Who am I caring for?

Am I caring for a dementia sufferer?

Or am I caring for a woman who has:
daughters (and sons-in-law),
grandchildren,
a husband,
a father who's still alive,
a brother and sister-in-law,
stepsons (and step daughters-in-law),
many friends,
an interesting and varied career to look back on,
a deep love of music,
many wonderful, and some very sad, memories,
etc, etc, etc,
and who now has dementia?

There is a difference.

The myth of intelligence

It may not be immediately be obvious how this post is relevant to dementia, but bear with me.

I have always thought that our society is mistaken in being so in awe of 'intelligence'. This view has been strengthened by the current controversy over the GCSE 'moving the goalposts' fiasco. Regardless of the rights and wrongs of that issue, much of the discussion has accepted the need to have an exam at 16 which will sort sheep from goats and correctly identify the most 'intelligent' who will become the movers and shakers of our society. We're constantly told that universities and employers are interested in the 'best' (by which is meant 'most intelligent') students.

In fact the exams as currently formulated are largely memory tests, i.e. slightly more sophisticated than the memory tests given to people who might have Alzheimer's or some other kind of dementia. 'Who is the prime minister?' is a common question that's asked of 'dementia suspects'. I'm indebted to someone posting on an online forum for passing on novelist Iris Murdoch's answer (she had Alzheimer's): 'I don't know, but does it matter?'

The answers to so many exam questions are taken to be indicative of 'intelligence' in the same way that knowing who the prime minister is a potential 'get out of jail' card for the dementia suspect. This is, if I may say so, a bit mad. What does the ability to answer this kind of closed question really tell us about the person, other that that in these cases they remember or they forget? 'Does it matter?' is an appropriate response in all cases.

Not surprisingly, in the public consciousness intelligence and the memorising of facts are seen as synonmous. Thus contestants on 'Who wants to be a millionaire?' routinely describe the people they've chosen as friends in 'phone a friend' as 'very intelligent'. Now that almost every fact that you might wish to know is a few keyboard taps away, this confusion might eventually fall away. Then people can start finding out about, for instance, Gardner's 'multiple intelligences'. But I digress.

I think that one of the reasons why people with memory disorders/dementia are treated (and I realise that word has more than one meaning) so badly is that 'intelligence' is prized so very highly  -  this is the other side of the coin. No memory? So no intelligence, no brain, no humanity.

We come back again to personhood. And there is a link also to education and preparation for life. If I'm right, and there are things that are more important than 'intelligence'  -  the ability to consider the needs and views of others, the ability to form relationships, the ability to cope with disappointment and tragedy, the ability to understand other people, the ability to 'read' situations from non-verbal clues and many more  -  then these things should have at least as much of a look-in, as far as education is concerned, as 'intelligence'. Very difficult to include in league tables but in reality vital abilities for many employees.

It is so much easier to relate to people with dementia, to appreciate their personhood, if you can escape the myth of 'intelligence'.

Personhood

I've mentioned personhood previously, and this is one of the posts that I'd urge everyone to read:

http://adventureswithdementia.blogspot.co.uk/2012/04/person-is-more-than-their-cognitive.html

In 'I'm Still Here', (see previous post), John Zeisel poses a question that should really stop us in our tracks: 'Does a person have to speak intelligibly, to remember the names of recent prime ministers, or to be independent in caring for him or herself in order to be a person?'

There's only one answer to that.

But accepting the answer intellectually, as most people who aren't neurologists would, doesn't necessarily make it certain that you will always remember the answer and act accordingly. As I've indicated at various points in the blog, I read what some experts say about people with dementia and wonder if they spend much time reflecting on the nature of 'personhood'.

This may be the book I've been looking for

My son mentioned that this book  -  'I'm Still Here' by John Zeisel  -   had been recommended as an inspiring read at a course he attended  -  not a course about Alzheimer's. I read the reviews on Amazon and decided to buy it there and then. I've only read the first chapter so far but the whole book is about a very positive, person-centred approach to the business of caring for people with dementia. I'll try to reserve judgement until I've read the whole book, but so far I'm very impressed. It looks like the book that everyone should read.

Anyone with a Kindle can try a free sample (which will probably be the first chapter that I've read).

More good stuff

We bought a small motorhome in 2006 when I retired from full-time work. Since then we've used it extensively and travelled as far as Hungary and Italy. When S had her sudden decline in the autumn I thought we would never go away in the van again. 


Last week, with S's full agreement and approval, we went on a short motorhome trip to Snowdonia. S seemed to slip seamlessly into motorhome mode again and in fact the two nights were better than the last few times we used the van last year. We met up with family which helped but also spent several hours confined in the van by a series of showers. We successfully chilled out to our own music and the radio. When we got back home we both thought it had been a big success.


This week, we went to the dentist for check-ups which I thought would be very difficult. It wasn't at all. S got into the right position on the chair, opened her mouth wide enough for inspection and a scale and polish. The dentist is superb, which is a great help, but S was just amazing, actually much better than the last inspection over a year ago.


I keep reminding S how well these things went and she certainly understands that these are significant achievements, even though when we saw a speech and language specialist this week (more on this later) she was unable to say the names of her two daughters. 


As I suggested in the previous post, there's the person and then there's their cognitive abilities.