The failure of post-diagnosis support

It’s not often that the content of TV programmes stays with me, but the recent BBC ‘Hospital’ series, following the fortunes of patients and staff at Imperial Trust’s hospitals in London, and ‘Granddad, dementia and me’ that I wrote about last month, both fall into that category.

Documentaries can teach us a lot, and even allowing for the selective nature of TV editing and the luxury of being a passive viewer rather than a stressed subject with a camera pointing at you, I feel it’s important that the learning from these two programmes isn’t lost.

The third episode of ‘Hospital’ featured two gentlemen living with dementia. Firstly we were introduced to Carl:

Narrator: “75-year-old Carl has dementia. His family brought him to A&E after he became aggressive at home. Yesterday morning he walked out of the hospital and was missing for 13 hours. The police found him wandering the streets alone and brought him back to A&E.”

Dr Barbara Cleaver, Emergency Medicine Consultant: “Three people to look after him at the moment including security because he is in an unfamiliar environment, it’s noisy, it’s bright, there’s lots going on. I suspect that’s really playing into his underlying diagnosis and making things much worse for him.”

Narrator: “For his own safety, Carl is being held in room Q, the space reserved for psychiatric patients.”

My alternative commentary would be:

“Carl, a gentleman living with dementia, was missing his wife who for her own health needed a break from 24/7 unsupported caring. Carl, confused and frustrated that he couldn’t find his wife, lashed out at those around him through no fault of his own, and without the skills and support they needed, family members took Carl to a place they thought he would be safe. Carl, however, became disorientated in this alien environment and went to look for his wife for reassurance and familiarity.”

Later, we were introduced to Stanley:

Narrator: “85-year-old Stanley has vascular dementia. This is his 4th admission in three months. Around 25% medical patients treated annually by the Trust have dementia. They are accommodated in a specialist ward until their social care can be arranged.”

My alternative commentary would be:

“Stanley, poorly supported in the community, has had repeated inpatient stays. At present Stanley does not require acute medical treatment, and would undoubtedly have lived far better with his dementia had his family and social care been properly resourced to support Stanley from his diagnosis onwards.”

Were Carl and Stanley featured because their stories are somehow usual? Sadly I suspect quite the opposite. Carl and Stanley are the norm. The failure in post-diagnosis support for people living with dementia and their families is something I have written about countless times. Not only is it a disgrace that families end up in the situations faced by Carl and Stanley, it is also a complete false economy.

My dad was diagnosed 14 years ago. Since then we’ve had numerous dementia-related initiatives from different governments and significant investment into dementia education for healthcare professionals via Health Education England. And yet we still have:

·       People attending A&E because it’s the only place guaranteed to ‘do’ something for them when their family can’t cope with ‘aggression’ or the person has been found ‘wandering’ (not my choice of language)

·       People with dementia being placed in rooms intended for psychiatric patients (that are not remotely dementia friendly)

·       Medical and security staff seemingly untrained in supporting a person with dementia (and loads of stigmatizing language)

·       People remaining stuck in hospital because care packages are so difficult to arrange

·       Family carers at their wits end, wanting to care for their loved one but utterly unsupported

·       No signs of dementia friendly environments (in people's own homes or health/social care facilities)

 

·       No mention of some of the good work that has been done to help people in hospital, like 'This is me' and John's Campaign.

Add in what we saw in ‘Granddad, dementia and me’ where the gentleman featured who was living with dementia, Tom, was drugged and sectioned, and overall in both programmes precious little sign of any choice, control, empowerment, peer support, occupation or activity, life story work and other non-pharmacological treatments, positive behaviour support or, frankly, anything I would be proud of (beyond the outcome shown in Tom story) and I honestly question how much REAL progress has been made in the last 14 years.

By the time a person attends A&E, there have potentially been numerous red-flags that the family needed support. A dementia diagnosis in itself is the first of these. Once things get so out of control that the person is in hospital (which is one of the worst possible environments for a person with dementia - it will only increase the person's confusion and disorientation making them upset and/or angry), the effect on everyone involved isn’t favourable.

