Repetition, repetition, repetition

One of the symptoms of dementia that those around the person with dementia find most difficult to cope with is repetition. Families and professionals alike often express frustration, leading onto exasperation, which often ends in irritation and possibly even an argument with the person who has dementia.

Repetition is a very common symptom of dementia. My dad went through a stage of repeating the same questions, and as his communication ability diminished the repetitive questions were replaced by saying the same words or phrases over and over again. To begin with those words or phrases would sometimes bear some correlation to the situation or conversation going on at that time, but as the years went by they became completely random.

The patterns of my dad's repetitive speech often left me wondering what message he was trying to convey to me, and that is arguably one of the most difficult aspects of repetition for the people around an individual with dementia. You desperately want to unravel the meaning behind their words and respond to that with an answer that provides the reassurance they may be looking for, but without being able to move the conversation on the prospect of finding a resolution that gets to the heart of what the person with dementia needs or wants becomes a distant one.

As someone observing a loved one's life with dementia, it is impossible to truly know the impact of repetition on the person who is living with dementia. I would suggest, however, that many of the feelings that a carer is experiencing (frustration, exasperation and irritation) are potentially also being experienced by the person with dementia too. The difficulty for the person with dementia is that they don't necessarily have the ability, either verbally or through physical demonstration (body language or expression), to make those feelings clear. That puts them at a distinct disadvantage to those of us who are family carers or care workers.

It's interesting that as a carer of a person with dementia, the carer's feelings are often seen to be somehow different from the person with dementia, but the emotions that go alongside coping with repetition - as with so many other symptoms of dementia - can be remarkably similar for the person with dementia and those around them, giving us more in common than we often realise.

Developing coping mechanisms is a key attribute for a carer, because so many people simply don't cope well with constant repetition – examples of coping methods include taking a quick ‘time out’ or deep breathing exercises (these may sound trivial, but they do work for some carers). Patience is another key attribute. I’ve never yet seen or experienced a resolution to a person’s constant repetition by losing patience with them. Yes they may have asked what the time is, requested the toilet or questioned when the next mealtime is on 20 occasions already, but getting angry is unlikely to prevent the next 20 requests. Equally, telling the person that they’ve already asked that question or said that statement isn’t likely to help end their repetition because they may very well not remember what they said previously.

Of course it’s easy to say ‘exercise patience’ – repetition can be incredibly mentally draining to both listen to and constantly respond to  – but alongside patience there are other techniques that can be helpful, although I’d stress that as each person with dementia is an individual, what will work well for one person won’t necessarily have an impact with someone else. 

Techniques to try include:

Embedding your response: Persistent questioning about the time can sometimes be resolved by providing a ‘dementia friendly’ clock or similar item, enabling the person with dementia to track time themselves which helps facilitate their independence. Coupling that with a day-by-day board that enables the person to track what is happening when can help with questions about daily events, like mealtimes, whilst good signage can assist with enabling the person to go to the toilet independently without having to ask. However, visual aids only work if the person has good vision and the cognitive ability to absorb what they are seeing, so make sure this is checked – move to audible reminders if hearing is a stronger sense than vision. Likewise, if the person doesn't have the mobility to meet their needs (like going to the toilet), then your help will always be required.

Distraction – Changing the conversation: Some carers successfully use distraction techniques to move the conversation away from whatever the person with dementia is repeating and towards something else. This can work, although sometimes moving away from a topic causing repetition can then mean that wherever you steer the conversation to next will become a topic for repetition.

Distraction - Activity: Introducing an activity, be it something to do with daily living (“Let’s make a cup of tea,” or “Let’s do some housework.”) or a hobby that the person enjoys, can be helpful in taking their mind off whatever the topic is of their repetition. Offering the right activity for the moment is key here, and may need to be something more energetic, like going outside or making the bed, or could be something much more sedate, like reading a book together or singing songs.

What I personally wouldn’t advocate is ignoring the person. Some people use this as a technique in the belief that the person with dementia will simply give up the repetition when they don’t get a response, and by responding you only fuel repetition further – a bit like the parenting technique where you leave the child to self-sooth. However, in relation to dementia I dislike this as a technique because apart from anything else it feels disrespectful. It also does nothing to increase the person’s trust in those around them, doesn’t encourage their independence in any way (even though it may be used in the false belief that it does increase independence), doesn’t help to meet any unmet needs that they may have, and runs the risk of something vital being missed.

