I'm increasingly dubious about the 'Stages of Dementia'. The idea is that the condition can be broken down into stages. Typically each stage is allocated a list of symptoms. You check your cared for person's symptoms against a stage and then you know what stage they are at. Simples!
Except that when you speak to other carers or read what they have written you find that often people have a cluster of symptoms which might well include a few from each stage. If you raise this with a 'true believer' in the stages, they will tell you that you should only view the stages as a rough guide.
It's actually very, very rough. It seems to take no account of the fact that there are so many different kinds of dementia - possibly as many as there are people with dementia.
And I worry that if a carer is led to believe that the person cared for is in the 'late stages', they will treat them accordingly and this may become a self-fulfilling prophecy.
It's also interesting to me that there are a number of different versions of the stages floating about. And that they all seem to be based around odd numbers - 3 stages, 5 stages, 7 stages, never, you notice, around even numbers. It reminds me of the magical numbers of myths and fairy stories.
Thursday, 6 June 2013
Tuesday, 28 May 2013
Diagnosis and possible prevention
This recent article is interesting:
http://www.bbc.co.uk/news/health-22531066
http://www.bbc.co.uk/news/health-22531066
I have reservations about the current emphasis on the need for early diagnosis and I've discussed them before (type 'diagnosis' into the search box at the top left if you're interested).
Leaving these views to one side, it interests me that the article clearly suggests that diagnosis is a more complicated matter than we are sometimes led to believe:
'The National Clinical Director for Dementia in England, Prof Alistair Burns, says the MoCa test could be an important component in identifying risk of vascular dementia, but he says by itself it is just a "snapshot", and a lot of other factors should be brought to bear in arriving at a diagnosis.
"It's not just one thing. It's looking at the history of the person, it's looking at how they are doing in general, it's looking at the medical history, at brain scans, and that test of cognition, of executive function."
However he says the message about the possibility of prevention is important.'
The possibility of prevention is another interesting topic about which there are few clear-cut answers. Since vascular dementia was first identified it has been clear that lifestyles which minimise the risk of heart disease or stroke might help to prevent vascular dementia as well. But there are several different kinds of vascular dementia and many, many more kinds of dementia that don't seem to have any connection with the vascular system. It's important that people understand this.
Friday, 24 May 2013
Dementia Awareness Week
It's currently this week (ends tomorrow) in the UK.
Mumsnet invited me to do a special guest blog to mark the occasion. You can find it here:
Mumsnet guest blog
(The previous link was only good for a day. Apologies.)
Regular readers will see that I've covered several familiar points, but it nay be useful as a starting point for new readers.
Mumsnet invited me to do a special guest blog to mark the occasion. You can find it here:
Mumsnet guest blog
(The previous link was only good for a day. Apologies.)
Regular readers will see that I've covered several familiar points, but it nay be useful as a starting point for new readers.
Tuesday, 7 May 2013
Please consider signing this petition
I'm never sure myself whether it's really worth signing online petitions, and there are so many on this topic that they are probably in danger of competing and cancelling each other out. However.........
The demand is for free care for people who need it, for whatever reason. Obviously I'm coming at it from the point of view of someone who cares for a person with dementia but there are many other conditions and diseases that lead to people reaching a point where, if someone doesn't look after them, they will die.
Currently in the UK, you have to pay for this care, unless your income/savings are below a certain point. Care, provided either in a home or 'at home' is incredibly expensive and sometimes not of a very high standard. It is generally provided by private companies, though there are a few charities who also run homes. If you are below the income/savings threshold, the Local Authority usually pay a lower fee than the care hones charge 'self-funders'. Indeed there are grounds for believing that the companies subsidise the Local Authority places via the higher self-funding costs.
There are plans, currently due to come in during 2016, for a different system which might help to ensure that people don't necessarily lose all their savings and sometimes their home in care fees. It is a rather complex scheme!
The petition calls for everyone to be treated equally.
As always, the question is where the money will come from to meet this demand. We would all have different ideas about this, but I think most people know that the way wealth is currently distributed suggests that there are many better choices that could be made in terms of tax and spending.
If you want to read more about this particular petition, follow this link:
Care of the elderly without bias
The demand is for free care for people who need it, for whatever reason. Obviously I'm coming at it from the point of view of someone who cares for a person with dementia but there are many other conditions and diseases that lead to people reaching a point where, if someone doesn't look after them, they will die.
