At a Dementia Forum earlier this week, someone said; “Until you change the way a person thinks, you won’t get a change in his/her behaviour.” Initially I thought it was quite profound, but upon reflection, I’m not sure it’s true, as I suspect the only person we can change is ourselves. Changing the way a person with dementia behaves or thinks, especially in the later stages of the disease will be entirely up to the way the carer behaves and speaks. It is not the words you say we will remember, but the way we feel when you say them. I’m pretty sure you can’t change anyone, and especially a PWD unless you change your own behaviour, thinking and the way you communicate with them.
The following image and words came from another bloggers site, but I forgot to note whose it was. Apologies to the blogger who brought it to my attention, and to the creator as I don’t even know who that was. However it is a very interesting write up about memory, resonating with me as ever since the diagnosis of dementia, I am almost always wrong, unless I have concrete proof I am right! I’ve gotten used to this, as also realise it is now often the case. And before I had dementia, I often had a dose of ‘having to be right’! We all know this is a serious pain in the neck if you have to put up with someone like that! It is so hard to change even ourselves, and one of my mantras has been “worry about the weeds in your own back garden, not someone else’s”. And a lot more acceptance and unconditional love, and less criticism of others and self.
I think a BIG problem with “change” for a person with dementia is that they have to REMEMBER that they want to change.
eg. I want to change the way I react to something, but at the time I never remember that I want to change my reaction until it’s too late . I’m one of the people that WANTS to change.
When I’ve had to change behaviour – like not eat certain foods – until I learnt it I had to put notes around until I learnt that I didn’t want to eat them.
I don’t have medium or advanced dementia either ….. which would make it near impossible as the disease progresses.
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Dementia itself highlights this aspect.
The sufferer of dementia is changed within, and that leads to behaviour change. The crux of the matter being that the change within for the sufferer is completely outside their control. The observer, however, doesn’t see the inner change, nor realise it isn’t something that the sufferer can ‘manage’, and hence, the lack of imagination as to the cause of the behaviour change!
So the observer is forced to change their reaction to the sufferer. The more compassionate, don’t see this change as something that needs to be forced, but others might!
We know that relationships are complex. That tiny, seemingly insignificant things seem huge, and lead to much larger reactions. Take two statements with the same objective – I would like you to do ABC versus You must do ABC they are trivial differences in sentance structure, but the reaction can be massive!
But the changes in behaviour, in the words used, etc, by sufferers can be much more significant. But they are not explicitly chosen! When does observer compassion become patronising?
Paul
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As always Paul, you offer more perspectives. Thank you. My only comment today, is I personally prefer not to be referred to as a ‘sufferer’ of dementia, but rather as Kate, a person diagnosed and living with the symptoms of dementia. How much I can or can’t control what ixs happening to me, and the changes to my behaviour are currently still ‘manageable’, and I am definitely NOT looking forward to the day that changes. Best, Kate
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I agree that change needs to come from within. Although sometimes a person needs to be confronted with an ‘inconvenient’ truth to re-evaluate their opinions and beliefs that are based on mistruths.
Sometimes this will require a re-creation of the person you have become, as these opinions and beliefs can have become fundamental to the person you are, which may not be the person you think you are or want to be.
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I know you have done this, and it was hard work and required a lot of bravery… well done. xxx
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