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.

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.

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

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.

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.