Some simple preventative advice and support could at best avoid, or at least significantly delay, a person ever ending up in a crisis situation. Why do we not educate families, at diagnosis and continually thereafter, about (in no particular order):

·       Making their home dementia friendly

·       Accessing peer support and empowerment

·       Occupation and activity - The myriad of different options to keep busy and how to access them

·       Collating and using life stories and other non-pharmacological therapies to support a person experiencing changed behaviour

·       Training: For the person with dementia and anyone in the family unit who wants it. Knowledge is power for many people. Knowing what is happening in the person’s brain, how those changes could affect the person and ways of providing optimal care and support (including self-care for the person with dementia)

·        Carer resilience - Ways of coping, identifying when you aren’t coping and sources of support when you aren’t coping (that actually exist and respond)

Instead, as episode three of ‘Hospital’ concluded, we learnt that Carl was now being cared for in an acute mental health unit and visited daily by his wife, and Stanley was settling in well to his care home. Would either of these gentlemen have chosen these two places of residence? I doubt it. And from the perspective of the tax payer, both are very expensive options (Stanley’s care home costs £1700 a week, plus because of his ‘complex needs’, an additional £2300 for one-to-one care. It is funded by NHS Continuing Healthcare. We never learn what Carl’s acute mental health bed costs).

Worst of all though, is the cost in personal anguish for these two gentleman and their families. We’ve only very briefly dipped into their stories, but they represent examples being replicated every day of how a diagnosis of dementia can needlessly lead to lives unravelling, all for the want of a holistic, long-term package of what is comparatively low-level post-diagnosis support.

 

Ask yourself: For a country aiming to be the best place in the world for people with dementia to live, is that the best we can do?

Until next time...

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Reframing the reporting about violent older people in hospitals

Recently the BBC ran a story that over 75's are responsible for 57% of physical assaults on NHS staff in hospitals. These assaults range from biting and pinching through to some of the most serious attacks that are recorded. In trying to explain why these incidents are happening, the stress and confusion that a hospital stay can cause were highlighted, and patients who are living with the effects of dementia were inevitably mentioned.

Sadly, I think many people reading the headline and acknowledging that dementia is mentioned will, yet again, assume that all people with dementia are violent. Little consideration will be given to how hospital environments contributed to the circumstances around these incidents, or indeed how the lack of comprehensive staff training or appropriate staffing numbers did likewise.

What also won't be examined is how many people were avoidably in hospital in the first place, or who had remained there for far too long when not clinically necessary because of failings in the availability, organisation or funding of social care places. It's just quick and simple to look at older people and say: "They are violent because they have dementia and are attacking the people trying to care for them."

What has to be understood is that people with all different dispositions and from all walks of life develop dementia. If you were an unpleasant person with a quick temper and a tendency to be violent prior to developing dementia, your dementia may or may not make those character traits more pronounced.

Likewise, for some people who were mild-mannered and never hurt anyone, the development of dementia can lead to symptoms such as paranoia, hallucinations, disorientation, confusion and anxiety that can result in a person lashing out without realising they are or without intending to. It is simply their reaction to what they are experiencing in that moment, allied with the circumstances (environment, staffing etc) that they are in the midst of.

Delirium and other mental health problems that either haven't been diagnosed or aren't being well treated can also contribute, not to mention the side-effects of a medication, poly-pharmacy or indeed something as simple as a urinary tract infection, being hungry or tired - do not underestimate the effect of sleep deprivation. A person may also feel angry, ashamed or undignified if they aren't being supported to wash, use the toilet or be mobile in the way they would want to be, resulting in feeling uncomfortable or becoming incontinent or immobile.

I am not in any way making excuses for violence against NHS staff, nor would I ever condone it, but before we brand older people as violent patients I think we need to understand how being a hospital patient can make you feel.

Last year I spent one night in hospital following the birth of our daughter. All the care I received was wonderful and the staff were very kind and helpful to me. But I didn't sleep a wink. Nor did I particularly like the food. I definitely wanted to lock the bathroom door when I went for a shower, and ideally would have preferred to keep the curtains around my bed closed, but because we all had to be in view of the staff so we could be monitored, that wasn't possible except for breastfeeding or getting dressed.

