Another conversation oddity

I've mentioned before that S's 'conversations' with imaginary 'friends' often make some kind of sense though they also contain a high proportion of nonsense words.

Then, every so often, from a stream of nonsense or half-sense pops a fluent and pretty complex sentence:

'Sorry love, it's not your fault but I would have liked to have done it.' (NB the use of the conditional perfect and present perfect tenses  -  I think!)

Extraordinary in its way.  And this kind of thing is not uncommon.

Going home

When my wife was at the lowest point in her decline last autumn, a professional arrived just at the point when she had fallen down and was either refusing or unable to get up.  She kept saying: 'I want to go home.'  'I assume this is where she lives?', he asked.  When I confirmed that it was, he nodded sagely.  I have since learned that this is a common feature in the progression of the disease.

People ask why.  Some conclude that, as so often in the case of older people with the disease (and as often in the case of older people generally) the person is harking back to their early years, safe and secure at home.  They may be.  But to me, it seems more general than that.

Everybody seems to have some concept of 'home' that may have similarities to the home they first knew but may not.  Even people who have had awful early experiences usually pick up the idea of what home is supposed to be.  We all talk of feeling 'at home' in comfortable places and a host will say 'make yourself at home'.  And we have sayings like: 'Home if where the heart is.'

It seems quite understandable to me that when someone's world is falling apart, they would like to 'go home'.

The most important point to me is that I can't remember the last time S said this.  It must have been a long time ago.

New readers' catch-up 3

 As promised, here's a selection of more significant posts from earlier in the year:

How S has improved

Possible explanations for S's improvements

Beacons of hope

Not forgetting the first two catch-ups:

http://adventureswithdementia.blogspot.co.uk/2012/10/new-readers-start-here.html

http://adventureswithdementia.blogspot.co.uk/2012/10/new-readers-catch-up-2.html

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

The 'cause' of Alzheimer's is questioned again

I've lost count of the number of times I've read apparently authoritative statements asserting that Alzheimer's disease is caused by the accumulation of amyloid plaques.  This has sometimes been questioned by those who feel that 'tangles' of stuff called 'tau' are a more important cause.  It has also been suggested that the plaques may be the body's attempt to fight the disease.

I've just come across some research that further undermines the conventional view.  Here's the abstract (summary):

According to the “amyloid hypothesis of Alzheimer’s disease,” β-amyloid is the primary driving force in Alzheimer’s disease pathogenesis. Despite the development of many transgenic mouse lines developing abundant β-amyloid-containing plaques in the brain, the actual link between amyloid plaques and neuron loss has not been clearly established, as reports on neuron loss in these models have remained controversial. We investigated transgenic mice expressing human mutant amyloid precursor protein APP751 (KM670/671NL and V717I) and human mutant presenilin-1 (PS-1 M146L). Stereologic and image analyses: revealed substantial age-related neuron loss in the hippocampal pyramidal cell layer of APP/PS-1 double-transgenic mice. The loss of neurons was observed at sites of Aβ aggregation and surrounding astrocytes but, most importantly, was also clearly observed in areas of the parenchyma distant from plaques. These findings point to the potential involvement of more than one mechanism in hippocampal neuron loss in this APP/PS-1 double-transgenic mouse model of Alzheimer’s disease.
(Hippocampal Neuron Loss Exceeds Amyloid Plaque Load in a Transgenic Mouse Model of Alzheimer’s Disease  -  The American Journal of Pathology)

Interestingly this dates from 2004 so perhaps others have pursued it further.  If not, one wonders why not.

Treasuring what you've still got

Someone was worrying online about her mother who wrote down the names of people in their family and her relationship to them.

I can understand the upset when the list was first discovered, but the positive way to view it is that it's good that she can still read and write and, even better, can reason that if she writes the names down this might help her to remember them.

Personally, I don't worry too much about names. My wife knows who I am (and will probably at some stage not know). She doesn't use my name. So what? She knows who the important people in her life are when she meets them and when I talk about them. These are the things that matter. 

