An article in yesterday's Guardian appears to confirm that the Government's new approach to the assessment of people with disabilities is to rig the system so that a pre-determined percentage of people applying for benefits will be refused any benefit.
The government have always denied that this is their policy but it seems that the secret filming of training given to assessors shows trainers warning trainees that they will need to fail a fixed percentage. As usual in these cases, Atos (the private firm responsible for these assessments) and the government deny that any such agreed percentage exists. In the light of the filming, this is an absurd response.
Read the full story here.
Interestingly the article concludes by noting that, on a separate but related issue, the high court has granted permission to two disabled people to bring a claim for judicial review against the work and pensions secretary to challenge the operation of the Work Capability Assessment, on the grounds that it potentially discriminates against claimants with mental health problems. There is great concern that the new system (like the current one) has not been designed to assess people with dementia, nor other people with mental health problems, so could well underestimate the problems such people face.
Saturday, 28 July 2012
Friday, 27 July 2012
No further comment required...
Please share this photo guys @heardinlondon @owenjones84 @josielong twitter.com/MissEllieMae/s…....but for those who haven't been watching the opening ceremony there was a segment celebrating the NHS and someone has understandably been inspired to tweet this pictorial comment.
— Ellie Mae O'Hagan (@MissEllieMae) July 27, 2012
Tuesday, 24 July 2012
One way in which people become institutionalised
Since we started attending events and sessions organised for people with dementia, we've got to know a fair few of the people that turn up regularly at the same places as us. One of them recently disappeared from view. It turned out that she had been living with the family of one of her children and has now, for reasons unknown, gone into a care home or possibly into sheltered accommodation.. Now this woman, and I've had the opportunity to observe her in various settings, does not come across as anything other than pretty old and a bit confused. She can hold perfectly sensible conversations and take part in all sorts of activities - singing, dancing, playing musical instruments, playing board games, etc.
I know there is an argument that it is best for people to move into care sooner rather than later as they are more likely to be able to adjust and be contented. But I can see no reason why it is necessary for them to immediately drop all their usual activities, and have no further contact with friends and acquaintances they may have known for years. I do know she still lives within easy reach of all the venues and I've even offered to give her a lift. But what surprises me is that the relatives don't seem to have considered what effect this sudden cessation of activities and friendships might have. We know the disease changes people, but why is it necessary to add in additional completely unnecessary changes?
I know there is an argument that it is best for people to move into care sooner rather than later as they are more likely to be able to adjust and be contented. But I can see no reason why it is necessary for them to immediately drop all their usual activities, and have no further contact with friends and acquaintances they may have known for years. I do know she still lives within easy reach of all the venues and I've even offered to give her a lift. But what surprises me is that the relatives don't seem to have considered what effect this sudden cessation of activities and friendships might have. We know the disease changes people, but why is it necessary to add in additional completely unnecessary changes?
Saturday, 21 July 2012
A landmark
Whilst I was away on holiday, this blog passed the 5000 page views mark. I'm pleased that so many people have found my efforts of interest, also that a fair proportion of readers have read multiple posts.
By far the most read posts are those on the possible relationship between dementia and the herpes virus. This could be because such a large proportion of the population carry the herpes virus and these people are concerned about a possible link. I think it's important to point out that there's no suggestion that being a carrier means that you will experience dementia at some point in your life. First, no-one has suggested that all dementia is linked to the virus and, secondly, it seems clear that other factors must also be involved in the case of carriers of the virus who do experience dementia.
If you want to read all that I've written about the herpes virus, the simplest way is to put the word 'herpes' into the search box at the top left of the blog main page and press return.
Incidentally, I'm using 'dementia' here rather than 'Alzheimer's' because I'm becoming increasingly suspicious of the whole business of diagnosing a disease that can only be confirmed post mortem. You have only to read people's experiences online to discover a common picture of shifting diagnoses and people allegedly having two or more different kinds of dementia. There can't be many other fields of medicine where there is so much confusion amongst the 'experts', who can't even decide whether the physical signs they see in brains are the causes of the disease or the body's attempt to fight it. It's incredibly frustrating.
By far the most read posts are those on the possible relationship between dementia and the herpes virus. This could be because such a large proportion of the population carry the herpes virus and these people are concerned about a possible link. I think it's important to point out that there's no suggestion that being a carrier means that you will experience dementia at some point in your life. First, no-one has suggested that all dementia is linked to the virus and, secondly, it seems clear that other factors must also be involved in the case of carriers of the virus who do experience dementia.
