenage girls. We clearly have a long way to go, but the world has never been safer, more equal and more full of opportunities for our soon-to-be-women. Yet there seems to be a growing minority of girls affected by anxiety and depression.

At the very least, it should make us think about whether the society we are building is appropriately supporting the future 50% of the adult population.

The journal Neurology has a brief case study reporting an intriguing form of auditory hallucination – hearing someone speaking in the voice of the last person you spoke to.

The phenomenon is called palinacousis and it usually takes the form of hallucinating an echo or repetition of the voice you’re listening to and it’s particularly associated with problems with the temporal lobes.

This case is a little different, however.

A 70-year-old right-handed white man was brought by his wife to the emergency room due to odd behavior for 2 days… According to the patient, he could not explain why people talking to him sounded strange, speaking in different voices which he heard before. For example, he would talk to a man and would hear him as talking with the voice of the woman he previously talked to. He thought it was funny and he could not concentrate on what the other person was saying because he would be laughing…

On occasion, he complained of hearing a very low-pitched intonation in people’s voices, including his own. At other times, he would hear a cyclical pattern of sounds that transitioned from noisy to silent. His most disturbing auditory symptoms persisted for several days and presented in 2 distinct forms. At first, he described hearing his deceased mother’s voice speaking to him through other people’s speech. Later on, he mentioned that after talking to one person, he would hear a second person speaking to him in the first person’s voice. He would also sometimes hear his voice as if it was the voice of the person he just spoke to. During physical therapy, the patient reported that therapist voices would suddenly change to those of people he had heard on television, which provoked uncontrollable fits of laughter.

In this case, the gentleman didn’t have damage to his temporal lobes, but a bleed that affected his right parietal lobe, which may have led to the atypical form of this hallucination.

In a recent paper, Sam Wilkinson and I noted that palinacousis is one example of an auditory hallucination that typically isn’t experienced as if you’re being communicated to by an external, illusory agent – which are perhaps the least common as most people hear hallucinated voices that appear as if they have some social characteristics.

However, it seems as if there’s even a social version of palinacousis where the echo is of someone’s voice form transposed on to the current speaker.
 

Link to PubMed entry for case study.

A common critical refrain in mental health is that explaining mental health problems in terms of a ‘brain disorder’ strips meaning from the experience, humanity from the individual, and is potentially demeaning.

But this only holds true if you actually believe that having a brain disorder is somehow dehumanising and this constant attempt to distance people with ‘mental health problems’ from those with ‘brain disorders’ reveals an implicit and disquieting prejudice.

It’s perhaps worth noting that there are soft and hard versions of this argument.

The soft version just highlights a correlation and says that neurobiological explanations of mental health problems are associated with seeing people in less humane ways. In fact, there is good evidence for this in that biomedical explanations of mental health problems have been reliably associated with slightly to moderately more stigmatising attitudes.

This doesn’t imply that neurobiological explanations are necessarily wrong, nor suggests that they should be avoided, because fighting stigma, regardless of the source, is central to mental health. This just means we have work to do.

This work is necessary because all experience, thought and behaviour must involve the biology of the body and brain, and mental health problems are no different. Contrary to how it is sometimes portrayed, this approach doesn’t exclude social, interpersonal, life history or behavioural explanations. In fact, we can think of every type of explanation as a tool for understanding ourselves, rather than a mutually exclusive explanation of which only one must be true.

On the other hand, the strong version of this critical argument says that there is ‘no evidence’ that mental health problems are biological and that saying that someone has ‘something wrong with their brain’ is demeaning or dehumanising in some way.

For example:

“such approaches, by introducing the language of ‘disorder’, undermine a humane response by implying that these experiences indicate an underlying defect.”

“The idea of schizophrenia as a brain disorder might offer further comfort by distancing ‘normal’ from disturbing people. It may do this by placing disturbing people in a separate category and by suggesting uncommon process to account for their behaviour…”

“The fifth category… consists people suffering from conditions of definitely physical origin… where psychiatric symptoms turn out to be indications of an underlying organic disease… medical science has very little to offer most victims of head injury or dementia, since there is no known cure…”

“To be sure, these brain diseases significantly affect mental status, causing depression, psychosis, and dementia, particularly in the latter stages of the illness. But Andreasen asks us to believe that these neurological disorders are “mental illnesses” in the same way that anxiety, depression, bipolar disorder, and schizophrenia­ are mental illnesses. This kind of thinking starts us sliding down a slippery slope, blurring distinctions that must be maintained if we are to learn more about why people are anxious, depressed, have severe mood swings, and lose contact with reality.”

