How dementia and personality interact

We talk A LOT in dementia care about how dementia changes a person. Often it's distilled down into very negative language, and bracketed as 'challenging behaviour' (a phrase I dislike immensely). Yet, the spectrum of change is immense, very personal to each individual, and definitely worthy of far greater exploration and understanding.

Part of the reason that I think so many people struggle with the personality changes associated with dementia is you can't 'see' them in the way you can see a physical problem. Whilst physical changes can be very distressing - for example if a person becomes immobile, loses weight, loses teeth, wears a catheter or needs help to eat - we associate that type of change with a need to care for that person, helping to minimise any discomfort and keep them as well as possible.

Personality changes in the general discourse of life are bracketed under the 'mental health' banner, and as such have an additional stigma attached to them, before you even add in dementia as a factor. We also make a lot of assumptions when associating personality changes with dementia, most notably:

•   That the person with dementia has never experienced this type of change before. Are we really sure that in their whole life course to this point that they haven't had times when they've been emotional, depressed or angry? They may have concealed these feelings from others, even people very close to them. The difference may be that now they’ve developed dementia, they find it harder to conceal these elements of their personality.
 

•   That every person who develops dementia was a 'nice' person before they developed dementia. It may be unpalatable to admit it but we are all different, and some people just don't get on with other people of contrasting personalities no matter how much we might want them too - be they other residents in a care home, health and social care staff or even their own family. That, as they say, is life.

Personality changes can be temporary or permanent for a person with dementia, depending upon  the damage to the person's brain (for example a stroke may mean an instant change for a person), the type of dementia they have (for example people with a form of frontotemporal dementia may have more pronounced personality changes), and other factors such as who is around the person (the company of some individuals may trigger different reactions), their environment, other health conditions, side-effects of medications, and even issues like changes in the seasons (increased darkness in winter for example) or memories of certain times of the year, events, people or places.

 

Personality changes encompass as many differences as you can imagine. Examples include:

•    A previously relaxed person becoming very anxious or angry (or vice-versa).

•    A previously more detached person becoming much more emotional (or vice-versa).

•    A previously tough person becoming a lot 'softer' and showing their feelings more (or vice-versa) - This was true for my dad.

•    A previously private person becoming more of an exhibitionist (or vice-versa).

•    A previously tolerant person becoming intolerant (or vice-versa).

You may recognise someone you love, or yourself, as having undergone such a change, even a more subtle one, as a result of developing dementia. What I think those of us without dementia, and particularly family carers and health and social care professionals, need to understand is that:
 

•   Change is ok, even changes that we perceive as difficult. The more we worry, try to correct, mourn and yearn for the person 'as they were' the harder we make it for the person with dementia and ourselves. Adjustment is hard, I know that only too well, but failure to adjust is harder still.

•   If we can adapt our approach and interactions with the person, we have the ability to offer the mental equivalent of what I wrote about above in relation to physical changes, namely to; "Care for that person, helping to minimise any discomfort and keep them as well as possible". Examples of how to do this are through person-centred care, life-story work, reablement, occupation, sensory therapies (including touch), making spiritual connections, music, our approach to personal care, and even by something as simple as modifying the way we communicate.

•   Don't automatically view medication as the answer - often the first resort for any 'negative' personality changes is to assume that the person is depressed and put them onto anti-depressants. Medication may be suitable in a few situations, but generally the answer is greater understanding, care and support on the part of those around the person. Again, it goes back to the points about adjustment and adaptation.

Every day can, and often is, very different. Sometimes the changes in a person's personality may be more, or less, pronounced. If they become less pronounced, you may feel like the person is 'returning to their old self', only to see the 'reversal' of that the next day, week or month. It can seem cruel, and is a fertile breeding ground for the 'blame game', where the person with dementia, or a carer or family member, feels such changes very personally. If changes can be linked to a particular aspect of the person's life, then mitigating against that trigger could obviously be very beneficial, but sometimes there is no apparent 'reason' apart from the unpredictability of dementia.

 

During my dad's latter years with dementia I saw him cry more than I had in all of the years prior to that. I saw anger and anxiety too, which I wouldn't have associated with my dad prior to his dementia. With the power of hindsight, however, I can also see reasons for these differences in him, ways in which I, and others, may have contributed to them, not to mention environments like hospitals and care homes, and some medication he was given.