Granted, I had just had a baby and hormones were going wild, but fundamentally I was a knowledgeable, articulate person who could speak up for myself and wasn't in danger of having to stay in hospital any longer than was absolutely necessary. Yet I felt vulnerable. And if I can feel vulnerable, then I can only imagine how an older person, potentially with reduced communication abilities due to their health, might feel.

I have written before about how undiagnosed pain in a person with dementia can affect that person. I've also written about unmet needs being misunderstood as 'challenging behaviour' (a phrase I hate), and about the effects of illness, incontinence, hunger, dehydration and sleep problems. I've also addressed the shortcomings in hospital environments for older people in comparison to the environments we offer children.

All of these issues can easily converge and result in avoidable incidents. Aggression is so strongly linked to dementia that I meet people who are surprised if their loved one isn't aggressive. Yet there is so much that can be done through person-centred care, occupation, reablement/rehabilitative support and life-story work to support people with dementia to cope with their symptoms.

Whilst the BBC based their story on firm evidence, with figures obtained from NHS Protect (the organisation dealing with crime across the health service), I suspect that many people simply won't see beyond the statistics and examine the real issues, let alone tackle them. As a result fear of having contact with older people and people who have dementia proliferates. With such ostracisation comes isolation, and an even greater chance of people who are already feeling misunderstood reacting to that in ways that hurt them every bit as much as those trying to provide care and support for them.

Understanding about dementia has improved over the years, but it isn't where it needs to be to provide appropriate, individualised support for every person. Geriatrics isn't an area of medicine that is oversubscribed with our brightest and best professionals in the way paediatrics might be considered to be, and ageing within our society still isn't universally viewed with dignity, respect or compassion. Often older people's services are underfunded, stretched to capacity (and beyond) and seen as little more than a 'dumping ground' for people viewed as adult babies and stripped of their identity.

We are long overdue a complete re-evaluation of how we care for older people in hospital, including the need to even be in hospital to begin with, and an honest stock-take on how circumstances (many of which we can control) result in incidents that are then beyond anyone's control, least of all the patients at the centre of them. As in all areas of healthcare, prevention is always better than cure.

Until next time...

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Sectioning people with dementia

Over the four years I’ve been writing this blog, I've met or been contacted by many families whose loved ones with dementia have been sectioned (detained in hospital without consent under the Mental Health Act). Sometimes the sectioning has occurred prior to a diagnosis of dementia, with the person then being diagnosed during their period of detention in a secure mental health hospital, and sometimes the sectioning has happened after a diagnosis and while they are living with a form of dementia.

Fortunately my father was never sectioned, which is just as well since I am opposed to it in relation to people with dementia in all but the most extreme circumstances. When I say extreme circumstances I'm talking about where a person with dementia is violently unwell and every effort has been made, prior to sectioning, to utilise every other avenue of care and support available.

As we know, people from all walks of life develop dementia, including people with long-term mental health disorders like schizophrenia and bipolar (manic-depression). The addition of a form of dementia for a person with a mental health disorder may result in a particular set of circumstances that makes sectioning necessary.

Equally, we know that dementia can itself cause significant changes in a person's personality, when they have no previous history of mental health illness. If those changes result in a person taking up a dangerous weapon and threatening themselves or others, again sectioning may be the only option.

These are, by any stretch of the imagination, extreme circumstances. They also affect a very, very small proportion of people with dementia. Yet figures published by the Health and Social Care Information Centre on 23rd October 2015, for the year 2014/15, showed that people aged 60 to 89 were most likely to be detained (Sectioned) under the Mental Health Act, with the number of detentions in each of these age groups (60-69, 70-79, 80-89 and 90 or over) all being over 43.0 per 100 people who spent time in hospital.

It would be a reasonable assumption, given that diagnosis of dementia is highest amongst older people, to suggest that dementia was a factor in many of these detentions. The question is, however, was sectioning the best form of care for these individuals? Most people with dementia live with progressive symptoms that cause them various challenges, and which the people around them need to respond to in ways that help to alleviate any distress they are feeling.