There are many more examples but they almost all involve, as above, making a sharp distinction between mental health difficulties and ‘biological’ disorders, presumably based on the belief that being associated with the latter would be dehumanising in some way. But who is doing the dehumanising here?

These critical approaches suggest that common mental health problems are best understood in terms of life history and meaning but those that occur alongside neurological disorders are irrelevant to these concerns.

Ironically, this line of reasoning implies that people without clearly diagnosable neurological problems can’t be reduced to their biology, but people with these difficulties clearly can be, to the point where they are excluded from any arguments about the nature of mental health.

Another common critical claim is that there is ‘no evidence’ for the causal role of biology in mental health problems but this relies on a conceptual sleight of hand.

There is indeed no evidence for consistent causal factors – conceptualised in either social, psychological or biological terms – that would explain all mental health problems of a certain type, or more narrowly, all cases of people diagnosed with say, schizophrenia or bipolar disorder.

But this does not mean that if you take any particular change conceptualised at the neurobiological level that it won’t reliably lead to mental health problems, and this is true whether you have faith in the psychiatric diagnostic categories or not.

For example, Huntingdon’s disease, dementia, 22q11.2 deletion syndrome, Parkinson’s disease, brain injury, high and chronic doses of certain drugs, certain types of epilepsy, thyroid problems, stroke and many others will all either reliably lead to mental health problems or massively raise the risk of developing them.

Critical mental health advocates typically deal with these examples by excluding them from what they consider under their umbrella of relevant concerns.

The British Psychological Society’s report Understanding Psychosis simply doesn’t discuss anyone who might have psychosis associated with brain injury, epilepsy, dementia or any other alteration to the brain as if they don’t exist – despite the fact we know these neurological changes can be a clear causal factor in developing psychotic experiences. In fact, dementia is likely to be the single biggest cause of psychosis.

In a recent critical mental health manifesto, the first statement is “Mental health problems are fundamentally social and psychological issues”.

This must ring hollow to someone who has developed, for example, psychosis in the context of 22q11.2 deletion syndrome (25% of people affected) or depression after brain injury (40% of people affected).

It’s important to note that these problems are also clearly social and psychological, but to say mental health problems are ‘fundamentally’ social and psychological, immediately excludes people who either clearly have changes to the brain that even critical mental health advocates would accept as causal, or who feel that neurobiology is also a useful way of understanding their difficulties.

All mental health problems are important. Why segregate people on the basis of their brain state?

The ‘not interested in mental health problems associated with brain changes’ approach tells us who critical mental health advocates exclude from their zone of concern: people with acquired neurological problems, people with intellectual disabilities, older adults with dementia, children with neurodevelopmental problems, and people with genetic disorders, among many others.

I’ve spent a lot of time working with people with brain injury, epilepsy, degenerative brain disorders, and related conditions.

Humanity is not defined by a normal brain scan or EEG.

Mental health problems in people with neurological diagnoses are just as personally meaningful.

Social and psychological approaches can be just as valuable.

If your approach to ‘destigmatising’ mental health problems involves an attempt to distance one set of people from another, I want no part of it.

What a more inclusive approach shows, is that there are many causal pathways to mental health problems. In some people, the causal pathway may be more weighted to problems understood in social and emotional terms – trauma, disadvantage, unhelpful coping – in others, the best understanding may more strongly involve neurobiological changes – brain pathology, drug use, rare genetic changes. For many, both are important and intertwine.

Unfortunately, much of this debate has been sidetracked by years of pharmaceutical-funded attempts to convince people with mental health difficulties that they have a ‘brain disease’ – which often feels like adding insult to injury to people who may have suffered years of abuse and exclusion.

