Horses for courses

Those looking after a person living with dementia often discuss the best way of dealing with the situation where the person you are caring for believes something that is not true  -  believing that their partner is their parent, for example. 

I think that you have to play it by ear depending on your own circumstances. You will find some people for whom honesty will always be the best policy and others who will always go along with what the person they care for says, even adding details they have invented themselves to the person's 'story' . I tend to try not to go down the path of invention which, it seems, can easily get out of hand and even catch you out. Often a bit of distraction works and you don't even need to start spinning an appropriate story. But the ultimate test is what is most likely to make the person feel happy or, at least, untroubled.

Madness

I've read online about a disturbing way in which multiple drugs are sometimes prescribed for people living with dementia. This is how it goes, based on an actual example. The first drug is prescribed to deal with dementia symptoms. The person then becomes violent. A drug to reduce the violence is prescribed in addition. The person now starts having frightening hallucinations. A third drug is added, an anti-psychotic which causes the person to become zombie-like. Now, if the first drug has clearly not worked in the way it should have done - which is often the case - surely the obvious, sensible, logical thing to do is to stop it. Instead, the situation is complicated and compounded by the addition of another drug which also worsens the situation. And then another drug is added. Which worsens the situation further. I wonder what the record is for the number of drugs prescribed in this kind of sequence?

Herpes, Alzheimer's and schizophrenia - yes!

I was reading about schizophrenia, prompted by an article about a young girl diagnosed with it.  Her hallucinations were described and I couldn't help noticing similarities between her symptoms and S's.

Further searches appeared to suggest possible links with Alzheimer's and dementia more generally.  It's clear that in schizophrenia, whilst the psychotic symptoms predominate (they're actually referred to as positive symptoms), there are also less prominent symptoms of cognitive deficits which closely resemble those of dementia. 

These include the loss of concentration skills, memory, coordinated movement and dexterity.  And these are associated with the same kind of brain shrinkage, in the same regions of the brain, as is found in patients with dementia.

The next obvious step was to google herpes and schizophrenia.  By now, I wasn't surprised to get a large number of interesting results.

Cold sore virus and schizophrenia

You really should read the article  -  it's not too long  -  but this extract is so similar to statements I've read about herpes and dementia:

"We're finding that some portion of cognitive impairment usually blamed solely on the disease of schizophrenia might actually be a combination of schizophrenia and prior exposure to herpes simplex virus 1 infection, which reproduces in the brain," says study leader David J. Schretlen, Ph.D., an associate professor in the Department of Psychiatry at Johns Hopkins University School of Medicine.

The research, described in the May Schizophrenia Research, could lead to new ways to treat or prevent the cognitive impairment that typically accompanies this mental illness, including with antiviral drugs, the scientists say.

Citation: Disabled World News (2010-05-29) - Cold sore virus may contribute to cognitive and brain abnormalities in schizophrenia: http://www.disabled-world.com/health/dermatology/herpes/herpes-schizophrenia.php#ixzz2IVFFwy6X

I need to think about all this and to do some further searching.  But clearly HV1 is an even more ubiquitous and harmful virus than most people think.

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 friend....to 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.

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.

They should have seen her a few months ago

No doubt many people meeting/seeing S for the first time view her as someone with severe mental health problems. I've got used to our walking being constantly accompanied by her seemingly endless stream of conversation with her 'friends', much of it loud and agitated, but I can imagine that some of the people we pass find it unsettling. They would have found her behaviour even more disturbing a while ago.

On a bus, I'm even more 'on edge' about it. But it's encouraging that I can get her to reduce the volume when I feel it's getting anti-social. During the course of two bus journeys today, when she was talking  -  there were significant periods of silence  -  it was done so quietly that I doubt whether anyone noticed anything unusual. And this was without any intervention from me. So this is another thing that has improved.

Happily, it's not just me who sees improvements  -  I would start to doubt myself if it was. It's becoming very noticeable how everyone, including experienced professionals, who saw S back in the late autumn when she was going through the most difficult time, express surprise bordering on amazement when they see her now. People mention her calmness, her happiness, the fact that she looks so much healthier now that she regained some of the weight she lost and the fact that she clearly follows conversations much better, even though she often has difficulty making herself understood when she tries to participate.

Of course, everyone would like to know how this has been achieved. Join the club!

Naturally, I do have some ideas about this. I've mentioned some of them here. I'll try to pull all these ideas together in one post very soon.