Understanding aggression

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next time...

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Catching some z’s

There are few things more closely associated with wellbeing than a good night’s sleep. It is something many of us take for granted until it is disturbed by the people or environment around us, or when those dreaded nights of insomnia strike and you lie in bed wishing more than anything that you were asleep.

Although some people can function well on very few hours of shut eye, most of us struggle through the day when we have not had the sleep we need. Sleep deprivation as a result of being a parent is well documented, and yet very little is said about the many carers who never get a good night’s sleep because they are looking after a loved one. For those who are caring for a relative with dementia, sleepless nights can become a feature of everyday life that lasts for many years, draining both the carer and the person with dementia physically and mentally.

From the night terrors, sweats and hallucinations that can often accompany the earlier stages of dementia, to the way in which the disease can eventually remove that vital understanding about daytime and night-time, dementia poses many challenges around sleeping for the person with it and those who are caring for them. As dementia progresses the person living with it may sleep more and more, and in the end-of-life stage constant sleeping is not unusual.

A classic sleeping pattern for people with dementia is napping in the daytime and then being wide awake in the evening. This was certainly true of my dad. Throughout much of his dementia his daily routine involved both a mid-morning nap (before lunchtime) and an extended afternoon nap between lunch and teatime. Come the evening, however, he was invariably wide awake and would remain so for many hours.

People with dementia will often nap for the same reasons that anyone else might, so it could be as a result of being very relaxed, becoming bored, or because the room they are in is very warm or sunny. It could be a side-effect of medication, or an indication that earlier activities have tired them out. Personally I always found it very calming to see my father having a peaceful forty winks. The only time I ever worried was when he developed a sudden pattern of excessive sleeping, which in his case was always a sign of an infection brewing.

Dad’s napping never really affected his ability to sleep at night, although over the years some of his GP’s still offered prescriptions for sleeping tablets like the pills were sweeties to be doled out to all residents. Dad had never been a person who went to bed particularly early (despite being a farmer who needed to be up at the crack of dawn) so we requested that the care home staff never put him to bed before 10pm. If he went to bed too early he would be very restless, moving himself around, making loud noises and appearing very distressed. He could easily sleep in his comfy chair earlier in the evening if he needed to, but mostly he would be bright eyed and listening to his music.

From a digestive point of view, it is also very important to monitor bedtimes in relation to eating times. Often as people get older their digestion slows down, and going to bed too early can cause indigestion, leading to pain and discomfort that the person with dementia may not be able to articulate. If that person also has a swallowing problem (dysphagia, which I wrote about here), it becomes even more important to be mindful of their bedtimes. With dysphagia it is vital that the person is kept upright whilst taking anything orally to prevent choking (in our experience a profiling bed was never as effective as a chair and cushions for support). In my dad’s case this advice also extended to a prolonged period after any food or drinks (usually at least 2 hours) to help prevent vomiting, and reduce the chances of aspirating any vomit (which could lead to pneumonia).

There is often a temptation in care homes to put people with dementia to bed early just because it may be more convenient for the running of the home. If a person has been used to going to bed early, or worked shifts, then of course their established sleeping pattern should be respected, but if someone has always gone to bed later, making them revert to early bedtimes, the like of which they may not have experienced since they were a child, is totally unacceptable unless the person themselves wants to change their routine.

The exception of course is when illness strikes, which will naturally change sleeping patterns immensely. During those times bed is often the best place to rest and recuperate, although in my father’s case he had to feel extremely poorly before he would sleep peacefully in his bed without becoming agitated. Sleeping upright in his chair is something that dad had done prior to his dementia when he was chesty, and he retained that ability to sleep restfully in his chair during the numerous chest infections that he had when he was living with dementia.

In dementia’s shifting landscape, sleeping patterns may well come in phases, and they often require huge patience in order to cope with them. Helping someone with dementia to sleep, particularly at night, is about understanding their preferred times and places to sleep, the things that help them get to sleep or the triggers that keep them awake. Do that, and when they are finally catching those z’s, my best advice would be to catch some yourself.

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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Treat others as you would wish to be treated yourself

Ask most people caring for a loved one with dementia what they dread the most, and a common theme will probably be hospital admission. For so many reasons, hospitals and dementia patients are a combination that is fraught with problems, and whilst pockets of good practice do exist in the NHS, far too often the experience that people with dementia and their families have is one characterised by a lack of understanding, poor care and even neglect.

Moving anyone with dementia to a new environment, let alone one that is so alien to them, will inevitably cause problems. People with dementia generally do not react well to any change, and most hospitals are not dementia friendly; they are busy, noisy, imposing places with clinical smells, high-tech equipment and a constant stream of new faces.

If an illness makes hospital admission unavoidable, the person with dementia will often be in a more confused state anyway due to infection, and that, combined with the environment they find themselves in and staff who are so busy that they do not have time to spend with patients, is a powder keg situation. Dementia patients often deteriorate in hospitals; even if the hospital successfully tackles the infection that they were admitted with, pressure sores can develop through lack of turns and regular pad changing, they can lose weight from limited or non-existent feeding of quality food (my father shockingly lost half his body-weight during a 3-month stay in an elderly mentally infirm ward), become dehydrated once they are taken off IV fluids, and their alertness and general cognition can markedly decline, possibly never then returning to its original state once they are discharged.

It is well known that hospital staff are under huge pressure. On the occasions that my father was admitted to hospital with either pneumonia or bladder infections, he very rarely had the same staff member looking after him consistently, staff were grossly over-stretched, and as a family we were spending all day every day with him just to make sure that he was fed, shaved, comforted and had all his needs met. This often also involved us demanding to see doctors or other professionals just to ensure that dad had the assessments he needed in a timely fashion, and that his care was of the same standard as someone who can articulate what they are feeling and needing.

Not only can you legitimately argue that families should not have to do this, the greatest concern is surely for the many people who have no family to speak up for them. Dementia patients deserve the same level of care as any other patient, and in fact often need significant extra attention to ensure that their needs, both physical and emotional, are met, thus giving them the best possible chance of recovery.

So how do you improve the way hospitals treat patients with dementia? Staff training is a huge issue, with staff across all disciplines having very patchy knowledge and understanding of dementia. Specialist environments need to be created that offer reassurance and extra assistance for dementia patients, and there needs to be better co-ordination across departments to ensure that the person receives all the treatment that they require, and has a discharge planned that is appropriate for their needs.

Empathetic and compassionate stimulation is important, as are therapies that engage the person with something that they enjoy. Equally vital to a successful recovery is good nutrition and hydration, which is something I wrote about in more detail here. Freshly prepared, appetising and well-presented food is needed not just for good health, but because of the feel-good factor it provides for a person’s wellbeing. It needs to be remembered that a good meal can be the highlight of someone’s day, and when those days are long and arduous, there is nothing that is more welcome.

Dementia patients often cannot articulate when they are hungry or need help to eat, and when they need assistance, this can often be very time consuming for staff if the person is to be given the quantity of food they want and need. Swallowing problems are also common as dementia progresses, and both the quality and consistency of food and the way in which the person is fed become acutely important – if any of these elements are wrong, the person can aspirate (where something taken orally goes into the lungs instead of the stomach), which can result in a potentially fatal pneumonia.

Some hospitals are becoming more dementia friendly. Taking dementia patients off of acute medical wards and into specialist wards, where they still receive expert clinical care but where staff are specifically trained in dementia, is a step in the right direction. Befriending schemes can provide a lifeline to dementia patients to reduce isolation, increase stimulation and provide non-drug related therapy. Another excellent initiative is the Butterfly Scheme, which is already in use in some hospitals. It is designed to alert all staff to the fact that someone has dementia, and through the training they have received, staff offer a specific five-point targeted response to the Butterfly symbol, enabling them to meet the additional needs of someone with dementia . ‘This is me’ leaflets are also useful in providing background information for staff, although these will only be truly effective if staff have the time to both digest that information and then act on it.

Hospitals provide life-saving treatments every day, and on many occasions the prompt and expert care that my father received saved his life and gave us precious extra years with him, but the worry of having him in hospital was immense, not just from the point of view of whether he would recover or not, but also because of concerns about the treatment and care he would receive whilst he was there. The pureed food he was given was revolting, pressure sores become worse rather than better (even though he was given an air-flow mattress), his agitation (from being in bed, hungry and ignored) would be misinterpreted as pain and inappropriate medication given as a result, he was expected to answer questions and give information that he clearly did not have the cognitive ability to provide, and he endured a constant stream of new faces, noise and confusion, often being moved to different wards very late at night.

I would like to think that the NHS, with so many caring people working for it, can provide a far higher and more consistent level of care for dementia patients across all hospitals in the UK. Most staff want to be facilitated to do their absolute best for their patients, particularly the most vulnerable, people with dementia deserve care that gives them dignity, respect, comfort and a speedy recovery, and families want reassurance and faith that everything that can be done for their loved one is done, and done to an exceptional level.

As my father always said, treat others as you would wish to be treated yourself.

Until next time...

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Singing from the same hymn sheet

Me singing to my dad, July 2011

Improving the quality of life for people with dementia, especially in the more advanced stages of the disease when they may have very limited communication or ability to do anything for themselves, is one of my biggest passions.

Over the many years of my father’s dementia we tried numerous different therapies to improve his wellbeing and engagement, and by far the most successful was music. It helped that he had adored music his whole life, right from when he was a chorister at Cathedral School through to my childhood when his strong, perfectly tuned voice would rise above everyone else’s at Sunday church services. For a family so vociferously against chemical cosh drugs, music was the naturally therapeutic choice for my dad.

When my father went into his first care home, like most families we got him a TV for his room, but very soon afterwards it was broken, a godsend for dad as he no longer had to sit and watch mind-numbing rubbish that he had no concept of. He still watched his favourite sports and old films on the big screen in the communal lounge, but his room became a haven of music thanks to his CD player and all the albums he amassed via Christmas and birthday presents.

Our approach wasn’t without its teething problems. We went through a phase of having to continually remind the staff not to put the radio on, as the CD player was there for dad to listen to his music, not for the younger generation to enjoy the local station blaring out modern pop tunes, but otherwise I can honestly say that the CD player was pretty much the finest thing we ever bought dad. In fact it was used so much that we actually went through three machines in the eight and a half years dad was in care.

When my father’s dementia progressed to the point where he had very little conversational ability, and latterly could say no more than a word or two, he would still listen to songs and say the lyrics at precisely the right time, proving that not only did he still know the words but he knew exactly where they fitted within the song. Dad’s expressions and reactions showed how much joy, comfort and pleasure music brought him, and you cannot ask for more than that when you are caring for someone with dementia.

Seeing the effect music had on dad persuaded me to use my singing training to go into other homes, and in 2011 I did 35 gigs in care homes, all of which had at least some audience members living with dementia. My experiences paint a very mixed picture of how different homes and providers approach music therapy sessions. Some welcomed me with open arms, their staff engaged with my show and as a result supported audience members to gain the maximum from having me there. Others used my arrival to simply dump their residents in chairs around the edge of a dimly lit room, with the hardest of hearing placed the furthest away from me, close the door, and leave me with my audience while they went to have a coffee break.

Despite most relatives wanting extensive activities programmes for their loved ones in care homes, and the availability of external entertainers and specialists to come in and supplement that, sadly it is often an under-funded area. The experience I had is that whilst my shows were very well received, activities organisers were unable to re-book me, or indeed anyone else, as either their budget had been cut or they had to fundraise.

Activities like music, art, exercise and reminiscence are vital for people with dementia, and yet they are neither valued nor supported by many care home operators, including some of the biggest companies in the country. It is often seen as easier to just sit residents in front of a TV and leave them there.

There is also a huge lack of understanding about how something as simple as putting appropriate music on can change the atmosphere amongst residents. It infuriates me when care homes play modern pop music to their residents when they could be playing music that will offer residents the chance to reminisce. Hospitals with agitated patients could use less chemical coshes if they were more innovative with music therapies. On one of my father’s hospital admissions we were fortunate enough to be given a side room with a CD player, and having brought in some of his favourite music, the change in his mood was phenomenal.

Music therapy isn’t just for people in the latter stages of dementia either. I am now involved with the Alzheimer’s Society ‘Singing for the brain’ programme, which is a fantastic initiative that provides a supportive and sociable group where people living with dementia can come with their carer and ‘sing to express, not to impress’. The focus is on joining in, feeling engaged and improving wellbeing, not on auditioning for X Factor!

Seeing the faces of everyone in the group light up with different songs and styles of singing is hugely rewarding. It reminds me so much of the work I did last year, and how groups of sleepy, agitated or incoherent residents were transformed into mini choirs when I started singing songs they loved. Some people even got up and danced, and in one home a relative told me that she had never seen such an amazing atmosphere.

In my view all care homes should provide ‘Singing for the Brain’ type sessions as a mandatory service, and the huge availability of digital music and MP3 players should promote further, more personalised, engagement for residents. I have read really interesting stories of iPod’s being used very successfully in care communities in America, and the UK needs to catch up with these technological advances. Given the fees being paid by care home residents across the country, this should be just the tip of the iceberg in terms of innovation in how therapeutic dementia care is provided.

Until next time...

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Continuity is key

Last week a story hit the headlines about how Jeanette Maitland’s husband Ken, who was living with dementia, had been given 106 different carers during the last year of his life. Mr Maitland, from Aberdeen, had been allocated two carers four times a day to help his wife look after him at home, but instead of regularly seeing familiar faces, the couple were confronted by a stream of new care givers, which would be baffling enough for most people but even more distressing when the person receiving the care is living with dementia.

Whilst the understanding of dementia has improved significantly in the last ten years since my father was diagnosed, the fundamental inability to grasp some of the most basic facts about this disease remain all too prevalent, and the point about continuity of care is one such example.

It cannot be overemphasised just how important it is for people with dementia to receive all, or at least the vast majority of their care, from someone (or a very small group of people) that they know and have clearly formed a bond with. As communication becomes ever more challenging, known and trusted carers become the best chance someone who is living with dementia has of articulating what they are feeling, needing and wanting, and having that care provided in a way that they respond well to.

Familiarity, warmth and trust between a carer and the person they are caring for also helps to remove fear in the most vulnerable people, promotes calm and wellbeing, and provides dignity and respect during the provision of the most sensitive personal care. It can also add some much needed love and laughter into a person’s life in the most difficult times.

In the case of my father, he experienced significant upset when he was admitted to his first nursing home some 8 years ago.  Our involvement as a family played a huge role in helping him to settle into his new environment, but ultimately it was a highly trained and intuitive nurse who spotted how dad responded particularly well to one carer, and then moved that carer onto dad’s unit just so that he could permanently work as his keyworker, that made the greatest difference. This carer became dad’s best friend, and as my father's dementia progressed, he became the voice dad didn’t have, spotting what he wanted and needed in the times we weren’t at the home, and crucially also providing a link between dad and his family during those periods.

Dad’s positivity towards this carer continued until the last time he saw him, two days before dad passed away, and proves how bonds are formed and never broken, no matter how much cognitive impairment exists.

That Mr Maitland was denied the chance to experience how continuity of care could have dramatically improved his wellbeing is shameful. Anyone actively involved in the care of a loved one with dementia quickly comes to appreciate how something as simple as having the same person regularly looking after their relative makes such a tangible difference, not only to the quality of life of the person with dementia but also the peace of mind that you feel as their family.

Sadly care workers are not valued as much as they should be in our society, and as a result it is often a profession where staff retention and longevity of service is at a premium. Mr Maitland’s experience may be an extreme example of how the system failed to provide him with even the slightest continuity of care, but it also represents the severe lack of understanding about just how vital this aspect of care provision is. The people with the skills to deliver such a specialised and personal service should be supported, and actively enabled, to perform their care giving with the same group of patients every day that they are at work.

At some point in the future I will post about the problems faced when you go from having such continuity to losing it, irrevocably. A bit like a divorce that neither party agrees to or wants!

Until next time...

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