But what’s under-appreciated is the over-simplified ‘brain disease’ framework also rarely helps people with recognisable brain changes. Their mental health difficulties reflect and incorporate their life history, hopes and emotional response to the world – as it would with any of us.

So let’s work for a more inclusive approach to mental health that accepts and supports everyone regardless of their measurable brain state, and that aims for a scientific understanding that recognises there are many pathways to mental health difficulties, and many pathways to a better future.

There’s an excellent short-film, featuring journalist Greg O’Brien, who describes the experience of Alzheimer’s disease as it affects him.

It’s both moving and brilliantly made, skilfully combining the neuroscience of Alzheimer’s with the raw experience of experiencing dementia.

I found it in this Nautilus article, also by O’Brien, who has taken the rare step of writing a book about the experience of Alzheimer’s disease before it affected his ability to write.
 

Link to short film Inside Alzheimer’s on vimeo.
Link to Nautilus article.

We are born immortal, as far as we know at the time, and slowly we learn that we are going to die. For most children, death is not fully understood until after the first decade of life – a remarkable amount of time to comprehend the most basic truth of our existence.

There are poetic ways of making sense of this difficulty: perhaps an understanding of our limited time on Earth is too difficult for the fragile infant mind to handle, maybe it’s evolution’s way of instilling us with hope; but these seductive theories tend to forget that death is more complex than we often assume.

To completely understand the significance of death, researchers – mortality psychologists if you will – have identified four primary concepts we need to grasp: universality (all living things die), irreversibility (once dead, dead forever), nonfunctionality (all functions of the body stop) and causality (what causes death).

In a recent review of studies on children’s understanding of death, medics Alan Bates and Julia Kearney describe how:

Partial understanding of universality, irreversibility, and nonfunctionality usually develops between the ages of 5 and 7 years, but a more complete understanding of death concepts, including causality, is not generally seen until around age 10. Prior to understanding nonfunctionality, children may have concrete questions such as how a dead person is going to breathe underground. Less frequently studied is the concept of personal mortality, which most children have some under standing of by age 6 with more complete understanding around age 8–11.

But this is a general guide, rather than a life plan. We know that children vary a great deal in their understanding of death and they tend to acquire these concepts at different times.

Although interesting from a developmental perspective these studies also have clear, practical implications.

Most children will know someone who dies and helping children deal with these situations often involves explaining death and dying in a way they can understand while addressing any frightening misconceptions they might have. No, your grandparent hasn’t abandoned you. Don’t worry, they won’t get lonely.

But there is a starker situation which brings the emerging ability to understand mortality into very sharp relief. Children who are themselves dying.

The understanding of death by terminally ill children has been studied by a small but dedicated research community, largely motivated by the needs of child cancer services.

One of the most remarkable studies, and perhaps, one of the most remarkable studies in the whole of palliative care, was completed by the anthropologist Myra Bluebond-Langner and was published as the book The Private Worlds of Dying Children.

Bluebond-Langner spent the mid 1970’s in an American child cancer ward and began to look at what the children knew about their own terminal prognosis, how this knowledge affected social interactions, and how social interactions were conducted to manage public awareness of this knowledge.

Her findings were nothing short of stunning: although adults, parents, and medical professionals, regularly talked in a way to deliberately obscure knowledge of the child’s forthcoming death, children often knew they were dying. But despite knowing they were dying, children often talked in a way to avoid revealing their awareness of this fact to the adults around them.

Bluebond-Langner describes how this mutual pretence allowed everyone to support each other through their typical roles and interactions despite knowing that they were redundant. Adults could ask children what they wanted for Christmas, knowing that they would never see it. Children could discuss what they wanted to be when they grew up, knowing that they would never get the chance. Those same conversations, through which compassion flows in everyday life, could continue.

This form of emotional support was built on fragile foundations, however, as it depended on actively ignoring the inevitable. When cracks sometimes appeared during social situations they had to be quickly and painfully papered over.

When children’s hospices first began to appear, one of their innovations was to provide a space where emotional support did not depend on mutual pretence.

Instead, dying can be discussed with children, alongside their families, in a way that makes sense to them. Studying what children understand about death is a way of helping this take place. It is knowledge in the service of compassion.