Sectioning is not a method of care that is likely to succeed in alleviating distress for the average person, or indeed for anyone bar those experiencing the most extreme symptoms and in the most extreme circumstances. It is most likely to result in a 'chemical cosh' being administered, and often that results in the long-term use of antipsychotic medication that is generally only removed if the person is fortunate enough to come into contact with clinicians and care professionals who have a more progressive outlook.

Fortunate is a word that I shouldn't need to use in relation to dementia care, but that is the harsh reality for some people who are living with dementia and being medicated to 'control' their 'behaviour'. Sectioning for a person with dementia, or someone who is suspected of having dementia, is a blunt tool that is still, in my opinion, used in circumstances that it should never be.

It can be used where healthcare professionals are wrongly assessing a situation, or don't have access to other methods of supporting a person with dementia - for example highly skilled social care that rehabilitates the person in a specialist care home environment that is designed for people with dementia and that provides person-centred, rehabilitative, therapeutic care.

It is sometimes used where a person with dementia is displaying 'challenging behaviour' (a term I dislike immensely) when in reality if their needs were met they wouldn't appear so distressed. In all bar the most extreme circumstances that I talk about above, a person with dementia lashing out isn't a sign that they need to be controlled by the means of a section if they won't 'co-operate' with the authorities.

Other circumstances I’ve heard of where a section has been used include carer burnout, where the family of the person have reached a complete breakdown. It’s pretty obvious, but if we supported family carers better to begin with such a circumstance wouldn’t develop. Another example can be extreme self-neglect, where a person living alone has neglected themselves to such an extent their life is in danger. Again, sectioning here is a bit like shutting the stable door after the horse has bolted. With an earlier, gentler intervention the situation never needs to deteriorate to a point where a section is being considered or used.

I'm not naïve; I know that not every person with dementia will avoid spending time in a 'secure unit', much as I would like them to. My father spent one 3 month spell in a 'secure unit' at our local hospital, was medicated and lost half of his body weight, and I don't doubt that some of the people locked in that unit had been sectioned. I just feel that sectioning is the most severe end of mental health care and should be reserved for the extreme circumstances that I detailed above, not as a short cut to ‘dealing’ with a person who has dementia and isn’t ‘conforming’ to what others expect of them.

I dislike immensely the idea of controlling people with dementia, and sectioning effectively does that. Moreover, I question the long-term good it is likely to do. Dependency on medication, the development of a whole host of other health issues as a result, severe deterioration of the person’s dementia, and complete dependency on the health and social care systems for the rest of their life. It’s not a pretty picture.

The solution? That sectioning is seen as being the extreme, last resort event that it should be, rather than a go-to ‘solution’ for ‘problematic cases’. Improvements in awareness and education around dementia, particularly the understanding around the physical changes in the person’s brain. And most importantly, the embracing of person-centred, rehabilitative, therapeutic support, delivered in an environment that enables rather than disables the person with dementia.

Until next time...

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Turning the air blue

Many families who have a loved one living with dementia will know the moment only too well when a perfectly innocent greeting, question, conversation or even silence is broken by a swear word that prior to their loved one’s dementia would rarely, if ever, have been uttered.

Whilst those words sometimes come from family members themselves (we all get stressed sometimes!), it is potentially even more likely to have come from the mouth of the person living with dementia. They may have never previously used such language, and at the time of using it, there may be no outward sign of anger or frustration to make the use of it more understandable.

As a family you may be upset or irritated by its use, particularly if it seems to be directed at you. I’ve known families who have found such language so difficult to cope with that they have stopped taking children to visit a loved one, or indeed stopped going themselves. So why does dementia manage to produce this type of language from previously innocent mouths?

For me there are lots of reasons, but I will start with the most obvious. Think for a moment about what living with dementia might actually entail. Put yourself into the shoes of someone living with dementia. Close your eyes and imagine how they feel and what every day, hour and moment is like. Take a look at this guidance from Kate Swaffer, a lady living with dementia, to help you.