The risk, when repetition becomes very monotonous and wearing is that a carer becomes so immersed in coping with it that vital clues are ignored, which might result in an episode of incontinence or not recognizing when something is wrong with the person’s health. When repetition takes the form of answering yes to every question asked, or no to every question asked, it might seem reasonable (and easier) to take those answers at face value, but it may simply be that the person is repeating an answer because that’s their current pattern of repetition, rather than because they really intended to give that answer.

This doesn’t mean that the person with dementia is being untruthful, it’s just how their dementia is manifesting itself at that time. Always be alert that an answer on a key issue, like how a person is feeling in relation to their health, should also be accompanied by the carer observing the person to make sure vital opportunities – for example to spot the deterioration of an infection - aren’t missed.

One final key point about repetition is that it is rarely static indefinitely. What is the sole topic of repetition one week can easily change the next week, and sometimes repetition stops as suddenly as it began, in the same way that many dementia symptoms come and go. When all else fails, responding with soothing kindness will at least ensure that you have tried to alleviate any distress being felt, and that you have appreciated the key point that the person with dementia may be feeling just as unhappy about their repetition as you are.

Until next time...

You can follow me on Twitter: @bethyb1886

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A helping hand

When a loved one is living with dementia, it is inevitable that a time will come when they will need additional help and support. A person with dementia may be very resistant to any intervention from any individual, and who could blame them - 'help', however well-meaning, often results in taking over from the person with dementia and can be very disempowering, especially for a previously very independent person. Alternatively your loved one may be willing to accept help, but only want it from a particular person, which can put a huge strain on one individual.

Overcoming problems around how to provide help and support, and especially difficulties completing essential tasks like washing, dressing, eating etc, is something that huge numbers of family carers struggle with, and can even baffle professional care workers. If time is short, and the individual living with dementia is determined that what the person who is supporting them feels needs to happen isn't going to happen, it can become a very frustrating battleground for everyone.

Alleviating those tensions can be difficult. As one family carer said to me after reading my 'Troubleshooting Checklist' blog post: "How do you cope when someone is unwilling or unable to cooperate with these tasks? Our routine gets harder every day." The advice I gave that person is the inspiration behind this blog post, largely because I know from the correspondence and conversations I have had that that person is far from alone in experiencing these problems.

There are lots of things you can do to try and improve the communication and mutual understanding needed to avoid battleground situations over every day necessities. Lots of carers – be they family carers or professional care workers - often get locked into a very task-based day, and naturally take over doing tasks even when the person with dementia may be able to do some or all of these things themselves. I was guilty of this with my dad in the early years of his dementia - it is an incredibly easy pattern to fall into.

Often it's just quicker and easier to do things for a person than support them to be independent. However, for anyone, and particularly a very independent person, this could be like red-rag to a bull. Put yourself in the shoes of the person with dementia - looking at it from their perspective it seems very controlling and disempowering for you to just take over. 

Maintaining skills is a difficult balancing act. If a person is going to put themselves in danger or do something wholly inappropriate then some measure of intervention will be needed. Judging that measure, however, can only come from understanding the individual - through communication, body language, previous history, observation etc - anything that tells you what their capabilities are and where the points are that you may need to intervene. 

Of course dementia is a constantly changing landscape, and abilities and the motivation to do things will fluctuate and most likely decline over months and years. The frustration the person with dementia is likely to be feeling during this decline cannot be overestimated, and any intervention you make needs to be very sensitively handled. There may be specific trigger points when you and the person you are supporting upset each other. It might be helpful for you to note these and see if a pattern emerges.

Once you've worked out what is triggering times of discord, you may be able to identify factors that you can change. For example, the environment you are in may be contributing to difficulties. A particular room, object, or sensory experience could be a problem. The routine you are using may also be problematic, even if it's a routine that has been in place for a long time. Or the problems may be down to a breakdown in communication.

An example to illustrate this:

You are helping a loved one to dress. Your loved one has always got dressed in the bathroom after their morning wash. Your loved one is now resistant to dressing but is struggling to communicate why in a way that you can understand. Examples of possible problems include:

1)    Looking at the bath/shower, your loved one is associating the bathroom with getting undressed for washing – they simply cannot understand why you would want them to put clothes on, rather than take them off.

