Understanding the Situation
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Understand their capabilities
Reducing capabilities
For physical deterioration due to old age we can see, and accept, that the person isn't able to walk as far or as fast, both by witnessing their exertions and by the imprinted knowledge that such things are a feature of old age. Maybe we can relate to how we ourselves feel sometimes, when we're tired.
Unfortunately, for deterioration in mental capacity we don't generally have these same triggers to make us understand and accept the situation - we can't see their brain labouring away, society isn't very aware of the effects of dementia, and unless we've been exceptionally sleep-deprived for a long period we've never experienced anything at all like it ourselves. Add to that the desire for our loved ones not to be losing capabilities, and we're liable to imagine and work on the basis that they have greater capabilities than they do.
Realistic expectations
It's important to keep your expectations in line with your loved one's actual capabilities, not the greater capabilities you wish they still had. You'll need to revise your expectations as things change with time. Doing so will mean you're able to help them better, and you'll both be less frustrated.
We're not saying you shouldn't encourage your loved one to keep up their capabilities to the extent they can. For example, if you don't walk your muscles will weaken and soon you won't be able to walk or stand up from a chair, but equally their physical condition may deteriorate anyway and they may become unable to walk safely. Similarly, performing a routine task each day may help to keep how to do it in memory for longer, but it may still be lost eventually.
They're trying their best
Remember: if they're not doing something you'd like them to it's not that they're being awkward - it's because they can't do it, or simply can't understand what to do, or are misunderstanding the situation and think it would be foolish to do it.
It's also worth noting that one day can go very differently from the next - it sometimes seems that a very bad day can can be followed by a very good one.
We have more about the physical effects and progression of dementia in our section about dementia.
Remaining capabilities
On the bright side, remember that people with dementia still have a great capacity for love and for enjoyment at all stages of the disease, so make the most of that.
Also, don't assume that loss of one capability means a loss of others. We give a couple of examples below.
Loss of speech doesn't mean loss of listening
If as dementia progresses someone can't speak, that doesn't necessarily mean they can't listen and understand still. Different parts of the brain are involved and so the two capabilities don't go together as you might assume. So do make use of capabilities they still have, and don't forget that what you say in front of them, and how you say it, is important.
Don't discount everything they tell you
Don't discount everything someone with dementia says just because at first sight it seems unbelievable or jumbled - especially since there may be some important information but they're just struggling to make sense of it themselves or to express it well. If they tell you the visiting carer had a candle in their ear and it was glowing blue, then how else could they interpret a bluetooth earpiece when nothing like that existed in their heyday? Or, if you just assume the explanation for a pain must be something uncomfortable they've put in their pocket then you might miss something important.
Understand their behaviour
Someone with dementia may behave in what appears to be baffling ways. Their behaviour can be affected by very many things, some of which you may not currently be aware of (such as pain), and some of which mean they're responding to a very different situation from the one you see (as a result of misunderstanding what they see around them, or thinking they're still in a long gone situation such as needing to pick up young children from school). Considering the following may help explain their behaviour, and lead to ways of helping them.
Interpreting behaviour
We have a detailed section on all the sorts of factors that affect behaviour. Considering these may help identify an underlying problem that needs to be remedied, or otherwise to understand why the person is behaving that way and therefore how to respond in a way that will make things better for you both - see our section on interpreting behaviour.
We strongly recommend reviewing that section even when there don't seem to be any problems, particularly since prevention is better than cure.
Commonly occurring behaviour themes
See our section which aims to explain some of the commonly occurring behaviour themes.
Overview
If their behaviour is 'inconvenient' or 'upsetting' it's not because they're trying to be awkward, it's because they're expressing a need that isn't being met, and they're doing so in the only way they can find.
Don't forget they may be very disoriented in place and in time, and struggling with poor memory and with confusion to try to make sense of things and to cope. They may also have difficulty expressing things in the usual ways.
Dementia affects everyone differently, in terms of what concerns them, what they do and what they enjoy. Try to observe and interpret your loved one's pattern of behaviour, and tailor your approach accordingly. Things may change over time, so update your approach when necessary.
It's also important to note that they'll pick up on your emotions, and that these will affect their emotions too - as shown in the next subsection.
Emotional mirroring
How your loved one feels - happy, frustrated or anything else - will draw greatly on how you feel and exhibit those feelings in front of them. Emotions are contagious.
An illustration
Have you seen Chitty Chitty Bang Bang, where they arrive in the town square in some unknown foreign country and everyone stops and stares at them, and then hurries away? Imagine how unsettled that would make you feel.
Alternatively, if the locals smiled and ushered you to a cafe table and brought out nice food, that would feel comforting and reassuring instead. Even if you didn't know where you were and couldn't understand their language you'd be able to tell from their smiles, soft voices and manner that things were alright.
The persona to show them
Even in the later stages of dementia when someone can't understand words, they can still understand smiles, a hug, a kiss on the cheek, a hand being held, and the tone of a caring voice.
So when there are difficulties and you're feeling worried, upset, weary or frustrated, you have to try to show your care and a smile instead - it will make for a more successful day. That of course will make you feel better too - emotional mirroring works in the opposite direction as well. Try to say everything in soothing tones that give your loved one a 'hug'.
It takes effort and practice
Because emotional mirroring is hardwired into our brains too, it requires a conscious effort to break the cycle.
No-one's saying it's easy - we've evolved with tell-tales in our voice and body language to indicate to others when we're frustrated, as a prompt to them to modify what they're doing. However, that serves no useful purpose in these circumstances, where the other person will pick up that you're frustrated and be upset by that, but doesn't understand why you are and wouldn't be able to do anything else anyway.
So try to remember how much you do achieve for your loved one and that you're both doing your best, and keep the exasperation out of your voice when you can't achieve all you want to. Remember the smiles they give you and the fun things you can still do together.