Currently in the UK, you have to pay for this care, unless your income/savings are below a certain point. Care, provided either in a home or 'at home' is incredibly expensive and sometimes not of a very high standard. It is generally provided by private companies, though there are a few charities who also run homes. If you are below the income/savings threshold, the Local Authority usually pay a lower fee than the care hones charge 'self-funders'. Indeed there are grounds for believing that the companies subsidise the Local Authority places via the higher self-funding costs.
There are plans, currently due to come in during 2016, for a different system which might help to ensure that people don't necessarily lose all their savings and sometimes their home in care fees. It is a rather complex scheme!
The petition calls for everyone to be treated equally.
As always, the question is where the money will come from to meet this demand. We would all have different ideas about this, but I think most people know that the way wealth is currently distributed suggests that there are many better choices that could be made in terms of tax and spending.
If you want to read more about this particular petition, follow this link:
Care of the elderly without bias
Friday, 12 April 2013
Thatcher's dementia
People who have a particular interest in dementia, e,g, carers, will have noticed how reticent the media have been in mentioning, never mind discussing, Margaret Thatcher's dementia. Indeed, the fact that she had dementia was only really confirmed publicly when her daughter Carol wrote about it in a memoir published in 2008.
Even those newspapers and broadcast media that have mentioned the word have generally failed to explain it to a public, many of whom are not particularly well-informed about it. Even those who have gone into a little detail have reported people's surprise that, even in the last months of her life, she was capable of lucid moments.
But this is not particularly uncommon, especially if people have vascular dementia which it would appear that Thatcher had: she had a series of mini-strokes which led to her withdrawing from public life. However, in amongst all the various facts, some of them extremely trivial, which the mainstream media have been so keen to throw us, you won't find many mentions or descriptions of vascular dementia.
One could just about understand a reluctance to publicise her condition whilst she was still alive. Unlike Terry Pratchett, who has seen it as a responsibility to 'spread the word', Thatcher and her supporters were generally silent about her condition. But once she had died, there would seem no reason not to discuss it.
What is really needed is a massive public campaign to explain dementia, and what it actually means, to the general public. Here was an excellent opportunity to inform: an opportunity spectacularly thrown away.
Even those newspapers and broadcast media that have mentioned the word have generally failed to explain it to a public, many of whom are not particularly well-informed about it. Even those who have gone into a little detail have reported people's surprise that, even in the last months of her life, she was capable of lucid moments.
But this is not particularly uncommon, especially if people have vascular dementia which it would appear that Thatcher had: she had a series of mini-strokes which led to her withdrawing from public life. However, in amongst all the various facts, some of them extremely trivial, which the mainstream media have been so keen to throw us, you won't find many mentions or descriptions of vascular dementia.
One could just about understand a reluctance to publicise her condition whilst she was still alive. Unlike Terry Pratchett, who has seen it as a responsibility to 'spread the word', Thatcher and her supporters were generally silent about her condition. But once she had died, there would seem no reason not to discuss it.
What is really needed is a massive public campaign to explain dementia, and what it actually means, to the general public. Here was an excellent opportunity to inform: an opportunity spectacularly thrown away.
Sunday, 7 April 2013
Generalisations about people with dementia
You find them all over the internet. Even when people pay lip service to the idea that 'everyone is different', they frequently state, suggest or imply that 'they' do this, can't do that, feel this, must be treated like this, cannot understand that....
The absurd thing is that those who make these statements will themselves often only have experience of two or three people with dementia. Either they are thoughtlessly extrapolating from this miniscule sample or, more likely, they're just repeating what they have read or been told by other equally misguided people.
I've mentioned before a couple of totally false assertions:
http://adventureswithdementia.blogspot.co.uk/2012/08/are-people-with-dementia-capable-of-new.html
http://adventureswithdementia.blogspot.co.uk/2012/05/if-i-hear-anyone-else-talking-about.html
Statements like this also ignore that the fact that people are often diagnosed at very different stages of whatever type of dementia they have (and some people claim that there are over 200). Many people in the early stages of the diseases will be able to do nearly all the things that people without dementia can do. Indeed, they may be able to do some of them better than most people without dementia. The writer Terry Pratchett is a well-known example. Several years after diagnosis, he is still writing books. Likewise, the singer Glen Campbell was able to produce a very polished album post-diagnosis.