It is notoriously difficult for someone without dementia to actually accomplish this task, and even if you do, you are likely to have only hit the tip of the iceberg in terms of what dementia is REALLY like. I suspect, however, that after such an experience you might feel the need to use some pretty extreme language yourself, and if you do you are potentially a step closer to understanding the relationship between dementia and bad language.

There are other more specific symptomatic reasons too. Dementia is associated with a loss of inhibition for some people, therefore as well as being more free and disinhibited in their actions - for example in their sexual expression (as I wrote about here) - their language will potentially also follow suit. Dementia is likely to produce huge communication difficulties too. When someone cannot find the word or phrase that they need, a swear word may sum up how they are feeling, or indeed may be the only word that comes to mind at that time.

Dementia is characterised by a range of emotional reactions, and each one is likely to have bad language attached to it, mostly notably anger. The swear word(s) may be accompanied by physically lashing out, or the person may appear outwardly completely calm. In the latter example swearing may seem inappropriate or unnecessary to us, but who are we to say how the person with dementia is feeling, what they are going through, and what the correct language to express that is.

Like it or not, bad language is a form of communication used by many people. It is commonplace in society, on TV and in films, and indeed for some people forms the basis of how they express themselves in a range of situations, both positive and negative, on a daily basis. Yet somehow we feel it is acceptable to hear it from a builder, or a teenager on the street, or a couple who are arguing, but not from a person with dementia.

Perhaps that is because someone with dementia may be older, and therefore we have different expectations or standards of conduct that we expect from our older generations. Or perhaps it is because we take it too personally, feeling that such language is being used to attack us, when in reality it is entirely due to how the person is feeling or experiencing their dementia in that moment.

Swearing is labelled as antisocial in dementia care and considered by many to be a ‘challenging behaviour’. Yet have the people who are passing these judgements also considered the ways in which their own actions, however well intentioned, might encourage the production of such language. Taking away someone’s independence and their chance to achieve could irritate them. The fact that they need help with personal care, like incontinence care, could feel very upsetting or humiliating.

Most crucially of all, failing to see the person and only seeing their dementia, and depriving them of person-centred care would quiet justifiably lead many people to resort to swearing as a means of protest and a cry for help. Again, put yourself into their shoes – how would you feel? Maybe you’d want to utter a few uncharacteristic words too?

The delicate nature of our own emotions can lead us to take such outbursts to heart. My dad sometimes used language during his years with dementia that no one had heard him use before. Sometimes he would look you straight in the eye and use it, and it’s hard not to feel shocked and hurt. I know my mother found a particular word that my father used towards me on one occasion very hard to take. I, however, smiled and dad duly smiled back – before long we were all laughing again.

Defusing the situation can be important in those tense moments when the air turns blue. Also looking for any underlying cause as to why the person has used bad language, such as trying to express an unmet need or protest at a particular action. On that occasion with my dad I was giving him a manicure, a necessary task to stop him from scratching his skin until he bled, but not an experience he had ever enjoyed.

His language, though extreme in proportion to the situation, was his way of explaining how he felt. If that was the only way he could explain it then it was necessary for him in that moment, and for me, no real harm done – sticks and stones and all that. I loved my dad before he said it and I loved him just as much afterwards. A simple example of still seeing the person, not their dementia.

Until next time...

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Understanding aggression

Like so many dementia symptoms, aggression is often misunderstood, leading to inappropriate interventions. It is popular to portray people with dementia as angry and out of control, aggressive and unmanageable, frightening and dangerous. Extreme examples of aggression that lead to injury or death make for good headlines, but in reality all this does is proliferate stigma and the idea that people with dementia should be locked away, drugged and forgotten about.

Medicating someone who is simply trying to express themselves only masks their symptoms rather than getting to the cause, hence why I am wholly against the use of antipsychotics, as I wrote about here. Indeed best practice now is that they should only be used in the most extreme circumstances, and only after every possible alternative has been explored.

I don’t think that routinely locking away everyone with dementia is the answer either, a view that is backed up by the Depravation of Liberty Safeguards legislation. So how do we approach aggression in people with dementia, and what is the best way of alleviating it?

