Day-to-day with dementia

There are so many things in life that we take for granted, from the mundane to the critical, cruising through our daily lives wrapped up in our own world, largely ignoring what actually constitutes the foundations of day-to-day living. Take those things away from us, however, and suddenly we realise just how vital they are.

Think about the basics of life for a moment, like waking up in the morning in your own bed and knowing that it’s your own bed. Getting home from a day out and knowing that you are, in fact, at home and can enjoy that feeling of being comfortable and safe. Or seeing your partner, siblings, children or grandchildren and knowing exactly who they are and how you are related to them.

Recognition of places or people that form part of our everyday lives gives us grounding, a sense of belonging, of knowing who we are, how we fit into our family and where we can feel secure and be ourselves. Living with dementia has a tendency to change those key markers for many people, leaving them disorientated in previously familiar surroundings or struggling to recognise faces that have been part of their life for years.

Amongst the many symptoms of dementia, these are some of the most difficult for someone who is living with dementia and their family to come to terms with. The pain of seeing a loved one so lost and bewildered or struggling to work out who is in front of them is heart-breaking. For the person with dementia, however, it is likely to be even worse.

In the earlier stages of dementia, when a person often still has a high level of awareness, that desire to show those around them what they can do and prove that they are still their own person is huge. Anyone feeling like they’ve lost control of their life is always going to want to claw back that control, and not being able to feel comfortable in a place that you are told is home, or indeed amongst people who are apparently your nearest and dearest, would elicit feelings of confusion, sadness, frustration, anger and utter misery on the best of us.

Not being able to recognise a place that has been your home for years, to the point where you can’t even find your way to the bathroom when you need the toilet, is likely to feel degrading and humiliating. Worst still, if the place you are being told is home doesn’t feel like home, all those comforts that we associate with being in our own space are lost, and you potentially then feel permanently on edge, unable to relax or conduct normal activities.

If you are already struggling to remember how to have a shower so that all of you comes out clean, or get dressed in the right order (with co-ordination, appropriateness for the occasion and comfort in mind), make a cup of tea (in a cup, with boiled water and the right amount of milk and/or sugar) or turn the TV on and find your channel of choice, your environment will feel even more alien. A bit like living in a hotel that you found when you were lost, where you’ve no idea how anything works, haven’t packed the right things, don’t want to bother anyone by asking (since you then feel like a nuisance) and can never leave. Suddenly it makes a stay at Fawlty Towers* look quite appealing!

When it comes to knowing who the people around you are, it’s an even more terrifying prospect. From time-to-time we all struggle to put a name to a face, but when it’s the people you grew up with, those you have lived with for years, the children who you bought into the world or the grandchildren you lovingly cradled, life can feel very desolate.

Not being able to recognise family members can have far-reaching consequences too. You might have woken up next to your partner for the past forty years, but if the day comes when you wake up next to them and have absolutely no idea who they are, or where you are, you are likely to feel terrified or angry. Many a call has been made to the police by a person with dementia who cannot recognise their surroundings or the person that they are with, and as such are feeling in danger or believe that they are being held against their will.

Without recognition of who someone is, or reasoning to assess a particular situation or the actions of a family member, accusations of improper conduct or criminal behaviour like abuse or steeling can be incredibly hurtful and mystifying for families. Paranoia is a common symptom of dementia, and something we experienced with my dad when he became convinced his neighbours were stealing from him. For the professionals who are often called in to investigate such claims, it can mean treading a very fine line as you try to discover if someone is paranoid as a result of their dementia, or is in fact trying to report something very real and potentially unlawful.

With all of these complexities of day-to-day life with dementia in mind, my advice to you today is to stop what you are doing for a moment, take in the familiarity of your home, the love of your family and the security that comes from these things, a security that those of us without dementia often take for granted. It is anything but mundane, it’s priceless.

Until next time...

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*For non-UK readers, this is a 1970's British TV series

An urgent need to understand

There are a few ‘taboo’ subjects in dementia care. Taboo because we find them embarrassing, too personal or just uncomfortable to even consider. Continence is one of them.

Dementia isn’t a disease that respects the delicate workings of the bladder and bowel. Those vital signals that the brain needs to allow us to relieve ourselves comfortably and in privacy are often lost as dementia progresses. The devastation that incontinence can cause both the person with it, and potentially a spouse or family member who is caring for them, is immense. The more private a person is the harder it will be felt, which was certainly true for my father, who was incontinent for nine years. In his case it came about as a result of a crisis point in his dementia, when he had a large stroke and ended up in hospital (as I wrote about here).