For every celebrity, there will be thousands of other people who are still functioning 'normally' in some or many respects. People are still working, driving, and living independently.
I would advise people who want to try to understand the world of dementia to ignore any statement that lumps people together in the way that I've illustrated.
I'm not of course, denying that many people with dementia can have some things in common, just like people without dementia can. It's the absence of qualifiers - some, many, most - that gives the game away.
It's just sloppy thinking - on a par with talk of 'the poor' or 'the unemployed' - and often from people who should know better.
The absurd thing is that those who make these statements will themselves often only have experience of two or three people with dementia. Either they are thoughtlessly extrapolating from this miniscule sample or, more likely, they're just repeating what they have read or been told by other equally misguided people.
I've mentioned before a couple of totally false assertions:
http://adventureswithdementia.blogspot.co.uk/2012/08/are-people-with-dementia-capable-of-new.html
http://adventureswithdementia.blogspot.co.uk/2012/05/if-i-hear-anyone-else-talking-about.html
Statements like this also ignore that the fact that people are often diagnosed at very different stages of whatever type of dementia they have (and some people claim that there are over 200). Many people in the early stages of the diseases will be able to do nearly all the things that people without dementia can do. Indeed, they may be able to do some of them better than most people without dementia. The writer Terry Pratchett is a well-known example. Several years after diagnosis, he is still writing books. Likewise, the singer Glen Campbell was able to produce a very polished album post-diagnosis.
For every celebrity, there will be thousands of other people who are still functioning 'normally' in some or many respects. People are still working, driving, and living independently.
I would advise people who want to try to understand the world of dementia to ignore any statement that lumps people together in the way that I've illustrated.
I'm not of course, denying that many people with dementia can have some things in common, just like people without dementia can. It's the absence of qualifiers - some, many, most - that gives the game away.
It's just sloppy thinking - on a par with talk of 'the poor' or 'the unemployed' - and often from people who should know better.
Friday, 29 March 2013
What people with dementia really want
People with dementia and their family carers say (National Dementia Declaration) that they want to see the following outcomes in their lives:
I have personal choice and control or influence over decisions about me
I know that services are designed around me and my needs
I have support that helps me live my life
I have the knowledge and know-how to get what I need
I live in an enabling and supportive environment where I feel valued and understood
I have a sense of belonging and of being a valued part of family, community and civic life
I know there is research going on which delivers a better life for me now and hope for the future.
If you really accept this, then much of what passes as advice to people who care for people with dementia is seen to be deeply flawed.
I have personal choice and control or influence over decisions about me
I know that services are designed around me and my needs
I have support that helps me live my life
I have the knowledge and know-how to get what I need
I live in an enabling and supportive environment where I feel valued and understood
I have a sense of belonging and of being a valued part of family, community and civic life
I know there is research going on which delivers a better life for me now and hope for the future.
If you really accept this, then much of what passes as advice to people who care for people with dementia is seen to be deeply flawed.
Sunday, 17 March 2013
Is this inevitable?
On an online forum, someone who, along with other family members, is looking after Mum who has dementia, is asking whether it is inevitable that she will cease to recognise them at some stage.
My thoughts are that almost nothing is inevitable, except death - and the person we are caring for might die today, as might we.
I've always been a bit anxious so if I allow myself I can think of any number of horrific scenarios. You don't even need to imagne them these days, you can if you wish read blow-by-blow accounts of carers' experiences in real time.
What we have to try and do is, as people keep repeating, to live in the moment, like so many of the people we're caring for do.
I actually find the thought that everyone is different and everything is unpredictable a consolation. How would anyone cope if all people with dementia followed exactly the same path, on the same sort of timetable, via a series of known and minutely documented horrors towards their extinction?
And, by the way, it certainly isn't inevitable that Mum will fail to recognise her family.
My thoughts are that almost nothing is inevitable, except death - and the person we are caring for might die today, as might we.
I've always been a bit anxious so if I allow myself I can think of any number of horrific scenarios. You don't even need to imagne them these days, you can if you wish read blow-by-blow accounts of carers' experiences in real time.
What we have to try and do is, as people keep repeating, to live in the moment, like so many of the people we're caring for do.
I actually find the thought that everyone is different and everything is unpredictable a consolation. How would anyone cope if all people with dementia followed exactly the same path, on the same sort of timetable, via a series of known and minutely documented horrors towards their extinction?
And, by the way, it certainly isn't inevitable that Mum will fail to recognise her family.
Thursday, 7 March 2013
Cameron: 'It's a disease!'
An extract from yesterday's Hansard:
Tracey Crouch (Chatham and Aylesford) (Con):
Figures published yesterday show that over the past 20 years there has been a 137% increase in the number of deaths linked to Alzheimer’s disease. Does the Prime Minister agree that if we are to stop that awful condition from afflicting more people in the future, we must invest much more in preventing it and on research in particular? Will he outline to the House what the Government are doing to help support those with dementia and those who care for them?
The Prime Minister:
My hon. Friend raises a point of concern to everyone in this House and everyone in this country, because no one knows when a relative could be afflicted by the condition. Her point is absolutely right: this is a disease and we should be thinking about it as a disease, as we do when we try to crack cancer, or heart disease, or strokes. That is why the Government are increasing the amount of money going into medical research so that we can try to prevent dementia in more cases. But there are many other things we need to do to improve the care in care homes and in hospitals and to ensure that we have more dementia-friendly communities so that we all learn how to deal with people who have dementia and how to help them lead lives that are as productive as possible.
This is very interesting. First, Cameron is stating publicly that 'it' is a disease and comparing it with cancer heart disease and stroke. Millions agree (the clue is in the name: Altzeimer's Disease). But it isn't treated like these other diseases either in the way that people with the disease are cared for (their treatment is not 'free at the point of use') or in terms of the amount spent on research (the modest increase in no way reflects the scale or impact of the disease).
It will be fascinating to see whether he stands by this statement, actions speaking louder than words.
I'm inclined to think that it's just the usual PR. As a politician he makes a fine PR man.
But at least now these words are on record and there's something to try and hold him, and others, to.
Tracey Crouch (Chatham and Aylesford) (Con):
Figures published yesterday show that over the past 20 years there has been a 137% increase in the number of deaths linked to Alzheimer’s disease. Does the Prime Minister agree that if we are to stop that awful condition from afflicting more people in the future, we must invest much more in preventing it and on research in particular? Will he outline to the House what the Government are doing to help support those with dementia and those who care for them?
The Prime Minister:
My hon. Friend raises a point of concern to everyone in this House and everyone in this country, because no one knows when a relative could be afflicted by the condition. Her point is absolutely right: this is a disease and we should be thinking about it as a disease, as we do when we try to crack cancer, or heart disease, or strokes. That is why the Government are increasing the amount of money going into medical research so that we can try to prevent dementia in more cases. But there are many other things we need to do to improve the care in care homes and in hospitals and to ensure that we have more dementia-friendly communities so that we all learn how to deal with people who have dementia and how to help them lead lives that are as productive as possible.
This is very interesting. First, Cameron is stating publicly that 'it' is a disease and comparing it with cancer heart disease and stroke. Millions agree (the clue is in the name: Altzeimer's Disease). But it isn't treated like these other diseases either in the way that people with the disease are cared for (their treatment is not 'free at the point of use') or in terms of the amount spent on research (the modest increase in no way reflects the scale or impact of the disease).
It will be fascinating to see whether he stands by this statement, actions speaking louder than words.
I'm inclined to think that it's just the usual PR. As a politician he makes a fine PR man.
But at least now these words are on record and there's something to try and hold him, and others, to.
Thursday, 28 February 2013
Looks like a great resource for HSV1 and Alzheimer's
I recently came across this:
http://www.alzforum.org/res/for/journal/detail.asp?liveID=188
It interests me greatly and not just because there is a lot of detail (I've barely scratched the surface) about the link between herpes simplex and Alzheimer's (a link that was first looked at in the 1970's). I'm also intrigued that what is clearly a reputable Alzheimer's Research site is taking the growing body of research in this area seriously.
I simply cannot understand why the comparable bodies in the UK are neglecting this research. I think it's scandalous.
http://www.alzforum.org/res/for/journal/detail.asp?liveID=188
It interests me greatly and not just because there is a lot of detail (I've barely scratched the surface) about the link between herpes simplex and Alzheimer's (a link that was first looked at in the 1970's). I'm also intrigued that what is clearly a reputable Alzheimer's Research site is taking the growing body of research in this area seriously.