My dad went through a period of aggressive behaviour during his time in an elderly mentally infirm hospital unit and during his first spell in a care home. Indeed, his aggression was sited a major reason why that residential home, despite being a specialist dementia care setting, couldn’t cope with him. At one point dad had reportedly tried to strangle another resident, and clearly the home were unable to help him to reduce his aggression or indeed keep their other residents safe.

Prior to developing dementia, my father was a man of calmness and kindness. He was a pacifist and hated violence of any kind. In short, he was a gentle giant – or at least to me as a small child he looked like a giant! Once the TIA’s (mini-strokes) set into his brain, they created damage that began to destroy the calm and gentle aspects of his personality, and yet interestingly my dad never displayed any aggression towards us, his family.

A lot is written about ‘challenging behaviour’, aggression being a notable component of that. I would turn the idea of ‘challenging behaviour’ on its head however, and suggest that the approaches we use influence the outcomes we see. It’s easy to blame someone’s dementia and label them as challenging. It involves far more thought and consideration to examine that behaviour, look at the circumstances of it and understand what is behind it.

For example, why was my father aggressive with staff and residents, but not with us? You could look at the fact that he recognised and loved us, and that we didn’t irritate him or order him around. But I think the biggest factor is that, without realising it, we were probably the ones giving him the person-centred care he needed. We knew him, we knew what he liked, and as a result he felt familiarly and security. He didn’t feel aggressive because he didn’t feel he had to fight for what he wanted or needed.

Imagine for a moment not being able to explain how you are feeling or what you need. Words may tumble out, but those around you cannot understand what you are saying and don’t do what you are trying to explain that you need or want. You may be in an alien environment with people you don’t know. You become confused, annoyed, angry and perhaps eventually aggressive. The parts of your brain that previously gave you your self-control have been damaged, the checks and balances are no longer there, and the slightest thing can trigger a reaction.

One of the great downsides to communal establishments for care, be they hospitals or care homes, is that people from many different backgrounds, with different dementias or indeed other health problems, are mixing together. Sometimes friendships are made and happiness is found, but often people irritate each other, and because they cannot explain themselves in the way they want, they become aggressive.

Aggression is generally a sign of an unmet need, a cry for help, a reaction to an environment, individual or circumstance. It can be affected by emotions, infections or other health conditions, side-effects of medications, a lack of understanding of time and space, and even seasonal changes in the weather (for example heat can often produce a shorter temper).

Trying to identify the cause is about understanding the person.  Looking at the circumstances surrounding an aggressive episode, assessing that person’s health and wellbeing, and analysing previous routines and the history of their life prior to developing dementia. Through these investigations you may well then find the answer to resolving their aggression, because you should be identifying the things in their life that can bring them comfort, the changes that you can make to what you or other individuals are doing, and the impact any environmental factors are having.

Aggression isn’t just reserved for those who are apparent ‘strangers’ to a person with dementia. Just because my dad wasn’t aggressive towards his family doesn’t mean that all people with dementia aren’t aggressive towards their loved ones. The progression of dementia can mean that otherwise close family members aren’t recognised, and all those same feelings of frustration and anger can emerge.

Families, however, do have an advantage as they are uniquely placed to try and find the key to providing calm in their loved one’s life. No one knows the person with dementia better, and even when you feel the disease has taken the person you know and turned them into a stranger, with patience, persistence, love and compassion you will find the one thing that will restore that connection.

If I could tell you what that key is I gladly would, but our uniqueness means it is individual to each person.  What I can tell you, however, it that aggression doesn’t have to be an untreatable ‘monster’ in the room with you and your loved one. It isn’t an inevitable part of all forms of dementia, and it can be alleviated. Support in the methods of person-centred care are vital, as is access to anything and everything that constitutes therapeutic dementia care. Most of all, however, people with aggressive behaviour need those around them to understand, listen, offer support and be constantly available. Being judgemental, avoiding an aggressive person, or labelling them as too challenging to help isn’t going to give them any quality of life whatsoever. Understanding aggression is about understanding the person – who they were, are now and will be in the future.

Until next time...