She's not been able to write for a long time. I tried to help her retain the skills involved for as long as possible but it got too frustrating for both of us. I'm almost certain she can't read. At all. But I don't know for sure because when I understood how awful it was for her to be 'tested' (by anybody) I stopped testing her and asking her test-like questions.

One's expectations change. But the important thing is to try and make the most of what you've got - today. You might not have it tomorrow.

The best way to look at it is not 'What have we lost?' but 'What have we still got?'

Rashes and viruses

My wife's dementia was preceded by many years of ill-health involving viral infections. These often produced ME-like symptoms that were a problem for months at a time. I've discussed these before:

http://adventureswithdementia.blogspot.co.uk/search?q=viruses

It's always seemed to me possible, if not likely, that these infections have had something to do with the development of the dementia.

For as long as I've known her she has 'broken out' in rashes very frequently, usually when she is ill. They are the kind of rashes, mostly on her back or chest, that often come as quickly as they go.

I've mentioned previously that since she has had the dementia, the viral illnesses have disappeared (though until she started taking Acyclovir, an anti-viral medication, she was having regular herpes outbreaks). But the rashes I'm talking about have continued and often coincide with periods when her dementia symptoms worsen.

I'm going to try and discover whether other people with dementia have similar rashes. I'd be interested to hear whether anyone else with dementia has experienced similar rashes.

Fast-track diagnosis

There's currently a considerable amount of hype about a new state-of-the-art fast-track system for diagnosing dementia (which will of course make some entrepreneurs very rich).  We're told it is very important for people to have an early diagnosis.

I'd like to state an alternative view that I have mentioned before.

1) Even with the most sophisticated scans, it is still true that Dementias can only be properly diagnosed post mortem.

2) The fact above may not even be a fact. Read about the nun study:

http://promega.wordpress.com/2009/05...the-nun-study/

My wife was only 'diagnosed' after being investigated by a leading memory clinic for twelve years. Throughout that time she had increasing difficulties. But she also had access, at different points, to two of the much-vaunted small handful of drugs which people awaiting diagnosis and their families understandably have such high hopes for. They didn't help and had unpleasant side-effects.

During those twelve years we got married, our children got married, my wife had her first grandchild, we went on some wonderful holidays, we enjoyed our life together to the fullest extent possible.

If we had had a diagnosis earlier, how would it have helped?

Some people suggest that an early diagnosis would enable you to make the most of the time you have left. I disagree. We had all that precious extra time without an explicit death sentence hanging over us. Our Guru said: 'Live a good life'. That's all you can hope to do, with or without a diagnosis. But I reckon it's been a lot easier without.

And I'm not saying it's been easy!

Finally, because we had such a good 'pre-diagnosis' we've managed to carry on enjoying life when we can, after a fashion. As the early part of this blog details, my wife had a terrible period just after the diagnosis (there's a surprise!) but she has improved since then. (Steady now! People with dementia aren't supposed to improve. It's not allowed.)

Rebooting

I think it's quite well-known that people with dementia can be quite sensitive to transitions  -  for example, a visitor arriving or leaving.  So sometimes when the person's mood suddenly changes, for better or worse, you can look for any change that has recently taken place.

I've realised that this can be used to advantage.  S was particularly restless one night and I asked her if she needed the toilet.  She is, fortunately, prepared, almost always, to see if she needs the toilet.  On this occasion, it turned out that she didn't, but once she had settled back into bed her mood had changed and I was able to fall asleep to her usual happy 'conversations'.

It's as if a change is rebooting the brain.

When she is noticeably happy, I try to avoid much change so as to prolong that state.

Yet another thing that can cause a sudden decline

I've posted about this before. There are quite a few things that can bring on dementia or can produce a sudden decline in people who already have dementia:

http://adventureswithdementia.blogspot.co.uk/2012_09_01_archive.html

As I've said in this post, there are probably other things, and I've now come across carers who are reporting that the person they were caring for had low sodium levels and that when this problem was addressed there was a big improvement with regard to the dementia symptoms. They were surprised as, until blood tests pointed them in the right direction, they had no idea.

