As promised, here are some of the things about dementia which everyone who wants to be 'dementia aware' needs to bear in mind.
* Everybody who has dementia really is different from everyone else who has dementia.
Yes! Really. As more and more people are being given a diagnosis of 'mixed dementia' ('a little bit if this and some of that') and as more and more different types of dementia are being named it may be time to accept that there are as many kinds of dementia as there are people living with dementia.
As the wise saying has it: 'When you've seen one person with dementia, you've seen one person with dementia.'
* It's not just about memory
The public at large, and the media, appear to believe that dementia is all, or mostly, about losing your memory. It is, in part, but the difficulties involved in living with dementia go far beyond being unable to remember who the prime minister is, for example. You can live quite happily without being able to recall stuff like that. As Iris Murdoch is quoted as saying, in response to that question: 'I don't know. Does it matter?'
Of course, when someone loses the ability to write and, usually later, to read, you can call that 'forgetting' if you want to, but that doesn't do justice to the devastating loss of these abilities.
And when someone loses the ability to swallow and therefore dies, which is how most people with dementia die, to say that they have forgotten how to swallow is akin to saying that someone who dies from lung disease has forgotten how to breathe.
Worse still, for so many carers, are the personality changes which occur in most, though not all, people who have dementia. Sometimes, it is true, people change for the better, and a person who has been cantankerous all their life softens and may even become appreciative of the help they are being given. But more often, it seems, there is a change for the worse. People who have always been warm and gentle human beings can become verbally and physically aggressive towards those they previously loved and harangue or attack them night and day. Imagine that.
Even people who retain some of the qualities that made them so loveable tend to lose the ability to empathise so that when they are told bad news about someone who used to be close to them, they might make an appropriate verbal response but give no indication of being upset. I suppose they've 'forgotten how to feel'!
* A person with dementia is not a child
Though there are obvious similarities between the behaviour of someone with advanced dementia and the behaviour of an infant, it is very important to remember that the person living with dementia is not a child, but a person who has decades of experience and memories even though these may no longer be accessible in ways that we can recognise. This post contains a quote which explains why this is so important:
* The best way to relate to a person with dementia is to try to to relate to them as a person
Try talking to them. You may be able to have a perfectly normal conversation with them. They may take a long time to reply. They may not reply at all. You'll soon get some idea of what they are capable of. And, as you get to know them, they will probably still surprise you.