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Ending the 'chemical cosh'

One of the things I feel most passionately about in dementia care is the inappropriate use of antipsychotic medications.  For many years these have been commonplace when doctors, nurses and care professionals have sought to quell the symptoms of dementia amongst their patients, but the side-effects, turning people into zombies and dramatically increasing the risk of early death, have always made them something I am completely against.

We experienced the use of these medications in my father’s early hospital admissions, firstly when he was diagnosed with dementia, and then when he had to return to hospital because his residential care home could not manage his behaviour. It was on this second admission, before he lost half his body weight from three months in the elderly mentally infirm ward, that we really experienced the ‘chemical cosh’ at first hand.

Dad was a big, imposing man, who walked constantly, displayed agitation, confusion and some aggression, and an all-consuming desire to get out of the secure confines he found himself in. For the staff on that over-stretched, demanding ward, the simplest answer was to put him on medication so that he wasn’t a ‘problem’ to them anymore. Our ‘problem’ with this, however, was considerable. Visiting someone who was suddenly struggling to walk and talk, was sleepy, incoherent and frankly even more confused, was alarming to say the least.

Even with our then fledgling knowledge of dementia, we were convinced there was a better way, and challenged the ward staff. Our success was very limited however; they had their policies, and clearly had been allocated a staffing budget that did not allow for the one-to-one care needed to replace the easy-to-administer ‘chemical cosh’, with the more time-consuming and specialised therapeutic care that we were advocating.

Moving dad to his first nursing home brought a refreshing change in attitudes. The staff were keen to remove the medication, and supported by the GP this was successfully achieved. For us it was exactly what we wanted, we had dad back. No matter what his symptoms, we found ways to manage them, and the care home staff were, for the first time, able to get to know the real man behind the dementia, and what a blessing that was. His sayings, mannerisms and conversation all tumbled out, the staff fell in love with him, and this gave them a connection to him that became vital as the  years passed and his dementia progressed, slowly robbing him of his ability to shine in the way that he had. Now, with their knowledge and love of dad, they could help him, stimulate his memory and trigger those moments that brought light and laughter into his life.

Our worst experiences of the ‘chemical cosh’ were approximately eight years ago, and thankfully times are changing. A government initiative, combined with some pioneering work by forward-thinking, innovative medical professionals, has brought about a 52% reduction in prescriptions of antipsychotics in dementia patients between 2008-11. Alarmingly, however, there are some significant regional variations that prove the fight against this culture of pumping vulnerable, elderly people with medications that carry a strong risk of hastening their death, is still sufficiently alive to warrant even tougher action.

One of the most disturbing aspects to the use of antipsychotics is the way in which carers and families of people with dementia are often not consulted about their loved one being treated with these drugs. It must be remembered that as well as patients suffering as a result of being inappropriately prescribed antipsychotics, their relatives do too. Not only is it very upsetting to see the changes in your loved one, it is robbing you of precious time that you will never get back, and should these drugs shorten your relative’s life, you will have to live with that forever.

Antipsychotics should only ever be an absolute last resort, something you give when every other avenue, including all therapeutic and complimentary therapies, have been exhausted. Drugs may be an easy option for healthcare professionals who do not know a patient, and therefore simply want to make their own working lives easier, but it is inhuman and frankly barbaric to subject a person to the life these medications will force upon them and their loved ones.

Clinicians need to listen to carers and relatives and be influenced by them, rather than the propaganda of drug companies or pressures from lazy care homes looking for an easy option to manage challenging behaviour. They also need to be educated in some of the pioneering therapies that are proving how you can care for someone with dementia without the need for antipsychotics. Great work is being done in music, art and reminiscence therapies for example, whilst often the simplest things, like spending time with a person, talking, listening or engaging them in something practical that they enjoy or that was part of a previous routine, can make a huge difference.

These are not complex or difficult tasks for care professionals, they just require dedication, personalisation and compassion – three key aspects of successful dementia care. Using a ‘chemical cosh’ could never be described as representing any of these qualities, and if the UK is truly striving for a gold-standard dementia service, then the challenge to any professional seeking this ‘quick fix’ is to find an alternative way forward.

Until next time...

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