If you want to read all that I've written about the herpes virus, the simplest way is to put the word 'herpes' into the search box at the top left of the blog main page and press return.
Incidentally, I'm using 'dementia' here rather than 'Alzheimer's' because I'm becoming increasingly suspicious of the whole business of diagnosing a disease that can only be confirmed post mortem. You have only to read people's experiences online to discover a common picture of shifting diagnoses and people allegedly having two or more different kinds of dementia. There can't be many other fields of medicine where there is so much confusion amongst the 'experts', who can't even decide whether the physical signs they see in brains are the causes of the disease or the body's attempt to fight it. It's incredibly frustrating.
Friday, 20 July 2012
A very good holiday
Regular readers of this blog will have noticed that I haven't posted in quite a while. There's nothing sinister about this. In fact, we've been on holiday. To Italy. We drove in our modest motorhome, covering around 2500 miles. There was a time last autumn when I was pretty certain that we would never go away on holiday again.
So it's been an amazing and memorable experience. I was prompted to consider this particular adventure by an invitation from my brother and sister-in-law to help them celebrate a significant birthday by meeting up with them and friends and family for a few days at a villa in Italy. S has improved so much over the last few months that I became increasingly sure that we could make it. It's been hard work at times, but that's just how life is now, wherever we are. In some ways things are simpler and more straightforward when we're staying in the van. S has spent many months living in it in the years since we bought it and usually remembers everything she needs to about how it all works.
Having both decided that we wanted to go, the best plan seemed to be to make a real holiday of it, not just try to race there and back, so we've also spent some 'rest days' at nice places we've visited before like Lake Garda and Lake Como. We've had some very long days on the road, not by design but because we hit some awful traffic and got lost a couple of times. So we have been 6 or 7 hours 'on the road' some days. This hasn't troubled S at all.
I've got a lot of sorting out to do now, but in due course I'll return to this experience. If you've read about how S was when I started this blog, you'll probably be as amazed as me at what we've done. And I do mean we. At times on holiday, S was as contented as I've seen her in years. But, like me, she's also glad to be home.
Saturday, 23 June 2012
Tamoxifen again
I've blogged about the possible link between Tamoxifen and memory/dementia:
here and here.
This is a link to an interesting article on this topic:
http://www.sciencedirect.com/science/article/pii/S0091305701006566.
Another interesting article - see the abstract at the start:
http://www.faceblind.org/social_perception/papers/zbasseda/zbasseda-Tamoxifen.pdf
Perhaps most interestingly, Tamoxifen appears to be a drug that researchers turn to when they wish, for whatever reason, to impair the memory of mice: as this link shows - and it's an interesting article in its own right: 'After being given tamoxifen (perhaps best known as a breastcancer drug) for eight days, an otherwise normally developing mouse had more than 80 percent fewer new neural stem cells in its hippocampus (a structure in the brain's frontal region linked to short-term memory).' And whereabouts in the brain is Alzheimer's first detected? In the hippocampus, I believe.
here and here.
This is a link to an interesting article on this topic:
http://www.sciencedirect.com/science/article/pii/S0091305701006566.
Another interesting article - see the abstract at the start:
http://www.faceblind.org/social_perception/papers/zbasseda/zbasseda-Tamoxifen.pdf
Perhaps most interestingly, Tamoxifen appears to be a drug that researchers turn to when they wish, for whatever reason, to impair the memory of mice: as this link shows - and it's an interesting article in its own right: 'After being given tamoxifen (perhaps best known as a breastcancer drug) for eight days, an otherwise normally developing mouse had more than 80 percent fewer new neural stem cells in its hippocampus (a structure in the brain's frontal region linked to short-term memory).' And whereabouts in the brain is Alzheimer's first detected? In the hippocampus, I believe.
Monday, 18 June 2012
Beacons of hope
There will be people who come across this blog hoping to find some answers, and maybe some hope.
As anyone who cares for someone with dementia, or who has dementia will know, answers and hope are in short supply.
However, in my search, I have found some glimmers of hope - if not for S, then maybe for others who are just starting out on this journey. For new or irregular readers here are links to some stories and summaries which I have found interesting and, in some cases, inspiring.
Morris Friedell
Herpes more the research a possible herpes vaccine
(It's worth noting that 'the research' is the most viewed post in the whole blog.)
Steve and Mary Newport
Centenarians
The nuns' study
As anyone who cares for someone with dementia, or who has dementia will know, answers and hope are in short supply.
However, in my search, I have found some glimmers of hope - if not for S, then maybe for others who are just starting out on this journey. For new or irregular readers here are links to some stories and summaries which I have found interesting and, in some cases, inspiring.
Morris Friedell
Herpes more the research a possible herpes vaccine
(It's worth noting that 'the research' is the most viewed post in the whole blog.)
Steve and Mary Newport
Centenarians
The nuns' study
Friday, 8 June 2012
Life on hold
On online forums carers, and not just carers for people with dementia, complain about their life 'being on hold'. It's pretty obvious really - life is never on hold. The sun rises and sets, you get a day older, your life goes on. What people are really saying, I guess, is that they are unable to live the life they would wish because of the circumstances they find themselves in. But this is a feeling that many, many people have, not just carers. You could say that it's part of the human condition, one of the things that makes us human even - it's not a problem your cat has.
It's more understandable maybe in carers than in whinging teens or workaholic thirty somethings who, in all likelihood, still have much of their life ahead of them (though we mustn't forget that people of all ages can have caring thrust upon them).
There's no solution of course - you're bound to feel like this at times. But if you try to carry on finding life interesting, even the difficulties that you're facing and possible ways of lessening them, and to get satisfaction from something that in more normal circumstances might pass unnoticed, like seeing the person you are caring for laugh (if they can) or actually completing a task on your mental 'to do' list.
And then of course there's music, friends, family, reading, memories..........
And that life that you could have been leading might not have turned out too well anyway.
It's more understandable maybe in carers than in whinging teens or workaholic thirty somethings who, in all likelihood, still have much of their life ahead of them (though we mustn't forget that people of all ages can have caring thrust upon them).
There's no solution of course - you're bound to feel like this at times. But if you try to carry on finding life interesting, even the difficulties that you're facing and possible ways of lessening them, and to get satisfaction from something that in more normal circumstances might pass unnoticed, like seeing the person you are caring for laugh (if they can) or actually completing a task on your mental 'to do' list.
And then of course there's music, friends, family, reading, memories..........
And that life that you could have been leading might not have turned out too well anyway.
Saturday, 2 June 2012
Centenarians who avoid dementia
This is another example of research that, like the nuns study, suggests that some people avoid or delay the symptoms of dementia 'despite the substantial presence of neuropathological markers of Alzheimer's disease'. This dates from 2004.
One can only agree with the conclusion. I have not discovered yet whether anyone has followed this up or whether, like other promising lines of enquiry, it has been ignored.
Dementia-free centenarians.
Source
Geriatrics Section, Department of Medicine, Boston University School of Medicine and Boston Medical Center, Boston, MA 02118, USA. thperls@bu.edu
Abstract
BACKGROUND:
A small percentage of centenarians, about 15-25%, are functionally cognitively intact. Among those who are not cognitively intact at 100, approximately 90% delayed the onset of clinically evident impairment at least until the average age of 92 yr.
OBJECTIVE:
To review current and past findings related to the prevalence and incidence of dementia amongst the exceptionally long-lived.
METHODS:
Findings from the various centenarian studies, world-wide, are reviewed.
RESULTS:
Neuropsychological and neuropathological correlations thus far suggest that there are centenarians who demonstrate no evidence of neurodegenerative disease. There also appear to be centenarians who despite the substantial presence of neuropathological markers of Alzheimer's disease did not meet clinical criteria for having dementia, thus suggesting the existence of cognitive reserve. Epigenic studies suggest a significant familial component to these survival advantages.
CONCLUSION:
Centenarians are of scientific interest as a human model of relative resistance to dementia.
Monday, 28 May 2012
The nuns' study
One of the most intriguing pieces of research into Alzheimer's is the ongoing nun study. In 1986 Dr David Snowdon, an epidemiologist and professor in Neurology, embarked on a revolutionary scientific study involving 678 spirited Catholic nuns; the School Sisters of Notre Dame. An ongoing project, the Nun Study has come to represent some of the world's most significant research on ageing and Alzheimer's disease. The participants, ranging in age from 75 to 106, have allowed Dr. Snowdon access to their medical and personal records; and these bright, articulate and altruistic women have each further agreed to donate their brains to the study upon their deaths.
This link explains some of the findings:
http://www.dementiacareaustralia.com/index.php?option=com_content&task=view&id=236&Itemid=81
This link explains some of the findings:
http://www.dementiacareaustralia.com/index.php?option=com_content&task=view&id=236&Itemid=81
The most interesting finding, in my opinion, is that 'approximately one third of the sisters whose brains were found to be riddled with Alzheimer's plaques and tangles at autopsy had shown no symptoms and scored normal results in all mental and physical tests while alive! Though the opposite result was true in other cases; such contradictory results show that there is much more to Alzheimer's than neurological changes in the brain alone.'
In other words, there were nuns whose post mortems indicated that they had the classic plaques and tangles which are assumed to indicate Alzheimer's yet they had no symptoms. Likewise there were nuns who did have symptoms but in whom, post mortem, there was no sign of the plaques and tangles.
And yet, years later, you can still read over and over again, apparently authoritative descriptions of the disease which make no mention of these findings!
It's inexplicable.
Sunday, 20 May 2012
Accentuate the positives
On the journey from mild cognitive impairment and on through various stages of dementia, discussions with professionals, at which patients are very often present, tend to focus on deficits. I have been very aware of this recently after help from an occupational therapist whose aim was to see what S can still do and how her skills can be developed and extended. She concentrated on putting socks on and teeth-cleaning though some of her observations and advice could be generalised to other activities. This was helpful, not only because she was pleasantly surprised at S's ability to respond to requests despite the distraction of her auditory hallucinations, but because S was receiving encouragement and a positive response. It made me realise that we haven't met many professionals who have been as positive. It is more usual for them to ask questions which highlight deficits and then to suggest to carer and patient that this is only to be expected. There's an underlying fatalism that doesn't escape S's notice.
I have always believed that people, whatever their age and condition, respond to other people's expectations so I can understand why some people with dementia would rather not see 'doctors'.
The message I take from all this is that it does no harm, and may do a lot of good, to concentrate on what people with dementia can do rather than what they can't.
I have always believed that people, whatever their age and condition, respond to other people's expectations so I can understand why some people with dementia would rather not see 'doctors'.
The message I take from all this is that it does no harm, and may do a lot of good, to concentrate on what people with dementia can do rather than what they can't.
Thursday, 17 May 2012
Belts and braces
I am interested in some of the ideas discussed by Dr Mary Newport, and her website is worth a look for anyone interested in alleviating dementia symptoms. This link will take you to a document which itemises the improvements she has noted in her husband since she has been giving him coconut oil:
Click here to download the Word document (you'll open a box allowing you to save it wherever you want to.)
One could fairly say that Dr Newport majors in coconut oil.
The problem though is that, in addition to the coconut oil, she has been giving him any number of dietary additives/supplements as well as several conventional drugs. Among the drugs, she has been using Valaciclovir, which is a supercharged version of the anti-viral drug Aciclovir, which S has been taking during the time when she has made marked improvements. So Mary Newport also believes that the herpes virus might be a contributory factor.
With an approach that involves so many different belts and three kinds of braces it would seem quite impossible to separate out the factors(s) responsible for the improvements. One can easily understand the thinking - let's try anything that might help - but is it really necessary, or desirable to take them all at once?
Also, I can't find much about the kind of life Mary and Steve lead. This could also be relevant.
Click here to download the Word document (you'll open a box allowing you to save it wherever you want to.)
One could fairly say that Dr Newport majors in coconut oil.
The problem though is that, in addition to the coconut oil, she has been giving him any number of dietary additives/supplements as well as several conventional drugs. Among the drugs, she has been using Valaciclovir, which is a supercharged version of the anti-viral drug Aciclovir, which S has been taking during the time when she has made marked improvements. So Mary Newport also believes that the herpes virus might be a contributory factor.
With an approach that involves so many different belts and three kinds of braces it would seem quite impossible to separate out the factors(s) responsible for the improvements. One can easily understand the thinking - let's try anything that might help - but is it really necessary, or desirable to take them all at once?
Also, I can't find much about the kind of life Mary and Steve lead. This could also be relevant.
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