I simply cannot understand why the comparable bodies in the UK are neglecting this research. I think it's scandalous.
Tuesday, 19 February 2013
Sonas - Irish word meaning well-being, joy and contentment
Also the name given to a sensory stimulation programme.
S was offered a place on a Sonas course. As the day of the week on which it takes place is one when we have the care worker visiting to sit with S for a few hours, I asked her if she would like to go with S. She readily agreed even though this meant adjusting her time of arrival.
I thought it would be interesting for S to go to an activity with someone else. The downside of this is that I don't have a clear idea of what goes on. However I offered to go and collect S at the end of the session as the care worker lives near the venue and could then go straight home.
The session was winding down when I arrived. I could see S was quite happy, as she mostly is these days. Two things slightly disturbed me however. All the other participants were clearly quite old. We are used to this, to an extent, as S is still relatively young at 63 and a large majority of people with dementia are a good deal older. But usually there's a handful of younger people at the activities we attend. I'm not sure whether this bothers S though the songs they were singing along to at the end were all old songs and I doubt whether she would have known more than one or two.
The other thing was that, from my brief sample of the session, the prevailing attitude towards the participants might have been a little patronising. I am now quite sensitive to this since I realised how easy it is to get into the habit of treating someone with dementia as a child:
This struck a chord
Neither of these reservations make me at all question the potential value of the approach which involves stimulating all the senses in a programmed way. The care worker said that S really enjoyed it though she did find some of the activities difficult (which she does at most of the sessions we attend). So I'm still hopeful that there will be benefits beyond the enjoyment (which is obviously good in itself).
I would be happy to hear from anyone with experience of Sonas.
S was offered a place on a Sonas course. As the day of the week on which it takes place is one when we have the care worker visiting to sit with S for a few hours, I asked her if she would like to go with S. She readily agreed even though this meant adjusting her time of arrival.
I thought it would be interesting for S to go to an activity with someone else. The downside of this is that I don't have a clear idea of what goes on. However I offered to go and collect S at the end of the session as the care worker lives near the venue and could then go straight home.
The session was winding down when I arrived. I could see S was quite happy, as she mostly is these days. Two things slightly disturbed me however. All the other participants were clearly quite old. We are used to this, to an extent, as S is still relatively young at 63 and a large majority of people with dementia are a good deal older. But usually there's a handful of younger people at the activities we attend. I'm not sure whether this bothers S though the songs they were singing along to at the end were all old songs and I doubt whether she would have known more than one or two.
The other thing was that, from my brief sample of the session, the prevailing attitude towards the participants might have been a little patronising. I am now quite sensitive to this since I realised how easy it is to get into the habit of treating someone with dementia as a child:
This struck a chord
Neither of these reservations make me at all question the potential value of the approach which involves stimulating all the senses in a programmed way. The care worker said that S really enjoyed it though she did find some of the activities difficult (which she does at most of the sessions we attend). So I'm still hopeful that there will be benefits beyond the enjoyment (which is obviously good in itself).
I would be happy to hear from anyone with experience of Sonas.
Thursday, 7 February 2013
This is what we have sunk to
I'm amazed that this story has not been given greater exposure:
No food, no water, no medication - left to die in her own home
What this appears to tell us that in the UK in 2012, it's more important to crack down on allegedly illegal immigrants than to keep an elderly woman, who is paying for her own 'care', alive. What she must have gone through doesn't bear thinking about.
I am aware from reading online forums that there are many elderly confused people (often actually suffering from dementia) in the same situation, totally dependent on carers and with minimal, if any. contact with family.
As a British politician once said: 'I warn you not to grow old.'
No food, no water, no medication - left to die in her own home
What this appears to tell us that in the UK in 2012, it's more important to crack down on allegedly illegal immigrants than to keep an elderly woman, who is paying for her own 'care', alive. What she must have gone through doesn't bear thinking about.
I am aware from reading online forums that there are many elderly confused people (often actually suffering from dementia) in the same situation, totally dependent on carers and with minimal, if any. contact with family.
As a British politician once said: 'I warn you not to grow old.'
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