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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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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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...

You can follow me on Twitter: @bethyb1886

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