2)    Your loved one doesn't recall having a wash so cannot understand why clothes should be going back on.

3)    Your loved one opened their bowels prior to having their wash, there is a lingering smell and they don't want to dress because the smell is suggesting to them that they need to wash.

4)    They haven’t completed their pre-dressing regime in the way that they would want to – IE: don’t feel dry enough, want to apply a body lotion, or would like to do their hair or make up before getting dressed.

5)    In your small bathroom there isn't enough room for you and your loved one to manoeuvre to help them get dressed, this is making the space claustrophobic, possibly too hot, and you are getting in each other's way, causing mutual frustration.

All of the problems described above are centred around association and memory. The environment you are in is causing a negative association. Try changing the established routine and moving to another room to dress – ensuring that room is warm enough. The bedroom, with an open wardrobe and different outfits to choose may help to demonstrate that it's time to get dressed.

 

Of course the above is just one example – I could write up many, many more – every individual situation is going to be slightly different and require a different approach. However, a general checklist for multiple situations would include (in no particular order):

1)    Think about the room(s) where you are trying to help the person (do they feel safe/comfortable?).

2)    Don't ignore sensory barriers - noise can cause confusion, smells and the visual landscape can give mixed messages.

3)    Experiment with routine if the current one is not working.

4)    Be mindful of timing - the time you chose to do something may not be the time that the person you are supporting wants to do it. If schedule is vitally important, try to agree the schedule together and have a dementia friendly clock to help orientate the person and avoid conflict over what time it is.

5)    How much are you involving the person in tasks - would they like to/could they do more? Or would they like something done differently?

6)    Think about how you are communicating - is it appropriate, can it be understood, do you need to change how you are communicating?

7)    Use clear clues to indicate what the person needs to be concentrating on - IE: open the wardrobe to choose clothes to wear, set the table before a meal, take towels and washing products to the bathroom in readiness for a bath/shower, collect up coats, hats and shoes ready to go out.

8)    Think about how you are helping the person, are there any particular trigger points for upset (observe/document and you may see a pattern emerge that you can change).

9)    If someone else is available to help (another family member, friend, care worker etc), find out from the person with dementia what their preferences are. Also consider if you need extra help in certain situations (help with moving and handing etc), and if certain tasks should be completed by someone else while you take a back seat. Be particularly mindful of cross-gender issues, dignity and privacy.

10) Remember that what needs to be done (like getting dressed) doesn't exist in isolation from other things. For example, feeling unwell, being in pain etc are going to have a huge bearing on how someone concentrates on what needs to be done, their willingness to help, and the movement and mobility they have. A person with dementia may not be able to articulate how other illnesses or pain are affecting them, so as a carer you need to be a bit of a detective.

Taking the person-centred, holistic approach described above should help to alleviate most issues around offering help and support to a person with dementia, but like everything in dementia care there are no guarantees and the role of a carer is likely to be constant trial and error. As ever, patience and empathy are vital. I'm not sure it ever gets easier, but what I can say is that with time you become more perceptive and an infinitely more effective detective.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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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

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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

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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...

You can follow me on Twitter: @bethyb1886

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

Understanding aggression

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next time...

You can follow me on Twitter: @bethyb1886

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Let's talk about dementia - Frustrations

Welcome to the fourth 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 4 - The frustrations of living with dementia

Living with dementia, especially when you have awareness of what is happening to you, is inherently a very frustrating experience.

You want to get on and do things, say things, go to places and meet people. Yet your brain can’t keep up, bits of the jigsaw of daily living are missing, and you feel limited by being unable to remember the how, what or why of things you previously accomplished without hesitation.

It's a heavy burden, but it would be a lot easier to bear if it didn’t come with the most irritating aspect of living with dementia: dealing with people who just don’t understand. The shop assistant or fellow customer who is impatient for you to remember your pin number, or not hesitate trying to find your change. The passer by who won't stop to help you find your way, or the person on the phone from the utility company who is demanding information that you cannot recall.

Talking to a person who has dementia should be about dialogue on their terms, not on yours. It should never be about adding to their frustrations; it should be a conversation that brings calm reassurance, comfort and sees them as a person, not a disease.

Next post on 23 May 2013.
Until then...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook