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.