Tuesday, 15 April 2014

A sad and disturbing story

This story has been on TV and in various paper.  The Manchester Evening News has an embedded video  -  you can hear the old man's side of the story:

Walter tells his story

It seems clear that the Care Home in question had been under some pressure from the inspectors, the Care Quality Commission:

CQC Report


The Care Home's action may have been influenced by this.

At the very least, there seems to have been an over-reaction by the police and probably the Social Services.

Clearly, when someone has been looking after a loved one on their own for several years they will know a good deal about that person's need and will have been responsible for giving medication.  So what could be more natural than that the carer (the caring doesn't stop), seeing his wife in pain, would administer prescribed medication?

You can understand why some people would rather not grow old.

Sunday, 6 April 2014

That nasty virus rears its head again

The link below is to a research project that links HSV-1 (the 'cold sore' herpes virus) to cholesterol accumulation:

Journal of Biological Chemistry

I would stress that I have not read the whole article.  It is highly technical.  The abstract at the start gives you the gist.

The reason for drawing attention to it here is that it is yet another example of this very common virus being implicated in the kind of damage to the body (in this case to 'hardening of the arteries') that could lead to dementia.

Regular readers of AWD will know that I have posted about herpes viruses a number of times. This link will take you to these posts.

I should stress again that I have no medical training and have made no 'discoveries' myself.  Such research as I have undertaken has been via Google!

Saturday, 5 April 2014

Dementia fact sheets available online

The Alzheimer's Society have a collection of very helpful factsheets available
 here.

Dementia UK also have a very helpful factsheet which manages to pack in a large amount of very useful information into one document here.

x

Thursday, 3 April 2014

On of those more complex posts. I'm afraid.....

....but give it a go.  I'm not for one moment claiming to understand it properly, but I am excited by what it appears to suggest.  The researchers believe that they have found why some people with significant plaques and tangles in their brains do not develop dementia (see nuns study).

Note also the first comment at the end of the main article where the writer states as if it is well known that:  'A sizable proportion of elderly individuals with substantial AD pathology does not appear to progress to dementia...'  You would not think it was well-known judging by the number of times 'the causes of dementia' are discussed without this key fact being mentioned.

Perhaps there is some research hidden away somewhere that explains why some people who have few or no plaques and tangles do develop dementia (i.e. the other side of the nuns study coin)?

Here is the link:
http://www.alzforum.org/news/research-news/no-rest-weary-neurons-protective-factor-stems-cognitive-decline?utm_source=Alzforum+Newsletter+03%2F24%2F2014&utm_campaign=Alzforum+Newsletter+3%2F24%2F14&utm_medium=email

I would welcome comments, particularly from any researchers.

Saturday, 22 March 2014

Recovered memory after general anaesthetic

It's widely known that a general anaesthetic can put your health at risk if you are elderly or have dementia.  But I've read about several mostly elderly people who have come round from a general anaesthetic to find that they have recovered their memory and are able to talk coherently about their past lives in a way that they previously had been unable to do.

This state usually lasts for a few hours and then they revert to how they were before the general anaesthetic.  The carer of one person reported that this happened more than once, i.e. on different occasions.

Obviously, people have questioned professionals about this remarkable development. The response seems to be an acknowledgement that this can happen but no-one seems prepared to try to explain it.

You might think that this is a phenomenon that would be the subject of extensive research.  It isn't.  This is probably because, according to the usual theories about the damage to the brain which dementia causes, this should not be possible and we have already noted that these ubiquitous theories are rarely questioned anyway.

I am particularly fascinated because, as my wife's dementia developed, it seemed clear that the problem was one of not being able to access the memories rather than that the memories had been destroyed.  From what I've read this is not always the case.

It may be that, in cases like my wife's, some, many or all of the memories are still locked away in her brain somewhere but the person can't find the key.  If research could uncover what it is about a general anaesthetic that brings about the recovery of memories, there could be hope for at least some people living with dementia.

One possibility that has been proposed, by someone living with dementia as it happens, is that oxygen might be the key as people who are anaesthetised are given oxygen.

It would be great if someone would fund research into the phenomenon.  But I'm not holding my breath.

Sunday, 16 March 2014

Memory Cafe Directory

On the Alzheimer's Society's excellent forum Talking Point, somebody very helpfully posted this link:

http://www.memorycafes.org.uk/

Obviously a database like this is only as good as people make it by registering events.  But it could serve a very valuable purpose as nearly all the activities we have ever attended would be far more effective if they could get more people along.  They usually advertise extensively to very little effect.  This is just one slightly different approach which could help.  One would like to think that, over time, more and more people would use it and pass on the details to potential clients who may not have online access or skills.