He struggled to remain continent in the busy, unfamiliar hospital environment, and once he was moved into a residential care home he was largely doubly incontinent. Sometimes he was able to get to the toilet in time, or use a bottle, but more often than not he needed a pad. Not that dad himself understood the need for the pad, and he continuously removed it, leading to numerous accidents and changes of clothing.

By the time he was moved into nursing care, and then lost his ability to walk, he was fully incontinent and relying totally on pads. Key factors during those later years were spotting when his pad needed changing, ensuring it was done promptly, that he was thoroughly cleaned and dried, and then a new pad being available. Extraordinarily, at one point a directive was issued to the care home by the local health authority saying that they would only be supplied with a limited number of pads, leaving each resident with an allocation of 3 pads per 24 hours.

We fought against this rationing, eventually getting it overturned. In my view it is a basic human right to be kept clean and dry. It goes against every notion of dignity to restrict how many pads a person can have. If a baby was left in a dirty nappy, that would be considered child abuse. The same principles must apply to the care of adults.

Being left in wet or soiled pads increases the risk of UTI’s and other infections, pressure sores and associated skin problems, all of which are awful for the person affected. Moreover, as a money saving exercise rationing pads is entirely counterproductive, since the treatments needed to combat the effects are likely to cost far more. In someone with dementia, the discomfort of sitting in a soiled pad could also encourage them to put their hand into their pad, potentially getting faeces on their hands and spreading germs.

Accurately assessing someone for incontinence products is difficult since the very nature of incontinence is that it is unpredictable, and dependent on factors such as food and drink intake, the side-effects of medications, and unexpected issues like tummy bugs. Imagine an outbreak of diarrhoea and vomiting in a care home where most residents are immobile and incontinence pads have been restricted. We cannot condemn staff for providing poor care if they are not given the basic materials needed to provide good care.

That said, incontinence care isn’t just about having enough pads, how those pads are used is also vital. If care staff develop poor practices, like leaving someone in wet or soiled pads, or not cleaning and drying the person properly when they change a pad, all the supplies of pads in the world won’t help. Likewise, double padding, where two absorbent products are placed on top of each other, is another example of poor care. This is often done as a short-cut to avoid having to do a full-blow change every time a pad is soiled, but it is extremely bad practice since it is very uncomfortable for the person wearing them, will increase the risk of pressure sores, heat rashes and skin problems, and means that two products are likely to be contaminated.

Of course ideally you want to prevent incontinence to begin with, and I feel that in relation to my father he was rather written off in this regard. There is a prevailing attitude that incontinence is a natural part of dementia, but we need a far greater emphasis on helping people to remain continent for as long as possible.

So how do you help someone with dementia to remain continent? Mobility is vital. They need help to maintain their independence, using mobility aids if necessary, and these need to be readily available and able to fit inside the toilet cubical. Environmental factors are also extremely important. Is the route to the toilet clearly marked and free of obstacles? Is the signage clear (the word ‘toilet’ and a picture of a toilet, rather than male and female signs). Once inside the toilet cubical, is it clear where the toilet actually is (colour contrast rails and seat)? See the work of Stirling University for more tips on designing dementia friendly environments http://dementia.stir.ac.uk/virtualhome.

The other key issue in helping people to remain continent is to have assistance readily available. Having someone to help you to the toilet, or bring you a commode, may be all a person needs to remain continent. Like so many aspects of dementia care, time, patience, continuity of care and good communication are vital in promoting continence.

Once you get to know someone you may be able to anticipate when they need to go to the loo by picking up on key signs like restlessness, and can gently offer some support to get there. They may also feel more able to talk or motion about needing the toilet if they have continuity of care. Being able to estimate the urgency of a person's need for the toilet is a key skill, as is not becoming fatigued by someone with dementia repeatedly asking for the toilet, even when they have just been, which should never be seen as a deliberate attempt to mislead those charged with their care.

Someone with dementia can easily become confused about needing the toilet. They may forget they have been, may genuinely need to go again, or feel anxious about getting there in time, even if they don’t presently feel the need to go. Persistently asking for the toilet, and then not doing anything once there, can also result from being bored or needing human contact, hence why it is important to offer someone with dementia meaningful activity to keep them engaged and promote a good quality of life.

People with dementia can easily lose continence if they aren’t supported. They may even know that they need the toilet, but aren’t able to facilitate that due to their dementia and a lack of support. Changing our attitudes towards continence, and breaking down the taboo’s associated with going to the toilet, must be a key priority if we are to improve the care provided to everyone who is living with dementia.

