Another pill won't matter, will it?

There is a common misconception that there is a pill to fix virtually any health issue. I've written about this before ('A pill for everything?') in relation to medications for dementia (most notably prescribed for people with Alzheimer's Disease), but for this blog post I want to concentrate on a topic I'm seeing with alarming frequency in my consultancy work  - Poly pharmacy.

What is poly pharmacy?

Poly pharmacy is when a person, often an older person, is taking 4 or more medications. It's often related to older people because as our bodies age, more can start to go wrong that requires medication (or that it's perceived requires medication). Poly pharmacy is also more dangerous as we age because our bodies often can't cope with multiple medications as well, putting strain on vital organs and potentially affecting the person both physically and mentally.

How does poly pharmacy happen?

Very easily! Common medications that occur frequently in cases of poly pharmacy include drugs to treat high blood pressure, digestive problems, pain, diabetes, thyroid problems, sleeping problems, and medications for depression/mood/behaviour. Indeed, many times in my dad’s life with vascular dementia he was prescribed more than 4 medications, making him the subject of poly pharmacy (although we had never heard of this at the time).

There is a well worn joke that as you age you 'rattle' from all the pills you swallow, but poly pharmacy is no laughing matter, nor should it be ignored or considered 'the norm'.

Why is poly pharmacy a problem?

Once a person is taking more than 4 different medications, pharmaceutical companies cannot reliably tell you what the side-effects might be. Of course there might be none, but there could also be serious underlying problems developing that the person either is or isn't aware of. Unchecked, at best these can impact on the person's quality of life, and at worse could lead to serious illness or injury (for example falls if the person experiences sleepiness as a side-effect).

How does poly pharmacy impact upon a person with dementia?

Many people with dementia also live with other long-term conditions that require medication, or they are given medication to prevent certain conditions from developing (for example a statin because it's believed they lower cholesterol, although opinions are divided). Given the nature of the cognitive problems that characterise dementia, the person may be more vulnerable to being given medication because unlike someone who isn’t living with dementia, a person with dementia may not have the communication ability, or confidence, to question a prescription effectively.

The tipping point

The tipping point into poly pharmacy will vary from person to person, entirely dependent upon whether the individual has historically been a person who has lived with multiple long-term conditions for a long time prior to their dementia and is used to managing some or all of those conditions with medications.

However, the prescription of anti-dementia medication upon a diagnosis of dementia might take a person into the realms of poly pharmacy, as might the prescription of sleeping medication or anti-depressants, both of which are common pharmacological ways of 'managing' problems a person with dementia is perceived to have with 'behaviour'.

Questioning the prescription of such medication to manage 'Challenging behaviour' (a phrase I dislike - read this blog for the reasons why) is particularly important because these medications are often used instead of the more controversial antipsychotics. Antipsychotics have been the subject of a target to reduce their prescriptions since they were linked with serious side effects and even the premature deaths of people with dementia.

Replacing one 'chemical cosh' with another one, albeit potentially a milder type of medication, is still dangerous in my opinion, especially in a person already taking other medications who is then at risk of poly pharmacy.

Standing up against poly pharmacy

I feel strongly that everyone needs to understand the risks of poly pharmacy. That's not to say that every medication given is wrong, or that anyone should suddenly stop taking medications that may be absolutely essential to them. But awareness of poly pharmacy, the confidence to try and guard against becoming the subject of poly pharmacy, and regular reviews for anyone taking multiple medications is absolutely vital.

Doctors who understand poly pharmacy would always be very supportive of trying to avoid it, and only prescribing absolutely essential medications that are then regularly reviewed.

Supporting a person with dementia who may be at risk of poly pharmacy

Ideally, a person with dementia would be supported at medical appointments by a family member, friend or advocate, but that won't be the case for everyone. If the person is alone, or the individual with them doesn’t feel confident in speaking up or questioning a medication, then often the medication will just be prescribed.

Even social care professionals accompanying a person from a care home to a GP or hospital appointment may not feel they have the skills to question a prescription. For this reason, it is vital that training in poly pharmacy and empowering staff confidence is given by all social care providers, as they are often unofficial advocates for a person with dementia.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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The ‘F’ word that no one wants to hear

Most older people are frightened of having them, most relatives of those older people are equally concerned by them, and most health and social care services are under pressure to avoid those in their care having them. Falls really are the ‘F’ word that no-one wants to hear.