 

That's not to in any way exclude how vascular dementia affected my dad's brain - so much of what he experienced was, from the perspective of the physical changes in his brain, beyond our control. Coming to terms with that, whilst trying to provide the very best care and support you can, is a balancing act that is as fine as any personality change can be.

 

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

 

Harnessing the power of observation

I feel very strongly that one of the most important attributes anyone providing care and support to a person with dementia can have is the ability to observe.

In our helter-skelter, multi-tasking lives it’s easy to lose the quietly reflective quality of observation. Observation cannot be rushed, cannot be combined with anything else if it is to be truly effective, isn’t remotely technological, and may seem both outdated and old fashioned. Surely we need to be stepping in and ‘doing things’ to be providing optimum care and support – right?

Wrong! When you’re providing care and support for a person with dementia, whether you’re a family carer or a care worker, stepping in may well be the worst thing you can do. Of course we need to protect a person with dementia who might walk in front of a car, or burn themselves on the cooker, but in the vast majority of day-to-day circumstances talking a step back can be infinitely more helpful than getting involved.

One of the biggest problems people caring for a person with dementia often site is difficulties understanding the person. Those difficulties mostly arise because of limited or confusing verbal communication – the person with dementia is trying to articulate something, but the person listening to them cannot understand what they need or want.

Often the person providing support will then step in, make assumptions, and undertake an action that they think is needed. Sometimes they may have made exactly the right call, particularly if they are a family carer who has deep personal knowledge of their loved one or a care worker who has built up a really positive rapport with the person, but on other occasions the situation can rapidly unravel.

What then results is that the person with dementia doesn’t have their needs met (which is mistaken for them displaying ‘challenging behaviour’, something I wrote about here), and a vicious circle of frustration ensues for all concerned. With more finely tuned observation skills, it’s possible that such an unhappy episode could have been avoided.

Everyone who is providing care and support for a person with dementia wants to have that deep personal knowledge of the family carer, or the positive rapport of the studious care worker that I describe above. To get those levels of knowledge and rapport, however, involves many different skills, of which observation is a crucial one. 

Granted the family carer often has the benefit of years, if not a lifetime of knowledge about their loved one which, incidentally, is why family carers are so immensely valuable in society, but someone without that knowledge, like a health or care professional, can help themselves and therefore the person with dementia just by understanding the power of observation and interpreting the learning that comes from it.

One of the most widely recognised methods for enhancing dementia care, ‘Dementia Care Mapping’ from the University of Bradford, has observation as a founding principle. In CQC inspections, the 'SOFI tool’ is widely used – this was also developed by the University of Bradford and again is founded on observation. Meanwhile, observation features in the 10 facilitation skills that is part of the ‘Great Interactions’ training given to the staff employed by one of my consultancy clients, MacIntyre. 

So, far from being outdated or irrelevant, observation is actually a vital tool. It literally opens your eyes to what is really happening with a person, and is invaluable when a person’s dementia progresses and you need even more finely tuned skills to help provide them with optimum care and support. The reason it doesn’t feature in care settings as standard practice is that it is time consuming.

We all know how over-stretched social care staff are, and many providers simply do not staff their shifts to allow care workers to take time to observe and reflect upon what they are seeing. Budgetary constraints really are the enemy of observation, as is the need to ‘look busy’. You simply cannot ‘look busy’ if you are observing a person carefully and accurately.

What you are likely to learn from observation is immense, however. Good observation skills can tell you how a person is feeling, what they want or need and how you can best respond to them. It can also give you clues to their personality, their likes and dislikes, and the ways in which you can seamlessly integrate yourself into their life without being obtrusive, interfering and controlling. 

Observation is fantastic at promoting independence, but the very essence of good observation is about watching rather than doing. We are far too fond of doing things to or for people, without giving them the space and time to potentially accomplish those tasks themselves, or indeed go some way towards accomplishing them.

What observation isn’t is the tool of those who want to stare at a person with dementia. People with dementia deserve dignity and respect, not to be treated like exhibits in a zoo.  Observation should always be discreet, and with a clear objective of improving your understanding of the person with dementia to optimise their care and support.

Equally, observation isn’t the tool of the individual who doesn’t want to help a person with dementia who is in distress or struggling to accomplish something and becoming rapidly more frustrated and unhappy. It should never, ever, be used as a weapon of torture, where you are deliberately leaving the person to ‘get on with it’ regardless of whether they are able to do that or not. 

