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.

Accentuate the positives

On the journey from mild cognitive impairment and on through various stages of dementia, discussions with professionals, at which patients are very often present, tend to focus on deficits. I have been very aware of this recently after help from an occupational therapist whose aim was to see what S can still do and how her skills can be developed and extended. She concentrated on putting socks on and teeth-cleaning though some of her observations and advice could be generalised to other activities. This was helpful, not only because she was pleasantly surprised at S's ability to respond to requests despite the distraction of her auditory hallucinations, but because S was receiving encouragement and a positive response. It made me realise that we haven't met many professionals who have been as positive. It is more usual for them to ask questions which highlight deficits and then to suggest to carer and patient that this is only to be expected. There's an underlying fatalism that doesn't escape S's notice.

I have always believed that people, whatever their age and condition, respond to other people's expectations so I can understand why some people with dementia would rather not see 'doctors'.

The message I take from all this is that it does no harm, and may do a lot of good, to concentrate on what people with dementia can do rather than what they can't.

Belts and braces

I am interested in some of the ideas discussed by Dr Mary Newport, and  her website is worth a look for anyone interested in alleviating dementia symptoms. This link will take you to a document which itemises the improvements she has noted in her husband since she has been giving him coconut oil:
Click here to download the Word document (you'll open a box allowing you to save it wherever you want to.)
One could fairly say that Dr Newport majors in coconut oil.

The problem though is that, in addition to the coconut oil, she has been giving him any number of dietary additives/supplements as well as several conventional drugs. Among the drugs, she has been using Valaciclovir, which is a supercharged version of the anti-viral drug Aciclovir, which S has been taking during the time when she has made marked improvements. So Mary Newport also believes that the herpes virus might be a contributory factor.

With an approach that involves so many different belts and three kinds of braces it would seem quite impossible to separate out the factors(s) responsible for the improvements. One can easily understand the thinking  -  let's try anything that might help  -  but is it really necessary, or desirable to take them all at once?

Also, I can't find much about the kind of life Mary and Steve lead. This could also be relevant.

The situation so far in summary

As more and more people are finding and reading this blog (thanks!) it seems appropriate to summarise briefly S's current situation. When I started this blog we were in a desperate state and receiving very little support, except that family and friends rallied round.

We're in a much better state now as, against all the odds, S has made something of a recovery from whatever was causing her dramatic decline in the autumn. This post sums up the improvements:  http://adventureswithdementia.blogspot.co.uk/2012/04/how-s-has-improved.html
whilst possible reasons for this improvement are discussed here: http://adventureswithdementia.blogspot.co.uk/2012/04/possible-explanations-for-ss.html

One of the scary things about this condition is that no-one knows what's round the corner so we (and I do mean we) are as determined as ever to carry on enjoying life as much as possible. We're planning a motorhome journey to Venice in July to celebrate my brother's 70th birthday. Wish us luck!

Is a diagnosis necessarily a good thing?

A neurologist is quoted on an online forum as saying to someone who was impatient about the fact that it was taking her so long to obtain a diagnosis: 'no diagnosis is better than a wrong diagnosis'. So here we have a sensible neurologist  -  pretty remarkable. 

But having thought a lot about our experience, I would go further. I would even say that, depending on who you are, the road to a diagnosis might well be one on which it's better to travel hopefully than to arrive. S and I were somewhat reassured to be told at various points that the 'obvious' diagnosis was not necessarily correct. In fact, we were even told with some certainty that S definitely didn't have Alzheimer's. Though it was clear many years ago that she had some form of dementia we found that it was possible to 'get on with our lives'. One diagnosis and 12 years later, I am happy that we had all that time together, sharing some great experiences, thinking that things might not be so bad after all.

Some people who are desperate for a diagnosis want it so that they can 'get on with their lives'. But you have to do that anyway and I would have thought it's a bit easier if you have some hope that you might not have a terminal disease (other than the one called life that we all have).

Some people believe that once they have a diagnosis, the cavalry will arrive with loads of support. Sadly, they are often disappointed at the length of time that takes. And people have sometimes been told, on diagnosis, that nothing much can be done for them.

Looking back, I don't think that an 'early diagnosis' would have been a good thing for us at all. I actually believe that we're still benefiting from the fact that we had so many good years. And all that time, S had Alzheimer's  - apparently. Well, maybe we can still have some good times.

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.