Thursday, 30 August 2012

More conversation

A couple of day ago, S announced, 'She's gone!'. I'm very familiar with this. Normally it's a good friend that's gone. S used to be inconsolable about this, insisting that the friend would not come back. It hasn't been such a problem recently, but I'm still alerted by the phrase as it has led to such agitation in the past.

However this time it went: 'She's gone! My Venice.....which is wonderful for her!' No upset, no agitation.

S loves Venice. Two years ago we went there together and we were near Venice this year though as it was in July and we knew it would be very hot and very crowded we gave it a miss.

This happens more often now. A conversation will start off sounding ominous and will develop in a way that suggests there will not be a happy ending. But then things turn around and end happily. The example here is the most concise version I've heard.

My favourite words of S's are probably: 'Exactly right!' and 'Brilliant!', both of which can conclude some saga of misunderstanding or hostility.

Saturday, 25 August 2012

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'.

Tuesday, 21 August 2012

S's conversations - an update

In a much earlier post, I mentioned the nature of S's 'conversations' with her 'friends'. There have been some changes since then.

Generally, though they are still pretty repetitive, they are not so constant and she spends longer just sitting quietly, paying some attention to whatever is on the radio or TV from time to time, apparently quite calm and happy. She does get agitated, but not nearly as often or as dramatically as she used to and often the agitation, usually accompanied by walking up and down, is a signal that she needs something, the loo or a drink, e.g.

The conversations usually seem to take place in a school setting (she was a teacher). Sometimes she is the teacher and at others one of the kids. There's an awful lot of apologising: 'Oh...I'm sorry!' though it's not always possible to tell whether it is S or the person she is talking to who is doing the apologising. 'Oh God!' is another very common exclamation though these days it doesn't sound nearly as serious as it used to.

A lot of it concerns making arrangements: 'Tomorrow. We can go for a walk or something.' Misunderstandings also figure largely: 'Oh I see...I'm sorry', 'No! I said....'.

Sometimes a perfectly formed statement jumps out: 'Yes, it is good, but it's not half as good as it could and should be.' Where did that come from? Did someone say it to her sometime? Did she say it to kids? (Doesn't sound like her from what I know of her approach.)

I still find it tedious at times. But things could be, and have been, so much worse.

Sunday, 19 August 2012

Unanswered questions

Browsing online forums, I've seen two interesting questions raised. Neither of them has been answered. In fact they've been more or less ignored.

The first questioner, whose parent has vascular dementia, asked about the possibility of rehabilitation. One can see where she is coming from. Vascular dementia is often described as a series of mini-strokes (though some of them are not so mini it seems). We frequently hear about stroke patients who appear to have lost many of their abilities but gradually regain them with intensive help. So why, apparently, is no attempt made to give similar help to vascular dementia patients following a mini-stroke. They are often described as typically 'plateauing' after each mini-stroke and this would seem to be the appropriate time to attempt to help them make good some of their deficits, at least partially.

If I'm right in believing that this is rarely, if ever, attempted is it because the assumption is that any ground regained will quickly be lost when the next downturn occurs? Is it down to lack of resources? It would be interesting to know.

Another person asked about the possibility of counselling to help people with dementia. To those with no experience of family members with dementia, this might seem a silly question. It's not, for at least two reasons. These days, some people are often diagnosed quite early  -  at a time when they are able to communicate pretty adequately and when they often have a fair degree of awareness of their condition. There are also people that one comes across who have the ability to communicate effectively even with people who are at an advanced stage and who could probably help them in a 'counselling' way.

Actually there do seem to be some pockets of good practice in this respect, but mention the idea to most professionals and it doesn't seem to get you anywhere.

It amazes me that, given conditions for which there is no cure, so little effort is being put into developing effective treatments, other than into drugs which help some people to some extent but also often have unpleasant side-effects.

Tuesday, 14 August 2012

S's sense of humour

S's sense of humour is very much intact. Sometimes I have no idea what she is laughing about  -  when I go to bed and she's engaged in conversations with her 'friends' which provoke regular gales of laughter, for example. (I don't mind this at all, in fact it's a very nice soundtrack to fall asleep to.)

But often she makes and enjoys jokes. Today, her care worker was taking her for a routine appointment at the GP surgery. She'd never been before so I started giving her directions for walking  - it's not far. She preferred to drive, so I gave her the slightly different driving directions. Three phone calls later (the last of them from a mile away from the destination) I realised that the surgery would have by then closed for its (very long) lunch hour so they should come home. When they were back they were both in very good humour. P, the care worker, told me that she had just said to S, 'Would you give me a job as a chauffeur?'. S had looked at her and said, 'Hardly!'.

She also said that S couldn't tell her how to find the surgery but knew they had gone wrong, which I thought was interesting.

S also enjoys comedy programmes on TV. We watched 'Would I lie to you?' last night and she was clearly following it all the way through and laughing her head off.

The important point for me is that people who ask her questions and get what appear to be nonsensical answers, would have no idea that she could do these things and probably wouldn't believe me if I told them.

Wednesday, 8 August 2012

Are people with dementia capable of new learning?


Despite the fact that it's often stated that they aren't, my own experience tells me different. During the course of S's illness she has had to adapt to all sorts of changes. Sometimes, this has proved more difficult than at other times, but new learning has certainly taken place. Several years ago, we bought a motorhome. We have travelled over 30000 miles in it and have recently returned from a trip to Italy. S has had to learn all kinds of things as a result from, as an example, how to get into it (you have to climb up, rather than lower yourself into your seat as you do with most cars) to how to get onto the bed  -  from one end rather than the side.

But forget about S. It had already occurred to me that when people go into care homes it takes them a while to 'settle in' but after a time they nearly always do. What is settling in but new learning  -  new people, new procedures, new routines, new furniture, new toilets etc, etc, etc?

I was therefore heartened to see that John Zeisel in his book 'I'm Still Here' makes exactly the same point. His example involves a resident who gets angry when someone sits in 'her chair'. Other residents know it is her chair and know what her response will be. They have learnt, just as she has, that it is her chair.

Of course, there will come a point when new learning may be hard to see or non existent.

But there is all the difference in the world between treating someone as incapable of learning anything new, and treating them as potentially open to learning from new experiences, like most other human beings.

I read on an online forum, 'as is well known, people with Alzheimer's are incapable of new learning'. Like many of these well known 'facts', this is actually another of the all too prevalent and damaging myths about the condition

Monday, 6 August 2012

Thought for today

Or any day:

We take note of all the details of a disease and yet make no account of the marvels of health.
                                                                                             Maria Montessori

Quoted by John Zeisel in 'I'm Still Here'

The more we discover about the workings of the human brain, the more miraculous it appears. Even a brain damaged by disease is capable of amazing things.

Saturday, 4 August 2012


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

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).