Unpleasant for everyone

Dealing with dementia often throws up examples of things that are not difficult just for people with dementia but for most other people as well.

A good example is mammography.

I took my wife to her last screening. The claustrophobic cupboard in which you undressed was right next to the screening room. I could hear that they were having trouble getting my wife to leave her breast in the clamp - she naturally moved away as it started to hurt.

They brought her back to the cupboard and said that they had only been able to complete two of the four scans. They said that they only had four minutes for each patient (for four scans)! I was surprised how red her breasts were. I should say that, normally, even since the dementia, she is very stoical about medical procedures that cause 'discomfort' (otherwise known as pain).

She was referred elsewhere, to a clinic where they had a bit more time and were able to complete scans to their satisfaction.

You wouldn't need to have dementia to find this procedure unpleasant.

Leave aside the valid debate about whether, overall, mass screening saves lives or loses them, there must be a better way of doing this.

Alzheimer Research Forum

http://www.alzforum.org

Another heads up about this excellent, though very complex and technical, site.  Just scanning through the comments you can discover some interesting thoughts:

These are puzzling cases indeed. Do these patients have ALS or a different clinical presentation of SCA2? How should we classify such patients? Intermediate repeat expansions have been identified as a genetic risk factor for ALS, while true (longer) expansions are encountered in rare sporadic and familial ALS cases and probably should be considered as a rare true cause of ALS. Thus, disease presentations of SCA and ALS within the same family are possible. That tallies with the concept that ALS is a clinical syndrome with heterogeneous etiologies, rather than a distinct disease entity.

Another milestone for the blog

The number of page views during the life of the blog has just passed 20,000.  I know of course that blogs about cup cake recipes and fashion accessories for pets probably get more page views in a month, but I'm very grateful to all our readers across the world for taking the trouble to have a look at my musings.

Thanks also to those who have left comments and become members.

I always hope to start posting more regularly, but this is very dependent on circumstances.  In some ways, looking after S has become less demanding since I started the blog but there are still times when significant pieces in the support jigsaw that enables me to have some time to myself become less available, for unavoidable reasons.

As well as being featured on Mumsnet and Gransnet as a guest blog, AWD can also be found on loveallblogs and talk health.

Now this could be a bit of a breakthrough

The latest Alzheimer Research Newsletter:
http://www.alzforum.org/
contains a fascinating account of research which has found that some people who appear to have Alzheimer's symptoms do not have the biomarkers indicating the presence of amyloid deposits (plaques) which most people with these symptoms do have.

Regular readers of this blog will know that there seems to be a growing scepticism amongst researchers about the almost universally promoted view that the build up of these plaques in the brain constitutes 'the cause' of the disease.

There is also recently reported research which suggests that some of those with the symptoms but not the plaques tend to have a type of dementia that progresses significantly more slowly than the AD which people with symptoms and plaques have.

The question arises: do these groups of people even have the same disease?

As usual, the reports on this site are quite technical.  If anyone can explain these finding more clearly. they are more than welcome to comment.

I have posted prviously about the nuns study
http://adventureswithdementia.blogspot.co.uk/2012/10/possibly-most-exciting-research-into.html

The research discusssed above might begin to explain why some nuns whose brains post-mortem showed no sign of deposits had all the symptoms of AD.  I still await with interest any explanation as to why some nuns had significant deposits but were not, whilst alive, dementia sufferers.

Spread the awareness

The link below will explain how you can help your MP to become more dementia aware.  You can send a proforma letter (which you can edit/personalise if you wish) inviting your MP to a meeting at Westminster.  It will only take you a couple of minutes.
http://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=1747

Care workers on zero-hours contracts

It's interesting to learn from the current, and fully justified, campaign against the use of zero-hours contracts that thousands of care workers are on zero-hours contracts.

Could there, I wonder, possibly be any connection between this fact and the often-expressed view that the service provided by organisations that provide care for profit is not always acceptable?