Possibly the most exciting research into dementia so far

It's not new. I've posted previously about the nuns' study:
http://adventureswithdementia.blogspot.co.uk/2012/05/nuns-study.html

I have found an article that explains, more clearly than ever, why this research should receive so much more attention:

Perhaps the single most important conclusion from the study is that Alzheimer disease is not straight forward. In several cases, pathology studies of brain tissue from the deceased nuns did not correlate with their performance on cognitive function tests. Sometimes the pathologist would score a brain as having signs of extremely advanced AD, only to learn later that the nun herself scored extremely well on all cognitive tests. Other times a brain would show only slight damage associated with AD, and the nun was characterized as exhibiting the signs of advanced cognitive decline and dementia.

I often wonder whether there is anything new from this study. Apparently the original researcher has retired but the University of Minnesota is hoping to continue the work:

Additionally, the University of Minnesota has announced that it will begin a second study, with a new group of volunteer nuns, to delve further into the mysteries of Alzheimer disease: Why do some people develop symptoms and not others? Why do some people with advanced brain damage: plaques, tangles and tissue loss, not show any symptoms, while others with minimal brain damage show symptoms of advanced AD?

How odd that these questions are so rarely referred to in discussions of the disease!

Here's a link to the article:
http://promega.wordpress.com/2009/05/04/alzheimer-disease-and-the-nun-study/

Sweet Tooth

I was telling a professional, when my wife was not eating much, that she tended to prefer sweet things. 'Ah yes, they develop a sweet tooth'. Me: 'No. She's always had a sweet tooth'. 'Ah yes, it's very common. They develop a sweet tooth.'!!!!! 

However, some people with dementia do seem to develop a sweet tooth. But I have recently learnt that, as people get older, the taste buds begin to disappear (along with many other things!) and, with far fewer taste buds, people tend to favour foods that make the strongest impact, e.g. sweet things. People with dementia are predominantly elderly.......

So mostly it's not to do with having dementia, it's to do with ageing. I definitely know that my sense of taste has deteriorated, and I probably like sweet things more. I am quite old but I don't have dementia.

Another example. Plates of a certain colour are allegedly easier for people with dementia to see the food on. But, guess what? There's no agreement about which is the best colour  -  yellow, blue, red  -  because everybody's different. And the issue could be to do with deterioration in the eyesight (i.e. the actual eyes becoming less efficient) or with problems relating to the link between the eyes and the brain (which are a feature of some types of dementia). So when someone says 'Yellow plates are best for them', they might be right about some of them but, even for those some, the problem could be to do with ageing rather than with the dementia.

There are so many examples of this attempt to portray 'people with dementia' as almost a different species. They are, of course, just people.....who happen to have dementia.

An interesting phenomenon

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

This is quoted in Zeigel's book 'I'm Still Here'. It came to mind when I was taking part in a discussion on an online forum about a common phenomenon (we know it's common as many carers have reported it) which occurs when a person with dementia is confronted with a professional or, less commonly, with someone they don't know, and puts on a 'public face' presenting themselves, quite convincingly. as 'fine', as a person who has no particular problems.

This is understandably frustrating to carers, particularly those who know that when they are alone again with the person they care for, they will have to endure aggression and, sometimes, physical violence. It's also frustrating if they have anticipated that when the professional sees the real problems, useful support will be forthcoming (of course, a positive outcome is by no means guaranteed even if the real problems are observed!).

I was interested in the fact that these brain-damaged people, whose behaviour is normally reckoned to be entirely beyond their control, are apparently capable of deciding on some level to be on their best behaviour, sometimes throughout a lengthy conversation. (It's very common for people, with and without dementia, to answer that they're fine when asked how they are, but we're talking about something much more elaborate).

Whilst recognising the frustration, I was surprised that people didn't seem to realise how remarkable this was. If a person can have this control in some situations, why not in others? Could we, perhaps, persuade them to behave differently in other situations?

Anyway, I was reminded very strongly of the Montessori quote when I read some of the discussion.