Making that judgement call is largely about the personality of a person in a care or support role. Those who observe most effectively are kind, compassionate individuals who instinctively know when to observe, how to reflect on that observation, and crucially when to intervene.  To some extent that judgement is also influenced by the culture of any organisation that person is working for. If the culture of the organisation encourages its workforce to observe, learn, reflect and adapt, and recruits workers with the values I outlined above, then observation becomes a regular, seamless part of the care and support being provided. 

What applies across the board, however, is that without observation a person with dementia will never be truly understood by those around them, their care will not be person-centred, and they will not have the freedom to express themselves or exercise their independence. That, I’m sure we could all agree, isn’t a life anyone would choose, so next time you’re with a person who has dementia think about how effective your observation skills really are.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

A precious gift

I've often thought about what the most precious gift is that you could give a person with dementia in the absence of a cure. I've written before about the importance of love, but I suspect that if I asked a cross-section of people what they think the most precious gift would be, money would be a popular answer.

Unlimited funds would give the person with dementia the chance to do all of the things that they’ve wanted to do, the ultimate bucket list. Of course money can buy you many things – amazing experiences, expert care, a lavish lifestyle and the best of everything – but wealth of that magnitude is the preserve of a select few. Most of us don’t have vast sums to gift to others or have an inexhaustible stash of cash put aside to spend on ourselves.

In my view, giving your time is a more precious gift than money and it’s inclusive; we can all give our time to a person with dementia and it doesn't cost anything. Most people hugely underestimate the difference that can be made by giving their time, not realizing that it is a gift that forms the cornerstone of quality of life – without it every other attempt to enable a person to live well with dementia is likely to fail.

Many people have reported that when they were diagnosed with a type of dementia they went through a period of mourning the fact that dementia, being a terminal disease, is likely to cut their life short. Losing years off of your life is cruel in a way that words cannot do justice to, but perhaps even more cruel is being denied the time of those around you - people who may well outlive you and yet are not willing to give you the time of day. 

A simple 'Hello my name is' as epitomized by the fantastic campaign created by Dr Kate Granger is too much for some people to manage, and yet how long does such an introduction honestly take? In our lives we've become too busy to stop and realize the gift of time, and in care settings, we’ve become too task orientated, wanting to get those boxes ticked as speedily as possible.

Your time is such a great gift to give a person you are caring for because it enables so many other amazing things to happen:

• It makes choice REAL. Giving a person with dementia time to choose between different outfits, foods, drinks, personal care options or things to do gives them ownership over what their day will be like. Rushing them because you don’t have time to allow them to think or express their thoughts takes away that choice. Giving them time also allows you to make suggestions if they are struggling with choices and support them in making their choice.

• It enables communication. As a person’s dementia advances, they will need more time to communicate with you and to understand what you are trying to communicate to them. Not giving them your time is going to stifle that communication and they will lose their communication skills much more rapidly.

• It deals with challenges. Dementia is tough to live with – anyone with dementia will tell you that. Not having the time of the people who are supporting you makes it a great deal more challenging because your memory recall will be rushed, you will struggle to follow what is happening around you, and you may begin to feel that things are happening to you, not with you. All of that leads to the common elements of ‘behaviour that challenges’. Being given more time to communicate, understand and participate means that your needs are more likely to be met.

• It supports emotions. Bottling up emotions can only lead to emotional outbursts that fuel ‘behaviour that challenges’. Giving someone your time to express their fears, anger, sadness, frustration and bewilderment isn’t easy, but by doing that you are likely to also bring about the expression of more positive emotions; happiness, contentment, peace, hope and possibly even some cheeky fun. 

As a general rule, everything that feeds into person-centred care results from giving someone your time. Everything that contributes to ‘behaviour that challenges’ generally results from not giving a person your time. That is why giving your time is such a precious gift, and why I will never regret giving the countless hours of my teen and twenty-something years to my dad. Even when that time was spent in silence, it was time well spent.

 

Giving someone with dementia your time is a gift that gives something back. You will learn from the conversation that will be created, the body language that will be demonstrated or the experience you will have in that moment with that person. The majority of what I’ve learnt about dementia has come from giving my dad, and other people living with dementia, my time. In return they've given me what I share with you on this blog. If nothing else, I hope that inspires you to give someone you know who is living with dementia some of your time.