(The many readers of this blog who aren't UK-based may not be aware of this controversy.   It is becoming clear that hundreds of thousands of people 'employed' in the UK, some of them by very well-known companies, are on 'zero-hours contracts'.  This means that they are not guaranteed any work and do not have the same employment rights as other workers.  Yet some of the companies actually forbid them to take any other employment while they are 'contracted'.)

Dementia rates in the UK falling????

I was on holiday when this story broke.  If you google it you'll find it's reported in several places.

I haven't seen any comments on it  -  very odd, as we have been bombarded for several years with the opposite message.

I'd be interested in any views. I notice that it seems to concern dementias in the elderly exclusively. Some people believe there has been a dramatic increase in the incidence of young onset dementias, though I have not seen firm evidence on this.

A truly horrifying death

In May, the story of the death of Gloria Foster, an elderly woman with advanced dementia who was left to die in her own home, shocked the nation.

After the initial expressions of shock and outrage, things went quiet.  The media moved on as usual.  Later, a police investigation found no evidence of any criminal neglect.  This caused a ripple of surprise, and then the story disappeared again.

Thankfully, one journalist, Amelia Gentleman of the Guardian, did not 'move on'.  Her investigation into how it is possible in twenty-first century Britain, for a woman to die at home, alone, without food, water or medication deserves to be widely read.

Every policy or plan to deal with the coming explosion in the number of frail, elderly people who will need to be looked after should be judged against this criterion: would it help to ensure that in future no-one else has to face the ordeal that Gloria did.

And, of course, somebody should be called to account.  Soon!

http://www.guardian.co.uk/society/2013/jun/29/when-elderly-care-goes-wrong

An astonishing fact

The Alzheimer's Society has called on George Osborne to use the Comprehensive Spending Review to fund greater access to care for tens of thousands of people with dementia.

This is long overdue.

But what struck me most was this astonishing fact:

'a quarter of people in hospital have dementia'

Is it any wonder that so many hospitals are struggling to cope, not only with the 25% of patients who have dementia but also with the rest?

The importance of expectations

I have come to believe that the expectations that carers (family or paid care workers) have of people with dementia could be very important.

Some approaches to the care and treatment of people with dementia emphasise the need to convince people with dementia that they do not need to concern themselves in any way with anything at all.  Carers are advised, for example, never ever to ask direct questions and never ever to contradict.

This advice is sometimes presented regardless of where the person is on their dementia journey.  They could be at a very early point, recently diagnosed and still working.  It doesn't seem to matter.

This is a key aspect of what is sometimes referred to as 'compassionate communication'.  It might better be called the 'Don't worry your pretty little head about a thing' approach.

But it could be that this advice is not always in the best interest of people with dementia, even those like S who can do very little for herself.  I have always asked her direct questions and continue to do so.  Sometimes the questions have to be repeated, but if she understands the question she is usually capable of answering rationally.  If I had stopped asking her questions when it was clear that she had dementia symptoms, would she have been able to respond to questions years later?  I would not have known, and neither would anyone else.  But I suspect that, as in so many other cases, it comes down to 'use it or lose it'. I am not making any criticism of any carer who has realised that the person they are caring for is no longer capable of responding to questions.  Of course, anyone would eventually stop asking questions in this situation.

People sometimes find that when the person they care for goes into a care home or, worse, into hospital, there is a dramatic decline in their state of mind and their awareness.  There could be any number of reasons for this but perhaps one reason might be the absence of expectations or, indeed, unrealistic expectations, on the part of the staff.  We might surmise that the latter case is rarer.

The behaviour of people who do not have dementia is greatly influenced by the expectations of other people.  I think there are good reasons for believing that that people with dementia share this characteristic, though clearly it will almost certainly diminish as the disease progresses.

The stages of dementia

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.

Diagnosis and possible prevention

This recent article is interesting:
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.