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.

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'.

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).

One way in which people become institutionalised

Since we started attending events and sessions organised for people with dementia, we've got to know a fair few of the people that turn up regularly at the same places as us. One of them recently disappeared from view. It turned out that she had been living with the family of one of her children and has now, for reasons unknown, gone into a care home or possibly into sheltered accommodation.. Now this woman, and I've had the opportunity to observe her in various settings, does not come across as anything other than pretty old and a bit confused. She can hold perfectly sensible conversations and take part in all sorts of activities  -  singing, dancing, playing musical instruments, playing board games, etc.

I know there is an argument that it is best for people to move into care sooner rather than later as they are more likely to be able to adjust and be contented. But I can see no reason why it is necessary for them to immediately drop all their usual activities, and have no further contact with friends and acquaintances they may have known for years. I do know she still lives within easy reach of all the venues and I've even offered to give her a lift. But what surprises me is that the relatives don't seem to have considered what effect this sudden cessation of activities and friendships might have. We know the disease changes people, but why is it necessary to add in additional completely unnecessary changes?

If I hear anyone else talking about 'them' and how 'they' are .......

I think I've posted about this before but as time goes by it annoys me more and more. I often browse the Alzheimer's Society Talking Points and there's plenty of useful advice there. However, I often come across posts that generalise about Alzheimer's patients and even anyone with any kind of dementia in the crudest and most extraordinarily misleading ways. I read one recently and it disturbed me that many people were commenting on it as if it were the holy grail. Of course, it contained useful advice but it wasn't just the fact that it was so patently of US origin that put me off!


One section started 'They are scared all the time'. Sorry, that's untrue. It may be true of some of 'them'.(Indeed it could well apply to some people who don't have dementia.) Some of 'them' may be scared some of the time just like almost all of the rest of us. Another example from the same piece: 'Memory loss progresses daily'. This is so patently false that I'm surprised it's allowed on an Alzheimer's Society site. You only have to read a few posts to realise that one of the things that puzzles and frustrates many carers is that it is often the case that the person they are looking after is different from one day to the next, sometimes from one minute to the next.


What is it with these people? One of the best pieces of advice I ever received was: 'When you've seen one person with dementia, you've seen one person with dementia.' Every carer is caring for a unique individual person. They probably know this person better than anyone else. It's always worthwhile listening to what other people have to say and, if it seems appropriate, taking it on board. But if you find them talking 'they' and 'them' you can be absolutely certain that they are not thinking straight and what they say needs to be considered very carefully. 

It's not all about suffering..........and imaginary conversations needs to be properly investigated

The admiral nurse pointed this out to me and it fits in so well with the person-centred approach to dementia. She was responding to my saying that S's 'conversations' with the people she imagines are now quite often calm and cheerful. So why should we say she is 'suffering' from dementia? Of course when she is agitated and distressed this is upsetting for people who hear her, including me though you would think I'd be used to it by now  -  I regularly hear the word 'nothing' repeated over and over again in a devastated tone before we've even had breakfast  -  it's like being caught up the last act of King Lear. But even this, as the AN suggested, could just be a way of dealing with stress. It's certainly nice when it stops!

So if there were a way of stopping these conversations with medication  -  there isn't*  -  it wouldn't be the right thing to do. And I'll have to find another way of explaining S's condition when an explanation is necessary.

*One of the many things that amazes me about the primitive nature of the research into, and knowledge about, the condition is that very little attention seems to have been paid to trying to understand the 'meaning' of these conversations. It's usually noted, in passing, that auditory hallucinations in Alzheimer's and other dementias is rare  -  and that's it. Yet as I've explained before, they usually sound like 'real' conversations  -  even though nonsense words and phrases are thrown in seemingly at random  -  and can be linguistically quite complex. You would have thought that any researcher with an ounce of curiosity would want to find out more about them. I suspect, if questioned, the professionals would say that it was just the neurons, tangles, plaque etc. But they don't talk, it's a person talking, often about events and issues that they have clearly experienced during their life.

A person is more than their cognitive ability

It's obvious really, but this extract from a Gransnet Q & A with Professor Alistair Burns, the government's 'dementia tsar', explains with great force and clarity why a person-centred approach is vital when dealing with dementia  (and the same could probably be said of all mental health conditions).

A criticism of the focus on dementia is that it puts too much emphasis on what is lost (memory) and not enough on what endures.

This plays into ageism by creating the idea that life is a process of inevitable decline.

The obsession with cognitive ability - which is actually prevalent throughout life, from the classroom onwards - leads us to a very narrow view of human nature and how to age well.