Until next time...

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Let's talk about dementia - Humour

Welcome to the fifth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 5 - Better to laugh than cry

I have encountered many amazing people with dementia who incorporate humour into living with the disease. That’s not to say that they find the distasteful jokes about dementia funny. They don’t, and those jokes really aren’t funny to anyone who has personal experience of dementia, but humour that lightens the load for the people with the heaviest burdens is a priceless gift.

Dementia’s naughty side can produce words from lips that had never previously uttered such language. Those moments of confusion, misunderstanding or using the ‘wrong’ words can bring smiles and laughter, both for the person with dementia and those who they are interacting with.

Finding humour is an important element in helping someone to live well with dementia, and for the person themselves it is often far better to laugh about something that they are finding challenging rather than getting angry. Making light of difficult situations can remove those feelings of inadequacy or guilt at not being able to do something.

Laughter, as they say, is a great medicine, so take those opportunities to talk, joke, smile and laugh together to find the happiness and wellbeing that most people never associate with dementia.
 
Next post on 24 May 2013.
Until then...

 

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Hydrated and happy

Dehydration is one of the biggest challenges facing anyone caring for someone who is older or living with dementia. Many older people are known to be chronically short of fluid in their bodies, leading to urinary tract infections and many other illnesses which can result in life-threatening situations that require urgent hospital treatment and intravenous fluids.

Good levels of hydration are vital to remain healthy and alert. Without them we can get confused and unresponsive, two symptoms of dementia, and also two reasons why it may be assumed that someone has dementia even when all they need is to increase their fluid intake. Understandably, in someone who is already known to have dementia, dehydration can make their dementia much worse. So how can you ensure that the person you are caring for remains hydrated and happy?

First of all consider the sort of drinks being offered. Have you tasted them personally? Are they pleasant? It may seem obvious, but it’s easy to ignore the fact that if what we are offering someone doesn’t taste nice it is unlikely to be welcomed. When a person has dementia they may not be able to articulate their dislike for something, so they will just leave it or spit it out, causing immense frustration for them and their carer(s).

Many care providers are hooked on giving their residents squash – water flavoured with concentrated and often additive-packed so-called ‘fruit’. This is about as far from real fruit juice as you can get – it is synthetic, can be metallic tasting and is full of preservatives that should be avoided. I certainly wouldn’t want to drink it and we banned squash from being given to my dad (as I wrote about here), favouring real fruit smoothies that were a perfect consistency and a delicious taste.

It is also important to consider how someone has always liked their drinks served. Are their long-standing personal preferences for milk, sugar or other additions being met in their hot drinks? Are they the right strength, and if they have always liked a particular brand, is that what you are making for them? Are their cold drinks the right flavour and style of drink?

Also think about the temperature of every beverage you serve and be mindful of seasonal preferences – not everyone wants a hot drink on a warm summer’s day.  If the person is able to drink independently, make sure the cup, mug or glass is something that they can pick up easily – assess the weight, style of handle and possibility of spillage. Finally, is the receptacle reflective of their personal choice? I once knew a lady who had spent the previous 70+ years of her life drinking her tea only from a cup and saucer. When carers started giving her drinks in beakers or mugs she simply refused to pick them up.

If you’ve covered all of these permutations and drinks are still not being welcomed, it is worth considering if someone’s preferences have changed. If they are unable to articulate how they feel, you may never know if they are looking for something different. Try alternative tastes and styles of drinks, including things that they may never have had before or that feature stronger flavours (taste buds can begin to fail as we get older).

Also think about how food can contribute to hydration. For example fruit and vegetables often have a high water content, while items like dry potato, al dente pasta or rice could sap fluid levels. Compensate for this by creating sauced based meals and ensuring that what you are serving is sufficiently moist (ie creamy mash rather than dry, lumpy mash and pasta that is served with a moist sauce).

Try things like ice creams and yogurt (being mindful of the phlegm-producing effect of dairy products that I wrote about here), sorbets, jelly or ice lollies. All of these have a high fluid element and can be the sort of ‘treats’ that might tempt someone when a drink in a glass or mug won’t. Cold products can also have a numbing effect on the mouth and throat, which helps some people who are scared of the feeling of food or drinks in their mouth.