Until my next blog post...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Getting to the heart of unmet needs

Interpreting what someone with advancing dementia needs can often feel like a bit of a guessing game. If the person with dementia is struggling to articulate their needs and wishes in a way that the intended recipient of their communication is used to, both individuals can be left feeling baffled by the ‘call’ and the ‘response’, or lack of it. The person with dementia becomes more frustrated as they struggle to articulate and can start to feel ignored, while the interpreter may be guessing what is needed, getting it wrong and causing more distress.

It is a situation that is often accompanied by the best of intentions on both sides and feelings of uselessness or guilt for one or both individuals at the breakdown of their understanding.  It’s usually neither person’s fault that they are misunderstanding, but the associated human emotions are likely to produce one of the most hotly discussed topics in dementia care: 'behaviour that challenges', otherwise know as 'challenging behaviour'.

In the above example, both parties are feeling challenged by the other, and both are potentially going to react badly. Shocking though the idea might be, those without dementia can be just as challenged and challenging to deal with as the person with dementia, so don’t run away with the idea that this is a one-sided challenge focused solely to the person with dementia because clearly it isn’t.

Dig a little deeper, however, and see beyond the raised voices, gesticulation, angry advances, tears or complete meltdown and you will see something far less confrontational – an unmet need. I guarantee you that behind every ‘behaviour’ that is labelled as ‘challenging’ there is an unmet need. After all, behaviours are effectively reactions to circumstances.

In the example above the interpreter/carer is challenged by the lack of clear instruction. Their behaviour may include getting irritated, impatient or upset.

For the person with dementia, they are challenged by a) the fact that their dementia is standing in the way of expressing themselves in the way that they want to and b) that the person they are communicating with cannot interpret more effectively. Their behaviour may also include getting irritated, impatient or upset.

The difference between the two? There is a tendency to label people with dementia, seeing their deficiencies and reactions in a more negative light that those of the person without dementia. Fair? No. True? Often yes.

Trying to avoid this potentially inflammatory situation is vital. Think about the person with dementia:

1)      What are their needs?

2)      How can those needs be met?

3)      Can we always meet them?

4)      How do we prevent the person having unmet needs in the future?

Implementing  points 1, 2  and 4 requires spending time with the person.

• Providing person-centred care.
• Understanding their likes and dislikes.
• Finding way to connect with them to communicate in a way that they can positively participate in.
• Being flexible.
• Keeping calm and being compassionate.

I could go on, but basically simple, transferable skills that benefit both the person with dementia and the person caring/interpreting for them.

Addressing point 3 is more difficult. You’d like to think that you can always meet someone’s need, but sadly that isn’t always the case. If their need is to be free of their dementia, we currently cannot cure them. The best we can do is to help them to live well with dementia, which may be a compromise that they can live with. If it isn’t and they want your help to pursue, for example, assisted dying, then clearly you cannot meet that need under current UK law.

I have heard such needs expressed, and expressed very forcefully amongst people who are living with dementia, but they aren’t the norm. For most people a need will be for a hug, a drink, a favourite meal, a bath, pain relief, comfort, a change of environment, something to occupy them or to be accompanied on a walk. Simple things you might think, so why are they even unmet needs?

Not having enough time is probably be the number one reason why a lot of needs never get met. Family carers and professionals alike have a workload that generally outstrips the number of hours in the day. Understandably the person with dementia may not recognise this or associate that mountain of tasks with why their current need isn’t being met.

Thus the person with dementia gets frustrated, and potentially so does the person providing care – both caught up with challenges of their own, both feeling challenged by the other, and both capable of behaviour that the other may object to. The only difference here is that the person providing the care has the ability, thanks to an undamaged brain, to recognise the unmet needs of the person with dementia. The same isn’t true in reverse.

So the next time you feel challenged by a person with dementia, remember that you are also likely to be very challenging to them. Turn that challenge on its head and challenge yourself to work out what they might be needing and how you could support them to ensure that need is met.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Amour

There is something universal about the language of love. Across the world we may have many different words for it but the meaning remains the same, and most importantly of all the endless ways of demonstrating it transcend barriers. There isn't a word that can truly convey the beauty or perfection of love.