Do you agree that stereotypes of dementia are creating the idea that cognitive ability inevitably falls away in middle age? And that this obsession makes it very difficult to respect the selfhood of older people?

How do we treat the disease while avoiding this negativity?

Dear bridgeofsighs,

You raise a very important point in terms of re-ordering the way in which we regard and treat people with dementia. While we do know that cognitive ability (predominantly memory) does decline with age, there is the assumption, which as you say is completely false, that dementia is part of normal ageing. This brings up the profound therapeutic nihilism to which you are referring and, as you say, can lead to a narrow view of human nature.

You raise the key point of selfhood of older people. In dementia we call that personhood and the preservation of personhood enshrined in person-centred care is a key aspect of improving the treatment of people with dementia.

In terms of your last question, about treating the disease while avoiding this negative view, our awareness campaigns - while directed at alerting people to the early signs and symptoms of dementia - will help in this regard. The honesty and openness of people like Sir Terry Pratchett in declaring his Alzheimer’s and how he is living well with dementia is also an important part of rebuffing this negativity.

Meeting an Admiral Nurse

Admiral Nurses are dedicated to helping dementia sufferers, and particularly their carers, in the same way that Macmillan nurses work with people who have cancer. I'd been promised, by our Care Co-ordinator (from the Young Onset Service) that I would be able to have regular meetings with an Admiral Nurse. I felt this could be a great help to me as they obviously have an enormous amount of knowledge and experience and are also trained counsellors. Incidentally, this is one advantage of living in a metropolitan area  -  whole swathes of the population do not have access to Admiral Nurses. Scandalously, there are (according to the dementia UK website) only eighty five Admiral Nurses nationwide and they tend to be concentrated in a few places. However, anyone reading this who thinks they would benefit from a conversation with an Admiral Nurse can try calling 0845 257 9406 or can email: emaildirect@dementiauk.org.

I found the meeting very helpful. Some weeks ago I was aware of being so stressed that I went to the GP about it. He referred me for counselling so I also, eventually, have that as an option. But I think the AN who is a good listener and does not claim to 'know it all', who avoids generalisations and who appears to know a lot about various projects and groups in the area which might be helpful to S is going to be a great asset to me, and therefore to S -  their philosophy is to work with the carer in order to help both the carer and the person being cared for.

After the disappointments of the Young Onset Service, this could be a real boost.

Patronising professionals

You could fill a blog with them.  The latest one to use this particularly annoying example was a psychiatrist.  'And what tablets is she taking?'  We've had it all before: 'Do the tablets suit her?', 'Is she happy with her tablets?', 'There aren't any tablets that can help that'.  It's particularly inappropriate in S's case as she has the greatest difficulty in swallowing even the smallest tablets and either has to have medication in liquid form or crushed up.  What's wrong with 'drugs' or 'medication'?  I'm sure that this springs from an assumption that people with dementia, old people generally, and 'the masses' have to be talked down to and can only be expected to understand the simplest vocabulary.  Do they use 'tablets' in discussion with fellow professionals?  Of course not.

Also, there's an assumption that someone in S's position must be on a whole range of tablets.  Happily, she is currently pretty stable and may almost have shaken off the worst effects of the last 'tablet' she was persuaded to take.  I quite like the look of surprise, even shock, when I tell them that she's not on any medication.

How can S still be helpful?

S's sense of herself - she still has one - includes, very firmly, a belief that she should be and is helpful to others. This is absolutely correct, she was a single mother from the time her kids were very young and a teacher whose roles were often specifically and always predominantly to do with caring for and helping those in difficulty of one sort or another. I believe she would like to still be doing this sort of thing and is frustrated that this is just one of the things that she can no longer do - or as she sees it - is not allowed to do. I have realised this from listening to numerous versions of a conversation where she is trying to sort out girls' problems (she finished her career, premturely, in a girls' school).

Her daughter and I have found that a sure way to get her co-operation, even when she's angry, is to ask her to help us.

I would love to find some other way(s) that she can be truly helpful and that we can keep praising her for. The cats we have acquired are one possibility. I agreed to the pressure from her daughters as I believe they could help to occupy and calm her but my line will be that by paying attention to them and stroking them she will be helping them - that will be her vital contribution to their care whilst I'll do the easy things like feeding them (though, of course I'll stroke them a bit too!).

If anyone else has any ideas - it's very hard - please let me know by commenting.

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.

My feeling about neurologists exactly. (My recent experience was not the only one.)

Before the advent of CAT Scans and MRI -- and often even with them -- a neurologist would perform a lengthy physical examination in order to tell what part of the nervous system was involved, 'localizing the lesion'. Of course, most conditions were -- and still are -- untreatable. A famous neurologist in the fifties once described his job as "Diagnose, adios."

Two neurologists are hot air ballooning when clouds come up and they realize they're lost. They go lower, and suddenly the clouds part and they see that they're passing over a field where a man is on a tractor.

One of the neurologists leans out and yells, "Hey! Where are we?"

The man on the tractor looks up and shouts back, "In a balloon!"

Then the clouds swallow them up again. The first neurologist smiles. "This has been a great day! We saw good scenery, we put back some brewskies, and now to make the day complete, the first guy we meet is a neurologist too."

"Wait a minute!" interjects his friend. "That looked like a farmer to me. What makes you say he's a neurologist?"

"Well, think about how he answered our question. He gave us precise localization and it didn't help a bit."

A dreadful negative experience

I've hardly had time to think this through properly but we had a truly awful experience at the Memory Clinic last week. We had a phone call asking if, because we had not yet had any contact from the community mental health team (still haven't), to whom S had been referred, we'd like to have an appointment with a neurologist (it had just become available). I did wonder how a neurologist could help at this stage but felt we couldn't pass up any possibility, so agreed.

We arrived fifteen minutes early and were finally called in an hour later. S did very well waiting, getting no more agitated than me! When we finally went in, I explained that the hour long wait was just what someone with S's condition didn't need. There was a cursory apology. Then he said that the 'full assessment' would take one hour (bear in mind that S has been continually assessed by the Prof and his team since 2000) and I wondered why we were there, whether there had been some mistake. We discussed whether we would leave. Then he said it might be completed in half an hour. I wish we'd left but we are so desperate for help that we decided to stay.

He then proceeded to speed read S's twelve year medical history in twelve minutes, nodding sagely from time to time, while we sat there like dummies. I've come across this before with medical people. Absolutely no preparation. That's appalling time management and an utterly disrespectful and insulting way to treat patients.

He then started the assessment, trying to talk to S. Not surprisingly she was in no fit state to answer his questions. He soon had to talk to me. I trotted out all the information he asked for and which we had told the Prof three or four weeks before. The significant difference was that whereas the Prof's approach is firmly person centred and he is as interested in what the patient can do as what they can't, the neurologist was very clearly working to a check list and looked as though he was gratified each time he was able to enter a black mark. So whereas the Prof was genuinely impressed that S was so interested in the US Open Tennis, not so long ago, that she was able to sit through and enjoy two matches which each lasted over three hours, the neurologist wanted to know if she would have been able to remember the results the next day. At one point he wanted to start testing S with the kind of questions that she has been trying to answer for twelve years. I told him that the clinic psychologist had realised that this was not helpful several years ago and he reluctantly desisted. He then produced a little book and showed S, who he already knows has some problems with vision, four poorly reproduced passport-sized B & W photos of a very young Tony Blair, Bill Clinton, Parkinson and someone else, can't remember. Did she recognise them? No. Did she not recognise this one - pointing to Blair. No. But what he didn't learn was that S often follows the TV news, and comments appropriately at times. I wouldn't mind betting that she would recognise Gordon Brown if he ever appeared now.

Anyway, I could see that he was working towards a diagnosis - that's how they see their job. So when he started to sum up, I asked him if anything he was going to say would offer us help in terms of treatment. The answer, of course, was no. Then he said that we deserved certainty, we should have a diagnosis - even though we hadn't asked for one - and that S has Alzheimer's. He said that people at the clinic had been beating about the bush (he didn't use that phrase but that was the gist) for too long, looking at all sorts of other possibilities (quite a sensible approach, I would have thought) and saying that S was atypical when she wasn't at all, it was just that the memory clinic staff did not see many young onset patients - if they had seen those that he has seen they would realise that S's symptoms were not atypical at all.

In case I haven't made this clear previously, we knew that S has some form of dementia, that it is progressive and that there is no treatment. The fact that some arrogant, patronising know-all has given it a name makes not one iota of difference.

All this raises a lot of issues which I will return to in future posts. Perhaps one of the most important is the fact that there is only one way in which Alzheimer's can be positively diagnosed and that is post mortem.

The difference between being seen by the Prof and this robot is that when you walk away from an appointment with the Prof you feel positive, even though there is rarely anything substantial to feel positive about. When we walked away this time, we felt totally negative about the experience. Essentially, the difference is about being treated as a whole person rather than a brain with a body attached to it.

If you've seen one person with dementia......

........you've seen one person with dementia. I read this somewhere and keep being reminded of it when hearing about other people who have the condition. I find it comforting somehow that there are so many differences, so many individual people. Yes, I know it always ends in the same way. But so, as we all know, does life itself.