Other contributing factors to dehydration can be the development or progression of a swallowing problem (that I wrote about here), dental problems, and symptoms of advanced dementia like being unable to recognise the link between the drink in front of you and the need to pick it up and swallow the contents. There may be muscle weakness, pain in joints or even bruising that could make it uncomfortable for someone to pick up a drink, particularly a heavy one. There may also be fear attached to drinking – for example being worried something may be too hot or cold, or that it could be spilt. Drinks may also need thickening if someone has a swallowing problem, but this can have mixed success depending on the beverage and can (despite what manufacturers say) change the taste of the drink.

When someone has advanced dementia, and especially if they develop a swallowing problem, the only solution to keeping them hydrated could be spooning or syringing drinks. In my father’s case, spooning was very successful. Thickened drinks, slowly spooned, allowing him time to swallow between each spoonful worked very well for a long period. Some people prefer syringing, but this must be done slowly since a sudden injection of fluid into the mouth can be startling, unpleasant and potentially lead to aspiration.

Ultimately, the key to keeping someone hydrated can often be trial and error, creativity and perseverance. Your role in helping them to prevent dehydration is one of the most valuable and rewarding things you can do, and most importantly of all it is lifesaving.

Until next time...

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Christmases past and present

Christmas with dad

I think for most people Christmas is about the many traditions we each have for celebrating the festive season. For the last nine years our family traditions were modified to fit in with my dad’s life in care – this year will be our first Christmas without him, and to be perfectly honest I am really not quite sure what to expect.

Many people assume that visiting a loved one in a care home is hardly the ideal way to spend Christmas. I would admit it does take some adapting to – modifying your established routine can be a bit of an organisational and diplomatic challenge, eating two Christmas lunches (a small one with dad and then our main one with the wider family later in the day) is not ideal for the waistline, and you are in danger of spending the entire day rushing around to such an extent that you feel Christmas has totally passed you by, but I would not have missed those precious moments with dad for anything.

Our last Christmas with him came amidst the backdrop of huge problems within his nursing home (that I wrote about here), and dad himself was not at his best as he battled yet another chest infection. He struggled to eat much of his Christmas lunch and was entirely disinterested in his presents – in contrast to previous years when he demolished extensive 3-course meals and complained that he did not like his presents!

Our approach to Christmas for dad was always to make it as happy and festive as possible. We would decorate his room with traditional items that he was familiar with, fix his cards to the side of the wardrobe so that they did not mysteriously disappear, buy and wrap lots of presents (new clothes - since clothing wears out so quickly in care homes - and CD’s of much loved music were all staple presents), and arrive on Christmas morning, me resplendent in my Santa hat, with the camera and lots of festive cheer.

Our challenges were minimal, however, in comparison to the difficulties many family carers face when they are looking after a loved one with dementia at home over Christmas. For many carers Christmas is a time of isolation, and while their neighbours celebrate around them, 25th December will be just another day of relentless struggle and ultimately exhaustion. With so many services shut down for the holiday, Christmas can also be a nightmare time for getting help should your loved one become ill, or indeed be very frail and nearing the end of their life.

Even for carers who are more supported, many of the Christmas traditions can present challenges. For example some decorations can be dangerous if the person with dementia does not understand what they are, certain colours or flashing lights can cause upset, an excessively decorated or crowded dining table could lead to confusion, and even your menu may need to be adapted to take into account a loved one’s changing eating habits.

For most family carers, however, I think one of the greatest concerns can come from how visiting friends or relatives may react to your loved one’s dementia. Be mindful that they may need guidance to understand and support the person you are caring for appropriately. For example, it is not uncommon for people with dementia to forget how to open cards or presents – we coped with this by gently helping dad, rather than just waiting, or demanding, that he manage alone.

Of course whilst so many of us are focused on Christmas, is it also important to remember those people with dementia, particularly in care homes, for whom Christmas is not part of their tradition or religious beliefs. Their wishes can often be forgotten amidst the celebrations, and they can become even more confused or disorientated by Christmas paraphernalia that is alien to them.

Looking back now over those many Christmas with my dad during his years with dementia, I would advise anyone in the position that we were to make the most of those special times together. They do not last forever, and Christmas is overwhelmingly a time to embrace our families, particularly the most vulnerable amongst us. Sadly this year I will be putting my dad’s Christmas card on his grave, but memories of Christmases past (and particularly this one that I contributed to the Prime Minister’s Christmas dementia campaign ‘Xmas to Remember’) will warm my heart and hopefully ease the pain.

As this will be my last blog post of 2012, I will sign off by thanking you all for your support since I launched D4Dementia back in May. I am very proud of the way the blog has grown, the feedback from people of all backgrounds to say how much they have enjoyed reading it, and the recognition it received by being shortlisted for a Roses Media Award. My next blog post will be in January 2013, so until then keep warm, well and happy.

Merry Christmas, and may 2013 be the best year yet for improving the lives of people living with dementia and their families.

Until next time...

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When illness strikes…

Dementia brings so many concerns for the wellbeing of those who are living with it, not least the risk posed by infections. Whenever my father was struck down by a bug, suddenly we would be plunged into a world of relentless uncertainty, desperately hoping that he would make it through his illness, always mindful of the possibility that he would not.  

One of the most striking things about dementia is the physical decline that it can bring. My father went from being a man with a very imposing physique to someone whose body shrunk to less than half its size. He went from walking constantly to being unable to move independently, from feeding himself to being entirely dependent on others for his food and drink intake. He lost the fullness in his face as a result of having no teeth, his limbs became bony, his skin very fragile and prone to bruising and tearing, and he was doubly incontinent for the last nine years of his life.

This physical decline leaves the person much more susceptible to infections that can be potentially life-threatening. Losing weight makes the body more vulnerable generally, and losing mobility makes pressure sores more likely and respiratory illnesses more difficult to shake off. Swallowing problems greatly increase the risk of pneumonia as a result of choking, or dehydration from not being able to intake enough fluids. Lack of fluids means an increased risk of urinary tract infections, and incontinence doesn't help with that either. Incontinence can also contribute to pressure sores if the skin is not kept clean and dry, and in a person with fragile skin all over their body, skin infections as a result of cuts or scratches are also possible.

In fact if you sit and think about just how many illnesses can be associated with the physical decline that dementia brings it is actually frightening. Over my father’s 19 years with dementia, and particularly during the last few years when he became very frail, we experienced all of the above problems. It comes as no surprise to me that so many people with dementia end up in hospital; my dad needed hospital treatment for both pneumonias and UTIs during the last 9 years of his life. This involved IV antibiotics and fluids, plus oxygen therapy, suction and chest physio for the pneumonias and catheters for the UTIs.

Thankfully, given the very mixed experiences people with dementia can have in hospital (as I wrote about here), my father was mostly treated in his care home with oral antibiotics. The routine prescription of antibiotics may be increasingly controversial now, but in my dad’s case they certainly gave us additional precious time with him.

Illnesses in people with dementia, apart from being very distressing to watch, often make dementia symptoms much worse. Infections contribute hugely to increased confusion and disorientation, affect communication, and can result in a loss of independence in areas of personal care, continence and eating and drink that is not always regained. Sadly, however, it is almost impossible to avoid a loved one becoming ill.

Care staff are frequently compelled to come into work when they are unwell, since they will either not be paid or their employers will be short-staffed if they stay at home. Visitors often come into care homes and hospitals harbouring illnesses, and requests to stay away if you are unwell go unheeded. I distinctly remember encountering disgruntled relatives outside a care home I arrived at one day, unhappy that they were unable to visit their loved one due to the home experiencing an outbreak of diarrhoea and vomiting.

I am not suggesting that care homes can become sealed germ free places, clearly that is impossible, but halting the spread of illnesses within health and social care settings, and the wider community, has to be the overriding aim. It should never be the case that people with dementia are considered a burden that can be reduced by allowing illnesses to proliferate, putting the most vulnerable at risk of serious complications and possibly early death.

We all suffer when we are unwell with an infection, but people with dementia often struggle far more because they cannot articulate how they feel, what help they need or the treatments that they would want. In those circumstances they need particularly specialised care delivered by knowledgeable and sympathetic professionals, whose priority is to give that person the most effective care possible so that they have the best chance of recovery.

Sadly some illnesses are too severe to recover from – the last pneumonia my father had was one too many for his frail body and led to a slow decline until he passed away a month later. We always knew the day would come when he could no longer fight, and given his physical frailties and propensity for chest infections, it was highly likely that pneumonia would end his life. Understandably, having worked this out many years before he passed away, every time he was ill that chilling realisation that this could be his last fight loomed large on the horizon.

Of course you never know when these illnesses will strike – my dad had severe infections in the summer as well as the winter - but I know that the majority of carers are fearful of winter ills the most. They often hit our elderly, vulnerable loved ones the hardest, and not just in care homes either – many people living in their own homes struggle to keep warm enough and become more susceptible to respiratory problems as a result. So whilst us younger people are all striving to keep ourselves well, spare a thought for all those carers with frail relatives for whom this is a particularly worrying time of year. If anything persuades you to be mindful of good hand hygiene and infection control, I hope that preserving the wellbeing of our most vulnerable people is it.

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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