 

The fear of falling that older people have stems from a variety of reasons - the most notable include the likelihood of injury (possibly serious injury that could include hospitalization, operations and long-term rehab - which could include a prolonged spell of being bedbound and/or needing residential care) and the loss of independence and confidence that a fall often brings. Other psychological problems include embarrassment, feelings of becoming a burden to others, and ultimately isolation from potentially not being able to get out and about as you once did.

 

If a person has osteoporosis, a fall is a serious matter. Broken bones, when you already have a condition where your bones are weak, is clearly something to be avoided. Post-menopausal ladies are particularly susceptible to osteoporosis and the drug treatments currently available are controversial, with some people claiming that they actually increase the chances of brittle bones.

 

For the relatives of an older person, the implications of a loved one falling can be huge, not just from the point of view of being incredibly anxious for their wellbeing (particularly if they need an operation), but also because a bad fall could lead to a long-term caring role if it leaves your relative less independent. The desire to minimize falls can often leave families wanting to wrap their loved one in cotton wool, but that in itself could lead to an older relative wanting to take more chances just to prove what they can do.

 

Risk-aversion, however, is something most commonly associated with health and social care professionals, as I wrote about here. Their services are often judged on the amount of falls those in their care have, and since serious falls can also lead to death from other complications in very frail individuals, they are under immense pressure to minimize falls. 

 

I dislike bringing every health issue back to finances, but it is a well-known fact that falls cost the health service a lot of money – in excess of £2billion a year.  Add in the pain, worry and potential long-term care implications and you would have a much higher figure (if indeed you could even put a cost on those). Despite this my dad, a gentleman who had multiple falls during the time when he was compelled to walk due to his dementia, was only ever given hip protectors and a crash mat by his bed to help minimize his chances of breaking bones. Possibly a hard-hat might have been more use on the occasion when he burst a blood vessel in his head from a fall and required staples in A&E.

 

Meanwhile, if you are an older person who is already in hospital, don't assume you are necessarily safe from falling. I recently heard about an internal study on falls that was conducted by an NHS Trust providing older people's inpatient mental health services. Amongst the stats they collected, they discovered that the people falling in their care were on average being given 4-12 different medications.

 

More worryingly, despite discovering this (which personally I don't find surprising), they didn't present either an explanation for such a significant level of polypharmacy or a proposal for how they were going to tackle it. Chances are little was really understood about these multiple drug interactions, and it was going to take a pioneering medical and pharmacy team to enable them to systematically review each patient and reduce their medications.

 

Although required to prescribe less antipsychotics in the treatment of people with dementia, medics often use other drugs such as antidepressants or sleeping tablets to make patients more 'compliant'. However, the effects on their cognition and ability to be alert enough to move around safely is likely to be severely impaired, and that is to say nothing of the side-effects and interactions from all of their other meds.

 

In this Trust, and indeed any health and social care service where older people are having falls, I would like to see a complete prescription policy review, environmental changes (for people with dementia), regular OT input that helps people with exercises (including for balance), and investment into stimulation and boredom-reducing activity. Alongside this needs to be sensory assessments (to check for eyesight problems that could affect a person’s ability to see where they are going, or hearing problems affecting balance), assessments for other medical conditions that could lead to an increased risk of falls, careful consideration of foot health and suitability of footwear, and appropriate provision of walking aids as required. Last, but by no means least, there must be safe staffing levels in health and social care environments.

 

It cannot be overstated just how important safe staffing levels are. Firstly they ensure adequate supervision, which whilst it won't prevent every fall will stop some and enable learning and change to happen to promote further falls reduction. Secondly they will provide support to people who want to (and need to) move around. Mobility is vital but it often requires support and for that to be available in a timely fashion, for example if a person wants to go to the loo urgently. 

 

Imagine being an older person needing the loo, asking for help to get to the loo, that help not being forthcoming, getting desperate and trying to go on your own, falling and then soiling yourself - a more undignified scenario you really cannot contemplate. The opposite outcome is a health or care professional coming to assist you on your first request, helping you to the loo, waiting for you (not returning 30 minutes later when you've got so fed up of waiting you've tried to move and fallen) and then helping you to get to wherever you need to go.

 

We have to elevate falls prevention (without becoming overtly risk adverse) into the priority it clearly is. NICE issued this guidance and there is plenty more well-researched literature, including this from the Kings Fund. We know falls are bad news for everyone involved, but for the person falling most of all. We talk extensively about the dignity agenda in the health and social care of older people - preserving that must include proactive falls reduction. The nature of the human spirit is such that we will never prevent every fall, and in trying to could stifle people's liberty in a totally unacceptable way, but the simple measures that are possible must be implemented.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Restraints – The dark side of care?

"They kick, punch and bite us, what do you expect us to do?" The words of a social care worker caring for people in a residential dementia unit, explaining why they sometimes have to physically restrain their residents or request prescriptions for antipsychotics.

The use of restraints is only legal in England and Wales if it is covered by a Deprivation of Liberty Safeguards (DoLS) order which, according to recent figures released by the Health and Social Care Information Centre, have increased year-on-year since their introduction in 2009. 11,887 applications were made in 2012/13, of which 54 per cent related to people living with dementia, but as a society how do we feel about restraining people with dementia, even when it is done legally?

Restraints can involve using bedrails to keep someone in their bed, straps to tie them to a fixed object, seatbelts on chairs or locking them in a room. I’ve seen care home residents belted into wheelchairs to stop them from moving about – although one gentleman proved sufficiently strong to get to his feet and move around with the chair attached. I’ve also seen residents who have been strapped into wheelchairs injure themsevles trying to get out of the chair, with chairs ending up on top of them or arms and legs getting entangled with metal.

As far as bedrails are concerned, I saw extremely high ones used on a man in a hospital bed to try and prevent him moving around the ward, but this was entirely inappropriate since he managed to climb over them on numerous occasions and eventually hurt himself as a result. Very low-level bedrails were used on my dad’s bed in the last couple of years of his dementia, but my written consent was obtained before they were used and their purpose wasn’t as a restraint, but purely as a safety measure to ensure he couldn’t roll out of bed onto the floor (he was already immobile so wasn’t being prevented from getting out of bed by them, merely from falling during his sleep).

The use of antipsychotics was of course once commonplace in dementia care, as I wrote about here, with my dad enduring a period on this type of 'chemical cosh' medication before we managed to get it stopped. I am still regularly contacted by families who are having to cope with the trials and tribulations of having loved ones with dementia on antipsychotics, despite such prescriptions now being seen very much as an absolute last resort for only the most severe dementia symptoms when all other interventions have failed.

So how do you cope as a care worker if you are going into work every day and being kicked, punched and bitten? The answer is you potentially don’t, but more often than not that is due to a failing in the system, rather than something the person with dementia or indeed the person caring for them can control. If anything, those two individuals are the biggest losers in a system that too often resorts to factory farming our older people. A lack of funding for care has led to cutbacks in staffing levels and specialised training in many organisations, and the result could be described as a return to the dark-ages of care provision.

What is perhaps most alarming about the situation around DoLS applications isn’t the number of applications being made or indeed the number being approved, it is the persistent fear of how many restraining practices are being used illegally. Behind closed doors many ‘professionals’ are looking for a quick fix for ‘challenging behaviour’ that will take up minimum staff time but provide maximum effect in terms of containing someone who they see as a problem. For them, a DoLS order isn’t necessarily a priority, particularly as they would need to show that the restraint measure being proposed is appropriate, in the person’s best interests and is the least restrictive possible.

In my mind, depriving someone of their liberty should only be done in the most extreme cases, when all other avenues of care and support have been exhausted and the person with dementia is a direct danger to themselves or others around them. To avoid the need for restraining measures, organisations may need to implement institutional changes in the way care is provided in order to alter staff behaviour resulting from a cultural lack of understanding of dementia, with someone leading those changes who believes that there is another way to approach dementia care.

If staff have never been trained in how to cope with someone experiencing severe dementia symptoms, like aggression, confusion, walking, problems with orientation or issues with sleeping, they are likely to feel out of their depth and looking to resort to restraining methods to protect themselves and those around them. It’s a natural instinct, but it is an instinct that never needs to be seen if an organisation is capable of responding to the needs of individuals with appropriate staffing levels and by embedding a culture of person-centred care throughout their organisation.

I’m not saying that dementia is an easy disease to manage, but however hard it is to look after someone experiencing it, it is far harder for them to actually be living that experience or indeed handling the consequences of the actions of those who are charged with caring for them. Sadly most organisations are so financially squeezed that they are operating on budgets that don’t allow for either specialised training or one-to-one care provision, therefore restraints, be they physical or pharmacological, are a cheap, simple solution.

In situations where that is true, I feel a deep and profound sense of shame that we cannot respond in any other way, and even when organisations have a DoLS application approved and are acting entirely within the law, I struggle to comprehend how we cannot enshrine in law care practices that could avoid the need for restraint altogether. Idealistic maybe, but consider this. Dementia may remove someone’s ability to be proportionate in their response, but those not living with dementia cannot claim the same. In my mind we must always be proportionate in our response.

