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.

Empowerment - and disempowerment

One of the most frustrating things for someone with dementia must be the sense of losing control, of being unable to do things for yourself, of having to rely on other people for help with the most personal of tasks. Just the thought of being in this situation is pretty scary for most people who aren't in this situation.

Even if we weren't able to work this out for ourselves, people with dementia who are still able to do so tell us that this is the case. Much of the agitation and aggression commonly demonstrated by people with dementia who no longer have the language skills to explain their feelings probably arises from this frustration.

It might therefore appear strange that one common method of communicating with and dealing with people with dementia stresses the idea that they can feel secure in the knowledge that all their needs will be taken care of, that they no longer need to worry about doing anything for themselves. Is this what you wold want to hear in that situation?

To me, the approach appears deeply flawed. You're telling people who feel totally disempowered that they ought to enjoy that feeling. How frustrating is that!

More importantly, the best way of losing a skill is to stop trying to use it. If everything is going to be done for you, the few things that you can do for yourself will soon fall away. And your carers will have no idea of what you might be able to do with a little help and encouragement.

It's very easy for a carer to fall into this trap even if they don't accept the ideology. In many ways, life appears to go more smoothly if you do everything for the person with dementia because you can do almost anything more quickly and more efficiently.

But then you'll wake up one morning and realise that there's nothing they can do for themselves.

New readers start here

As the blog is nearly one year old, it occurs to me that as new readers come along, it could be helpful to point them towards some significant posts that chart the perhaps unusual developments in my wife's condition.

This is one of the earliest posts:

http://adventureswithdementia.blogspot.co.uk/2011/10/slipping-away-from-me.html

This was one of the lowest points, though looking back, my anger probably helped me through this period:

http://adventureswithdementia.blogspot.co.uk/2011/11/dreadful-negative-experience.html

This was another awful time:

http://adventureswithdementia.blogspot.co.uk/2011/12/today-is-special-day.html

In the New Year, things started to improve:

http://adventureswithdementia.blogspot.co.uk/2012/01/bit-calmer-some-things-happening-lot-of.html

This was an interim 'progress report':

http://adventureswithdementia.blogspot.co.uk/2012/02/progress-report.html

I'll leave it at that for now, but post further selections on the near future.

It is of course possible to read any or all past posts by clinking the links at the bottom and right of the page. 

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'.

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.

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.

Are people with dementia capable of new learning?

Yes!

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

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.

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'.

The nuns' study

One of the most intriguing pieces of research into Alzheimer's is the ongoing nun study. In 1986 Dr David Snowdon, an epidemiologist and professor in Neurology, embarked on a revolutionary scientific study involving 678 spirited Catholic nuns; the School Sisters of Notre Dame. An ongoing project, the Nun Study has come to represent some of the world's most significant research on ageing and Alzheimer's disease. The participants, ranging in age from 75 to 106, have allowed Dr. Snowdon access to their medical and personal records; and these bright, articulate and altruistic women have each further agreed to donate their brains to the study upon their deaths. 


This link explains some of the findings:
http://www.dementiacareaustralia.com/index.php?option=com_content&task=view&id=236&Itemid=81 

The most interesting finding, in my opinion, is that  'approximately one third of the sisters whose brains were found to be riddled with Alzheimer's plaques and tangles at autopsy had shown no symptoms and scored normal results in all mental and physical tests while alive! Though the opposite result was true in other cases; such contradictory results show that there is much more to Alzheimer's than neurological changes in the brain alone.'

In other words, there were nuns whose post mortems indicated that they had the classic plaques and tangles which are assumed to indicate Alzheimer's yet they had no symptoms. Likewise there were nuns who did have symptoms but in whom, post mortem, there was no sign of the plaques and tangles.

And yet, years later, you can still read over and over again, apparently authoritative descriptions of the disease which make no mention of these findings!

It's inexplicable.

More about HSV 1 and beta amyloid

This blog post is another clear explanation of the possible (likely?) link between the Herpes virus and many cases of Alzheimer's. It also clarifies the uncertainties about whether beta amyloid is a cause of, or a reaction to, the disease.

This struck such a chord with me

Extract from information on the excellent website of dementiacareaustralia :

Challenging the Child-Myth of Dementia

There is a strong myth that people with dementia become childlike and that they don't know what is best for them. Not only is this a myth, it is also an unnecessary stigma.

Though the behaviour of a person with dementia may resemble that of a child, the two are worlds apart. The social inhibitions, which normally regulate our responses, lift in a person with dementia so that they may share the same spontaneous joy and appreciation of a child. However, it is crucial that you continue to see the person with dementia as a whole person, one who has lived a long life, contributed to society and who carries a backpack filled with life-history, experience and wisdom.

If you fall into the trap of thinking of them as a child, it will affect the way you treat them, which in turn will affect the responses you get back. Thinking of the person with dementia as a child will ‘program' your whole approach. It is likely you will talk to the person the same way as you would talk to a child and they are likely then to become defensive and respond with anger.

I don't consciously believe the myth but you hear people who do all the time and it inevitably has some effect on you. This is why it's so important to try to see the whole person and to blame the condition rather than the person. I'm sure I do sometimes talk to S as I would to a child but her usual response - 'Yes dear, I'm a big girl now!' - quickly brings me to my senses. It's not a childish response at all, but an adult using a humorous if sarcastic remark to make her point.

It's easy for the professionals to make promises...

....but delivery is a different matter. Most of the support promised has failed to materialise - 'it's been referred but the woman who deals with it is away for twelve days now' - and there are clearly many people ahead of us in the queue for things like 'aids and adaptations'. Not a big problem in that particular case as I have organised vinyl floor covering in the bathroom and handrail on the side of the stairs that hasn't got one.

The only professional who has visited was a psychiatrist who saw S when she was in a really bad way and assumed that she was like this all the time. I'm finding that an awful lot of assumptions are being made. We mentioned to one senior nurse who visited that S was eating sweet stuff to be told that 'they' develop a sweet tooth. Well, some of 'them' may but S has always had one. I keep having to remind myself that the Prof always told me that I was the expert on caring for S which was/is comforting but I always feel that there must be some professional somewhere who is prepared to really look at the whole person and find ways to make a difference. I have been lucky enough to find such people on an internet forum and even at a distance they show more understanding than most of the professionals locally. And even the Prof, a leading expert, seemed unable to offer much positive advice when we last saw him.