Thursday, 23 October 2014

Paying GPs £55 for diagnosing dementia

Readers in other countries may not be aware of a news story that is currently causing some controversy in the UK,  There is a proposal that GPs should be paid £55 for every case of dementia they diagnose (as I understand it, the money would go to the practice rather than to the GP personally).

Amongst the points that have been raised:

* Why should anyone be paid more for simply doing their job which diagnosis is part of?

* In reality when GPs suspect that a patient may have dementia they will normally refer them to a memory clinic/service for tests and scans and, hopefully, a confident diagnosis.

* There is anecdotal evidence that some GPs fail to spot the signs of dementia, particularly in younger people and, certainly, it would be unwise assume that a GP can make an accurate diagnosis of the condition.  I've read of two cases recently where people have been wrongly diagnosed as having dementia.  In one case, a woman sold her house to pay for care and spent over a year in a care home before the error was discovered.

* A distinction needs to be made between a diagnosis of the condition we call dementia and a diagnosis of one or more of the diseases that cause the condition. If it's clear that the diagnosis of dementia is not always easy, diagnosis of the disease(s) can be very difficult. It is true to say that a definite diagnosis can only be made post mortem  -  if then.

* Is it wise to rush to diagnose people with a condition for which there is no cure and for which the only treatments are, for many people, inadequate or worse?
I've discussed this in earlier posts which you can find by using the search box (top left).

* Many people living with dementia, and their carers, feel that adequate support post-diagnosis should be the number one priority.  There's also a fear that a rapid increase in the number of diagnoses made will simply put more pressure on support services which are, in many cases, already falling apart or non-existent.


Thursday, 16 October 2014

Fast diagnosis - a bit of a reality check.

I've written before about various aspect of diagnosis (try search  -  left top corner  -  if you are interested).

This story is a little worrying:

http://www.express.co.uk/news/uk/522684/Pensioner-Sold-Home-Dementia-Care-Home-Misdiagnosed

The story is a useful reminder that the diagnosis of dementia, and more particularly the diagnosis of a specific disease, is not always as straightforward as the current demand for fast-track diagnosis would suggest. As the quoted dementia specialist says, it's a bit of a reality check.

Saturday, 4 October 2014

A study on the association between infectious burden and Alzheimer's disease.

The following link will take you to a summary of this study:

http://www.ncbi.nlm.nih.gov/pubmed/24910016

The conclusion of the study is that 'IB* consisting of CMV, HSV-1, B. burgdorferi, C. pneumoniae and H. pylori is associated with AD. This study supports the role of infection/inflammation in the etiopathogenesis of AD.'

*IB: 'Infectious Burden' (the burden of previous infections by the viruses and bacteria mentioned)

This particularly interests me because my wife's dementia followed a long period, maybe 15 years, when she more or less constantly suffered from debilitating infections (I know that she tested positive for, amongst many viruses, CMV and HIV-1 and B. burgdorferi  -  which she has never been tested for  -  causes Lyme Disease which may be relevant in S's case see this).  I suspect others will be interested for similar reasons. 

I've previously seen it suggested that repeated infections might lay the groundwork, so to speak, for Alzheimer's but, for us, this conclusion takes things to a new level and might put a number of jigsaw pieces together  -  for what that's worth at this stage.

Monday, 29 September 2014

HSV-1 and Alzheimer's disease: more than a hypothesis.

A recent article with this title (also discovered on Alzforum) is summarised here.

Revisiting the link between the Herpes Simplex virus (HSV-1) and Alzheimer's Disease

Regular readers will know that I am very interested in this link.  New readers can find several past posts about the link by putting HSV-1 or herpes into the search box (top left).

I get the weekly newsletter from the excellent Alzforum Network.  For some reason, I searched their database today and found that Professor Ruth Itzhaki, who has done so much to research and publicise the link has very recently published a paper which updates the information that I posted here.

A summary of the new paper can be found here.

There are also some other papers that look interesting.

I never claim to understand all these papers but I think it's still possible to get the gist of them. If you've not come across the discovery of this link you may well be surprised that it is not better known.


Sunday, 28 September 2014

Alzheimer's and Parkinson's - an update

The appointment was useful. I was impressed by the specialist. Prior to meeting us he did the usual speed-read of 'the notes' of course (just the notes since the diagnosis when my S was transferred to the care of the Adult Mental Health Team). He started by saying that the AMHT guy we see had noted that my wife has Lewy Bodies Disease (she hasn't - the diagnosis is Alzheimer's). When I queried this he said he thought it best to forget about labels - a man after my own heart.  (But I'll query this with the AMHT.)