Until next time...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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A pill for everything?

Modern medicine is a wonderful thing. It has given us cures to illnesses and diseases that previously killed people in their prime. We have surgical procedures and treatments that can alleviate suffering and give humans of all ages a new lease of life, and there have been many medical and scientific pioneers whose work deserves only the highest praise.

Sadly, with these medical advancements has come a desire for pharmaceutical companies to provide a pill for everything. We want to pop something in our mouth, swallow it and for all our problems, pains, issues and illnesses to magically disappear. We now have pills for weight loss. What about a pill to replace exercise? Many drugs that are prescribed are little more than placebos, yet as a society we still demand more.

We can’t understand that antibiotics are utterly useless at making your average sore throat, cough or cold for an otherwise fit and healthy person any better (and could even make them worse). We just want to take something, anything, so that ‘normal’ life can be resumed as soon as possible, but what happens when their isn’t a suitable pill, it doesn’t work or doesn’t even exist?

Drugs for dementia is a thorny issue. First of all, drugs have not been developed for all forms of dementia. Those that have (licenced for use in early-stage Alzheimer’s) are far from universally effective, and it can be impossible to predict who they will work for. Even in the people they do work for they only alleviate symptoms. No pills currently exist to cure any form of dementia.

Despite this, the UK Secretary of State for Health, Jeremy Hunt, seems to believe that early diagnosis of dementia (that I wrote about here) is vital to provide people with the chance of a prescription for one of these dementia drugs since they can, “Help stave off the condition for several years.” The evidence for this, however, is far from conclusive, with some doctors admitting that while they, “Improve cognitive function a bit,” the consensus seems to be that they may only, “Turn the clock back by about six months.”

I have heard and read stories of people who, having been prescribed Donepezil (Aricept), rivastigmine (Exelon), galantamine (Reminyl) or Memantine (Ebixa), have seen huge improvements in their symptoms, which is great for them and their families. Amongst people who I know personally, however, those who have had these drugs have seen little or no improvement, in some cases decline has continued, and having eventually come off the drugs decline has advanced at an alarming rate and resulted in them dying long before they were expected to.

Dementia drugs really aren’t for everyone. Doctors should not be under pressure to prescribe regardless of looking at a person’s individual history, present symptoms and future wishes. I am actually very thankful that my father wasn’t given dementia drugs. It was bad enough that we had battles over the use of antipsychotics (as I wrote about here), and other drugs like statins that I gather he was only put on because, “Every one of his age should be on them,” and antidepressants, “Because everyone with dementia is depressed.” Wherever these gross and inaccurate generalisations come from they have no place in a healthcare system that should be embracing personalisation.

There is precious little patient care involved if a doctor has lost the ability, or autonomy, to prescribe based on what he or she genuinely believes the individual patient actually needs.  Is pressure from pharmaceutical companies causing this approach to our healthcare? Or is it pressure from the government? It is almost certainly about making someone somewhere very rich at the expense of the person who is given these drugs, often at a time of significant vulnerability in their life and by a doctor who they most likely have complete trust in.

To put the effect of common drug treatments into perspective, I currently know of someone in their 50’s, on a cocktail of prescription drugs including antidepressants and sleeping tablets, who myself and others have noticed struggling with significant memory and behavioural problems. Prior to knowing the side-effects of the medication that this person was taking, I seriously wondered if they had the beginnings of early-onset dementia. Long-term, the implications on their brain health from these drugs could mean that sadly I may not always be wrong about that.

For me, the burning question in modern healthcare is what has happened to personal responsibility? Of looking at ourselves, our lifestyles and the choices that we make and changing those rather than expecting a pill to do it all for us. Quick fixes and easy options might be more tempting in the here and now, but what about the future? When all the pills we take stop working, or the side-effects cause long-term damage that more pills can’t fix, what then?

In the case of people with dementia, drug treatments really aren’t the only option. Indeed for many people they aren’t an option at all. There are no quick fixes. In fact ultimately there isn’t a ‘fix’ at all, but what will work for everyone is care that looks at each person as a whole and finds the elements that will help them to live well with dementia. The most effective treatment lies within us, unlocked by those with skill, dedication and compassion, qualities you will never find in a bottle.

Until next time...

You can follow me on Twitter: @bethyb1886

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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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