People with dementia often display recurring behaviour that we find hard to understand, but the first common mistake is to transfer onto them our own logic and way of thinking.
Never forget that dementia is a condition characterised by the impairment of brain functions, including language, memory, perception, personality and cognitive skills.
Dementia can lead to a loss of understanding, rationality, social skills, and normal emotional reactions. This is why we must not make the error of judging their actions according to our own logic because their actions have a ‘logic’ of their own.
I have learned during my career that it’s very important to spend time observing the behaviour of a dementia patient in order to understand the cause. By observing their behaviour and grasping what causes it, we might be able to restore calm and happiness to their routine as the examples below, taken from my experience as a carer, aim to illustrate. The names of the patients in this article have been changed to protect their privacy.
Aggression in dementia patients
People with dementia are often aggressive to varying degrees, the aggression can be verbal, physical or both. What carers and other people looking after them must not forget is that they don’t mean to be violent and they’re not aware of being so.
The aggressive behaviour never occurs without reason. People with dementia don’t want to manipulate or hurt others, in fact they’re actually trying to say something important to them. Something they’re unable to put into words as their speech function is often impaired.
Usually the violence is a means to try to attract our attention to a crucial need of theirs which we haven’t noticed. Again, this is unsurprising as it’s very difficult for people surrounding the dementia person to grasp their evolving needs and wishes. Despite the difficulty in understanding the condition, I would urge always adopting a person-centred approach. We must therefore find out what is triggering the aggressiveness, or the outburst of anger, so as to eliminate this trigger which in turn will eliminate the unruly behaviour.
How I tackled Julie's aggression
Julie had had a long history of aggressive behaviour when I took over her care. As a bed-bound client, she tended to pinch and punch every time someone got near her. After monitoring her actions for a few days, I noticed that her painkillers were administered to her by her husband at irregular times. I knew she was in a lot of pain and suggested giving the tablets the same time every day, leaving a six-hour gap in between doses, as had originally been prescribed by her GP.
As soon as the pain management became regular and more effective, the aggression was reduced significantly. This gave me the chance to meet the real Julie, a lovely older lady and devoted wife, mother, and grandmother who would never hurt others with words or actions.
Exit behaviour in people with dementia
I first met ‘exit behaviour’ – a typical way of expressing fear, confusion and disorientation on the part of people living with dementia – when Malcolm arrived into the overnight respite cottage I used to work at.
How I solved Malcolm's exit behaviour
On the day of admission, I thought we were prepared for everything as the ‘patient assessment’ and the ‘person-centred care plan’ gave us as much information as we needed to be able to give the best possible care for him. But unfortunately, carers must think beyond what’s written on paper. I find that empirical evidence is the best to fully support people with dementia.
We knew that Malcolm might be restless, trying to fix this and that, and that he was particularly interested in cars and their engines as he used to be a mechanical engineer. We also knew that what he said didn’t always make sense as his speech became slurred and his thoughts were sometimes incoherent. But communication in his case could be complemented effectively by non-verbal elements such as gestures and facial expressions.
People with dementia can be unpredictable
When I first stayed with Malcolm and other three clients also suffering from dementia, he was kept busy initially by exploring the house, even though he constantly wandered in and out of rooms, the bathroom and the kitchen.
Then he suddenly seemed to change his mind and walked to the front door which he desperately tried to open, unsuccessfully. The fact that he could not get out caused him to be even more agitated, restless and confused, which meant that I had to find a quick solution.
Finding the key to Malcolm’s problem
Those caring for people with dementia must be constantly vigilant as their behaviour might change in unexpected ways and it’s best to understand the causes of these changes as soon as possible. Dementia carers, whether they are professionals or simply friends and relatives, must be creative in finding a solution to the problem. It is only by thinking carefully and finding a tailored response, no matter how unusual it might first appear to us, is usually the only way to help the person with dementia feel reassured and to re-establish calm.
We must communicate to the person with dementia that we acknowledge his/her problem (no matter how odd it seems to us)
In Malcolm’s instance, I remembered we kept a ‘staff only’ sign that we could place on the door from the inside, this strategy worked with most of the people trying the ‘exit’, but it was of no use with Malcolm. Eventually, I gave him a bunch of keys – none of them fitted the lock, of course – that he could try; this finally made him feel more settled and calm. Why did it work? By giving the keys to Malcolm, I provided him with an activity that was closely related to his wish to go out, so he instantly felt that he was acknowledged. Moreover, he felt supported in trying to find a solution to get out of the respite cottage.
Always convey to the patient that he/she are needed and respected
The task of finding the right key, thus the solution to a problem that he experienced as being acute, made him feel needed and important. From then on, every single day after finishing his breakfast he spent most of the day standing by the door and trying the keys in. This made him feel busy and occupied. When mealtime came he would willingly settle at the dining table, and would smile when someone stopped by to say hello and have a few words with him.
Malcolm’s important ‘mission’ turned him into a rather sociable client who enjoyed to interact with others. At the end he became one of our regulars who enjoyed his stay at the cottage.
But there are no strict rules in dementia: each person with dementia is a case in itself
It was looking after another patient, called Christine that I learned the importance to be resilient and to use my creativity, common sense, and, as ever, patience while assisting people with dementia.
This was the moment when I first realised that there are no strict rules in dementia care since each person with dementia is a case in itself. The ability to adapt to each single situation is one of the golden rules to follow as the condition is completely unpredictable; the care-plan, based on functional assessment or the knowledge of personal history, is just a starting point to understand the client.
I’m bed-bound but I want to go swimming
When Christine came up with the obsessive idea of putting her swimsuit on in February I thought it was only a passing whim. However, she went on to explain to me that ‘the King of Zion was waiting for her at Felixstowe, in the sea, and she must put her swimsuit on and go to meet him at once’. Even though it was one of her unfortunate deliriums – caused by mixed dementia and advanced stage Parkinson’s disease – I knew that contradicting the patient head-on is never the answer.
Looking after her I learned that her hallucinations didn’t usually last long since her condition was kept in check by antipsychotic medication. However they occurred relatively often even though the type of vision, or obsessive idea, kept changing.
Carers must be responsive to their patients’ needs and find creative ways to accommodate them
Even though Christine responded well to every other aspect of her care, in this instance, the need to put her swimsuit on stubbornly stuck with her for a few days. So, as in Malcolm’s case, I acknowledged my client’s need even though they didn’t follow the logic of my own world. I got Christine’s swimsuit out from the other room and laid it on the bed next to her so that she could see and reach it whenever she wanted. As soon as it was within reach, she worried less about it and was able to focus on eating her lunch, getting dressed and washed, reading a book and so on.
I never questioned her need and fixed idea to have the swimsuit next to her. When her obsession with it was fading away, I removed it when she wasn’t looking. Christine never asked for her swimsuit again.
Caring for people with dementia is very fulfilling, if sometimes draining, and always very demanding. However, we must never forget that they’re people and as such are always worthy of respect, and we must use all the patience we can muster with them, much as we would if they were children even though they aren’t as small or endearing.
Lastly, we must try to understand their logic or lack of it, and not take it as an affront to our own logic if their requests or needs don’t make any sense to us; let us keep in mind that dementia is characterised by a degenerative impairment of the brain functions. In fact, whenever possible, it’s good to find creative ways to humour what we might perceive as their ‘whims’ which can be ways of expressing their fears and anxieties.
Agnes B. Juhasz is the author of The Dementia Whisperer: Scenes from the frontline of caring (published by Hammersmith Health Books on 15 November). She started her nursing career in Australia where she specialised in looking after dementia sufferers. Since 2010, she has settled in the UK where continues to be a full-time carer for people with dementia.