Towards the end of 2013 I did a radio interview where the presenter repeatedly quizzed me about why I chose to care for my father instead of going to university and doing all the 'normal' things that people in their teens and twenties do. My very repetitive reply was that he was my dad and I loved him.

It was a simple sentiment, and I honestly felt no need to be more expressive. Yet clearly my thought processes, emotions and feelings were somewhat lost on the presenter, who seemed utterly baffled by what I was trying to convey, so much so that he rephrased his question on several occasions.

Is it really so difficult to understand that you would care for a loved one because they are just that, a loved one? The materialism of life, and the desire to climb the greasy pole to facilitate that materialism that is educated into our children at ever younger ages, didn't pass me by, it just never interested me. 

Why? Because some things are more important. A person is more precious than any 'thing' you could buy or have, and the feelings a person can elicit in those who know them are more powerful than any 'thing' could hope to emulate. I never weighted up the option of a university education and the potential for a high-flying career against my dad's needs. Maybe that makes me very odd, but I know I'm not the only person who would have acted in this way.

Millions of family carers do what I did, some do much more, others less, but I would suggest most do what they do because of love. For some it will be duty and they will feel burden not love. For others it may be a situation of convenience or dictated by a financial motivation. But for the vast majority it will be unconditional, selfless love.

Wordsmiths far more illustrious than I have tried to explain what love is, but as I said earlier, my personal view is that it goes beyond words. It's actionable rather than explainable. You may think the greatest manifestations of it come from major life-changing moments like meeting your partner, marriage or the birth of a child, but as many a carer could tell you, it can be far more subtle everyday moments.

Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.

Saying those three little words was a verbal expression of my feelings to a man who often never responded. But during the moments when he did respond, and jumbled words along the lines of “Love you too” came out of his mouth, it was like magic. Most days we settled for much more subtle expression - a squeeze of the hand, singing a line in a song, our eyes meeting or a reciprocated smile.

Really simple everyday gestures that ooze love are amazing, and people with advanced dementia can have a real advantage over people without dementia in those situations, since they rely so much less on words and much more on action, however subtle it might be. If you as the recipient aren't alert to those moments they may well pass you by. If anything should motivate you to be more observant then that is it - believe me, it’s worth it.

All the things you do as a carer, from the simple to the complex, from the advocacy to the laundry, the shopping to supporting eating and drinking, all of those contain subtle moments that show your love. Moreover, during those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through. Perhaps that is why the theme of love, of being loved and feeling love, feature so prominently at most funerals - in the toughest times, love can pull you though when you feel you cannot give any more or go on being.

After that radio interview, I thought about what might have prompted the presenter’s line of questioning, and the persistence he showed in trying to elicit a different response out of me. Perhaps university was the best time of his life and he felt I'd missed out. Perhaps he thought the lack of a career and the financial security that could have come from that had deprived me of opportunities to see and do things that have now passed me by.

Or maybe he had just never been a carer. Or lost a parent he loved. For anyone who has, I think my motivation for doing what I did would be very clear. Of course the great beauty of life lies in the fact that we all take our own path, for better or worse, and what was right for me wouldn't be right for everyone.

Finding love, expressing love and appreciating the many different ways in which love can manifest itself is the greatest joy life can give you. Caring for my father was a privilege and a blessing that I wished had never ended. It was borne though love, sustained though love and lives on though my work, which incidentally I also love! The joy of amour is truly a wonderful thing.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Being a pain detective

One of the questions I’m asked a lot in relation to dementia care is around how we find out if someone is in pain. In advanced dementia, when potentially a person cannot articulate clearly if they are in pain, and if they are, where that pain is located, it can be really difficult for those caring for them to ensure that they have the care they need.

We experienced examples of this with my dad. When he was first diagnosed with vascular dementia he was still walking and talking and generally getting into various scrapes. He had a few trips to A&E to be patched up when he fell, including one occasion when he split a blood vessel in his head and had to have emergency staples to close the wound (and when I say emergency I mean that there was no time for local anaesthetic – dad didn’t even flinch).

He was becoming increasing unsteady on his feet and aside from the effect dementia was having on his body, we also knew that there was an unrelated physical cause: Dad’s knee was gradually wearing away - he had been due a knee replacement operation for many years. Eventually he became unable to articulate when his knee was particularly painful or ask for pain relief, and with the risk posed by general anaesthetic he wasn’t suitable for the replacement operation.

