* Hurrying and dementia don't go together well - aural and visual impairment may complicate things
When talking to a person living with dementia, it's a good idea to talk slowly and as clearly as possible. Depending on the progress of the disease, people may first of all have difficulty hearing what you say and may then take longer than you might expect to process what they have heard.
Similarly, every day tasks will often be carried out very, very slowly. It is very easy, to become impatient. And totally counter-productive.
As well as hearing problems, people living with dementia may also experience visual impairment and/or they may, like my wife, have their eyes closed a lot of the time. I often have to suggest that S opens her eyes when climbing the stairs or getting into a car, for example. It helps! As do the same little prompts each time.
* It's not inevitable that people living with dementia will end up in a care home but it's not always possible for them to be cared for at home
Carers often appear divided about this. Some are determined to see the role through to the end, others assume that there will come a point when they will not be able to cope.
In reality, while most people living with dementia end their days in a care home or in hospital, others do stay at home.
It is foolish for anyone to express certainty about their ability to cope right through to the end as no-one can predict how the condition will progress in any individual. Sometimes carers find their own health breaks down, perhaps as a direct result of the stress the role brings, and the decision is taken out of their hands.
* Most carers continue to care for a person even after they have moved to a care home
Many carers visit very regularly and try to make sure that everything possible is being done to make the person they care for contented.
Relatives often worry that the person living with dementia will forget who they are. This is not inevitable, and the more often you visit the less likely it is.
Showing posts with label memory loss. Show all posts
Showing posts with label memory loss. Show all posts
Tuesday, 20 May 2014
Monday, 19 May 2014
Dementia awareness (part 1)
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:
http://adventureswithdementia.blogspot.co.uk/2011/12/this-struck-such-chord-with-me.html
* 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.
* 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:
http://adventureswithdementia.blogspot.co.uk/2011/12/this-struck-such-chord-with-me.html
* 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.
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