He quickly identified that, as suspected, my wife has several Parkinsonism symptoms e.g. rigidity, 'cogwheel' unbending of arms. He thought on balance it was worth trying a very low dose (initially one 12.5/50mg tab a day) of Co-careldopa. I'd told him about my wife's extreme sensitivity towards many drugs. He said that because of the low dose and the short half-life of the drug (2-4 hours) any serious problem would be very unlikely but, obviously, we should stop taking it if there were any problems.

This dose may not produce any improvement but will show if the drug is tolerated and then the dose could be upped later. Someone once told me 'start low and start slow' is a good policy for most drugs you've not taken before.

So, I started today when nothing else is planned.  We have had a short walk so far, about 3/8ths mile.  It was about as good as it gets at the moment  -  we didn't have to stop at all. No adverse effects are apparent.

We will also get a visit from the 'falls team' who might be able to suggest some exercises that could help.


The specialist also mentioned that a Datscan (relatively new) could confirm whether S has some kind of Parkinsonian syndrome but agreed that this would be something of an ordeal for someone with S's problems and that as he could already see the problems she has we could just get on and try to treat them.

Thursday, 25 September 2014

Alzheimer's and Parkinson's

Throughout the 11 or 12 years it took to arrive at a diagnosis of my wife's condition, all sorts of possibilities were examined. Among the diseases mentioned were Lewy Bodies and Parkinson's although they, like all the others that had been mentioned, were finally ruled out and we were left with the diagnosis of last resort - Alzheimer's

The tilt which my wife sometimes has - it can be to the left, the right, backwards and sometimes all of these alternating every few days with 'normal' - was observed by the GP after a fall and he thought that this and some of her hand movements might indicate that she now also had Parkinson's or some Parkinson's-like symptoms (though he didn't exactly share this thought at the time). Anyway, we've ended up with an appointment tomorrow with a doctor who specialises in Parkinson's and apparently has a very good reputation.

The little ray of hope, I suppose, is that whereas the handful of dementia drugs are useless or worse for many people (including my wife) it seems that drugs used in the case of Parkinson's are capable of alleviating some of the physical symptoms quite significantly.

I will try and report any progress here as I'm pretty sure that this will be of interest to some readers.

Sunday, 7 September 2014

Two myths about dementia

Two ubiquitous myths about dementia are that, once diagnosed, you can't vote and you can't drive.

These Alzheimer's Society Factsheets explain:

http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1780

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=144

(These factsheets discuss the situation in the UK)


Tuesday, 19 August 2014

Mental or physical?

'If problems in living are due to some brain disorder, then this a physical illness, not a mental illness.'

This is a quote from a letter in today's 'Guardian'.  It's hard to disagree with.

Of course, there are some conditions where it's not clear whether there's a physical cause but most dementia has an obvious physical cause, indeed the discovery of physical signs on a brain scan are now often used to establish a diagnosis.  We know that some people with dementia object strongly to having to attend mental health clinics.  Of course, mental health should not be stigmatised but also people's deeply-held views  -  prejudices even  -  need to be acknowledged.

The statement above should give food for thought to those who unthinkingly categorise all dementia as mental illness.

Thursday, 14 August 2014

Herpes and AD - yet again

I've come across yet another article about the link between HSV1 (the 'cold sore virus) and Alzheimer's disease:

http://www.sciencedaily.com/releases/2011/04/110404122203.htm

It's more recent than some of the other research I've seen and posted about.  And the researchers seems pretty 'upfront' about the link.

For new readers, if you wish to see several past posts on this important topic, you can do so simply by putting the word 'herpes' into the search box (top left).

For the avoidance of doubt, nobody anywhere is suggesting that all Alzheimer's disease is caused by the herpes virus.

Saturday, 9 August 2014

Disturbing yet moving self-portraits

The linked article is pretty self-explanatory (pity about all the garbage on the page):

http://www.viralnova.com/alzheimersself-portraits/

It's interesting that he was able to paint such expressive self-portraits even when the dementia was quite advanced.


Monday, 4 August 2014

They should make trackers for people

This is what someone wrote on an online forum after discussing the problem of trying to keep track of someone living with dementia who is still mobile.

They do, of course.  Google it if you are interested.

I know that cold fear when you look around and the person you're caring for is no longer there.  Now that S is more settled and doesn't move as fast it is hardly a problem.  But I still have to pack supermarket stuff with one hand  -  the other is holding onto S!  And if I let go she will sometimes set off to who knows where.

Increasingly I answer yes to 'Would you like help with your packing?'.