It became a ‘guessing game’ to work out when he needed pain relief. On the one hand the nurses looking after him felt he was more likely to need it when he was walking (which he frequently did and couldn’t be dissuaded from), but we also knew that for many years previously dad had often complained about his knee more when he did nothing and it began to ‘seize up’ – hence often being restless in bed.

My dad was never one to make a fuss or take medication unless absolutely necessary (indigestion remedies and throat pastels aside!) and that didn’t change when he was living with dementia. He would dismiss any suggestion that he was struggling with his knee or that walking had become painful, then one day he just stopped walking – we put it down to the knee finally giving up and potentially his brain also giving up on trying to walk.

Of course pain relief problems don’t just exist in relation to joints. Dad would develop bladder infections: Anyone who’s had a UTI will know that they can be very painful, and their effects can rapidly escalate if a person is left in a soiled incontinence pad (see my blog post on incontinence here). Dad would sometimes hold his head – did that mean he had a headache? The atmosphere in his care home was often very oppressive, and occasionally family members would have headaches whilst visiting dad, so it wasn’t inconceivable that he may have one too. When dad became unwell with upper respiratory infections he was often given paracetamol, mostly to control his temperature, but it is highly likely that he was also suffering with a sore throat and possibly ear or sinus pain too; we never knew if his low dose of paracetamol was enough to give him relief from all of his symptoms.

However, perhaps the most startling example of the ‘guessing game’ relating to dad’s pain management came during one particular inpatient experience. Dad was in hospital for pneumonia and had recovered quite well from initially being very ill. The ward staff were used to dad being quiet, but as he began to feel better he became more vocal. On routinely checking dad’s notes we noticed he’d been written up for morphine and was being given other pain medication. We asked why, and were told that as he was making so much noise he must be in pain.

We pointed out that dad was most likely hungry. We suggested giving him some food (something hospital staff were generally very reluctant to do due to his swallowing problem). Unsurprisingly, once his tummy was full, dad was contented. The noise he was making was the only way he knew to articulate his hunger, which only goes to prove how easy it is to misinterpret what someone with dementia is trying to alert you to when they are unable to communicate that with clear conversation.

The key to understanding when someone with dementia is in pain is often down to knowledge of the person. If they can speak to you clearly and concisely that’s great, and certainly in the earlier stages of dementia that should be possible, but one of the problems we encountered with my dad was the differences that developed between what he said and what he meant.

So for example, someone can say they are not in pain when they actually are. They aren’t trying to deliberately mislead you; they may simply not understand the question, be unable to find the words to reply accurately, or indeed may not want to be a burden or ‘put you to any trouble’. They may not recognise a feeling they have as a pain, or could become confused about what is meant by the word pain.

The key to being a good pain detective is multifaceted. You need to understand the person’s history – do they have any known conditions or problems that would suggest that they could be in pain? Have there been any recent incidents or infections that could be causing pain, or is there any possibility that there could be but you don’t know about them? Has their behaviour pattern changed? Have you studied their expressions and body language?

The last two points are especially important when you are trying to detect pain. If you are examining the person, watch them closely to see if they behave unusually (that is unusually for them), or produce facial expressions or other body language that isn’t usual for them. Holding their hand whilst doing a physical examination may produce involuntary movements from them that suggest pain in the area you are examining.

It’s important never to assume someone is in pain, but also not to assume they aren’t if anything about their movement, mood, interaction or general health and wellbeing has changed. People have been known to continue moving when they have a broken bone and for that broken bone to go unnoticed as a result. It’s also important not to overmedicate, or assume that palliative pain relief is needed when any doubt exists as to whether someone is nearing the end of their life.

The side effects of any pain relief medication also need to be taken into account if other changes in a person become evident during the time they are receiving this medication. Anything that is likely to make someone drowsy or upset their stomach will mean they require close supervision. Medication should also be regularly reviewed to see if it is still necessary; in my view it is poor practice to simply leave a person on a medication unless there is a clear need for that medication.

We should never lose sight of the fact that just because someone is living with dementia it doesn’t mean that they don’t feel physical pain. Not being able to articulate something doesn’t mean you don’t feel it and aren’t longing for someone to make that pain go away. Our role is to help people with dementia to have the best quality of life possible, and minimising physical pain is a big part of that.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Turning the air blue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook