I think I've posted about this before but as time goes by it annoys me more and more. I often browse the Alzheimer's Society Talking Points and there's plenty of useful advice there. However, I often come across posts that generalise about Alzheimer's patients and even anyone with any kind of dementia in the crudest and most extraordinarily misleading ways. I read one recently and it disturbed me that many people were commenting on it as if it were the holy grail. Of course, it contained useful advice but it wasn't just the fact that it was so patently of US origin that put me off!
One section started 'They are scared all the time'. Sorry, that's untrue. It may be true of some of 'them'.(Indeed it could well apply to some people who don't have dementia.) Some of 'them' may be scared some of the time just like almost all of the rest of us. Another example from the same piece: 'Memory loss progresses daily'. This is so patently false that I'm surprised it's allowed on an Alzheimer's Society site. You only have to read a few posts to realise that one of the things that puzzles and frustrates many carers is that it is often the case that the person they are looking after is different from one day to the next, sometimes from one minute to the next.
What is it with these people? One of the best pieces of advice I ever received was: 'When you've seen one person with dementia, you've seen one person with dementia.' Every carer is caring for a unique individual person. They probably know this person better than anyone else. It's always worthwhile listening to what other people have to say and, if it seems appropriate, taking it on board. But if you find them talking 'they' and 'them' you can be absolutely certain that they are not thinking straight and what they say needs to be considered very carefully.
'When you've seen one person with dementia, you've seen one person with dementia.'
ReplyDeleteabsolutely!
I think if more NHS staff learnt this mantra, it might go towards improving dementia care in hospitals.
Absolutely Helena.
Deleteso patently US origin: what does that mean? I read everything I can about dementia, alzheimers and caregiving no matter the country. My blog is followed by people in over 10 other countries. We are in this together no matter where the origin of the post is. Enough of the rant!!
ReplyDeleteMy Mom went through a fearful stage; again it disappeared once the meds disappeared. Maybe "them" are all on meds that bring on this reaction. I'm more and more against medicating. As soon as someone in the medical profession hear Mom has vascular dementia they ask if she's on arricept. Did you know apples give the same result without the side effects. No we tried it at diagnosis, and it was horrible and started all kinds of agitation. No more arricept.