Maybe old people don't want to be treated differently

S's dementia is classed as 'young onset' (as opposed to the former 'early onset' which might suggest you'll get it, sooner or later)  -  she was only 50 when she first had memory problems. Now we are often told that she and all the others like her are at a disadvantage as such provision as there is for dementia sufferers is almost exclusively tailored to the needs of 'old people' (because the vast majority of dementia sufferers are over seventy) and people of S's age who still have some awareness will not be interested in the same kind of activities as 'old people'.  I think this is correct.

But recently I started to think that maybe old people don't want to be treated as old people.  I'm older than S and I've no idea when I might think of myself as an old person but I'm pretty sure it won't be any time soon.  Maybe a lot of people think like that.  We're back to the person-centred approach again  -  people just want to be treated as individuals.  They should be.

Today is a special day

Not only is it Christmas Eve but it's also our Wedding Anniversary. This was not at the forefront of my mind as I was helping S in the bathroom just after she woke up and she grabbed my arm and bit me. It was not a deep bite - as with her more common aggressive symptoms, she clearly has some kind of degree of control as at the moment she never really hurts either me or her daughters, and I'm sure she could if she really wanted to. Often the peaks of aggression are followed by a demonstration of her utter frustration at the situation, usually expressed in sobbing, shaking and little screams. Then she usually becomes calmer. It's as though she just has to get the aggression and frustration out of her system. At least I'll be more aware of the possibility of being bitten in the future.

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.

Trying to classify S's conversations

Following on from my previous post, I've tried to list all the different types of conversation:

1) With imagined people: You only hear her side of the conversation. Inbetween there is silence when she is 'listening' and then she will respond.The conversation will generally be lucid and coherent (in its own terms) with sometimes quite sophisticated vocabulary and syntax.

2) With imagined people: You hear both sides of the conversation. The conversation will generally be lucid and coherent (in its own terms) with sometimes quite sophisticated vocabulary and syntax.

3) With imagined people: You hear both sides of the conversation, though the other person's contribution often includes nonsense sounds or syllables, almost as if she can't be bothered to put too much effort in.

4) When following a conversation (with friends and family): she will contribute the odd word, phrase or occasionally sentence which is an entirely appropriate response.

5) When following a conversation (with friends and family): she will respond but what comes out is confused and seems to have little relationship to what is being discussed.

6) With me and her daughter, S will often have usually short but perfectly normal conversations. She rarely pauses to 'find' words and never uses the 'wrong word'.

7) Occasionally she will have longer conversations with me, again talking fairly 'normally'.

Most of the day now is spent on 1, 2, and 3 though obviously if friends and family are around a lot, there tends to be less of those conversations.

Something that calls out for research

Another puzzling thing, and one that you'd think might repay research, is the fact that when S is having her conversations with imagined people (we could call them hallucinations though I don't think she usually sees them) or just talking to herself her language is often lucid, coherent and complex. Yet when she is more 'herself' and trying to join in a conversation she often struggles to express herself and people listening usually struggle to make much sense of it.

Of course, some of it may be to do with familiarity and repetition - many of her conversations are constantly recycled - but new variations and new topics do come along and she is equally sure-footed with them. It may also be that in some way she feels more in control - she is after all she is making up both sides of the conversation. Another strange and interesting thing is that sometimes there's a silence whilst she's listening to the 'other person' but sometimes she does both sides of the conversation.

I'm wondering if it's ever occurred to people to study this strange phenomenon?

The drugs don't work

Well, not quite true but it does seem to be the case that the best known drugs used to treat dementia symptoms are pretty poor. People carry on prescribing them and consuming them because what else are they going to do?

These two examples are from the Alzheimer's Society website:

What are the benefits of cholinesterase inhibitors?

In clinical trials of all three cholinesterase inhibitors, people taking the medications performed better on memory and thinking tests than those taking a placebo, or inactive substance. The degree of benefit was small, however, and more than half of the recipients showed no improvement at all.

What are the benefits of memantine?

One clinical study showed that people taking memantine showed a small but statistically significant improvement in their mental function and ability to perform daily activities. But study participants with lowest cognitive functioning showed no improvement on either daily activities or overall function.

This kind of thing makes it all the more puzzling that there's a big campaign to encourage people to come forward and collect their diagnosis so that they can be 'helped' - presumably with these and equally pathetic drugs.

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.

Direct questions

One oft-repeated piece of advice about interacting with dementia patients is to avoid direct questions - easier said than done, I admit. But what do the professionals do when 'assessing' a person with dementia? Yep......question after question.

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.