Thursday, 13 March 2014

What's in a name?

The Alzheimer's Society seems to be renaming itself 'Alzheimer's Society' (i.e. dropping the definite article). Of course they may do what they like with their own name but it may not catch on.

An employee of AS was recently interviewed on the BBC and was introduced using the new name.  He then used the new name, but it's obviously unnatural, even to an employee, and later he used the old name.  When the interview finished, the presenter who'd introduced him reverted to the old name herself.

In any case, I am puzzled as to why Alois Alzheimer's name is still attached to the disease.  He was the first person to diagnose a case of what we would now call early/young onset Alzheimer's Disase.  Interestingly, he distinguished the disease from 'pre-senile dementia', indicating that dementia was recognised as a common problem as people got older but previously not recognised properly in younger people.

Alzheimer examined the brain of his patient post-mortem and sketched pictures of the plaques and tangles.  Decades later these were recognised as more or less identical to the plaques and tangles seen when the brains of elderly senile patients were examined.  It was decided they had the same disease.

Yet as time has passed it's become clearer that there are many, many, diseases that cause dementia.  Some of them are similar to each other and some of them are not. In general public discussion 'dementia' and 'Alzheimer's disease' are used interchangeably which is not helpful.

Equally, it is assumed that the plaques and tangles are always a marker of the disease and a great deal of research has been devoted to trying to remove the plaques and tangles.

Yet as the not-famous-enough nuns study shows some people have the plaques and tangles but don't have dementia and some people have dementia but do not have significant plaques and tangles.

It's possible that the emphasis of much research has been misplaced and that other possible research areas are being overlooked.

So how helpful is it that Alzheimer's name is still so well-known?

And to end where we began, it's probably time for the Alzheimer's Society to adopt a more sensible name.  Or, better still, lead a move towards the amalgamation of the various dementia charities.  One national dementia charity could become very influential.


Wednesday, 5 March 2014

A sense of achievement

Being a carer is stressful, even when the person you care for is as amenable and calm as S. When I talk to other carers it's clear to me that some of them, like me, are helped to keep going by trying to solve the problems that the condition throws up or those that arise when you try to lead as normal a life as possible.

For example, people ask me why I continue to take S away in our camper van, especially as we have gone abroad at least once each year even since she was first referred to the memory clinic and we still do this. First, of course, I have to say that I wouldn't do it if S objected. But not only does she not object, I am sure that, like me, as well as still being able to enjoy aspects of the whole experience, she feels a real sense of achievement and often smiles and gives other signs of satisfaction when I'm talking to other people about our adventures.

Another example: I never expected to be writing about bowel habits on this blog but.....move away now if you are offended. I always describe my wife as doubly incontinent as that is how she would be described medically, and the continence specialist to whom we were referred assumed that this would now be a permanent symptom of the condition. Urinary incontinence usually strikes first and those who believe in 'the stages of dementia' put it in the later stages and remark that late stage dementia often involves double incontinence.

I've always thought it odd that for S things developed the other way round.  Like so many people, Sue had a longstanding tendency towards constipation. So when, three years ago, she started to have soiling problems, we used any number of laxatives and other drugs which various medics swore by. They turned out to be worse than useless. They simply complicated the issue and, whatever dose of whatever drug you used, you never really knew if there was any progress. Sometimes there seemed to be, but then you were suddenly back to square one.

Fast forward three years. For weeks now, there hasn't been a problem. S has emptied her bowels around 4 times a week and is completely clean all the time, i.e. 100% goes down the pan. This hasn't been achieved suddenly of course. There have been false hopes in the past but overall things have gradually improved over time.

How has this been achieved? I expect that this is what some carers reading this will want to know. So these are my tips, mostly discovered by trial and error:

1)  Regular exercise, e.g. we aim to walk at least 5 miles a week whatever the weather and we usually exceed this target.
2)  Vegetables are very important. We tend to eat a lot (we don't eat meat). Some vegetables are extremely effective - carrots, sweet potatoes, squash, onions all work well for S so I concentrate on these every second and, if necessary, third day.
3)  Insoluble fibre, particularly wheat bran and anything that contains it, has to be treated with caution as it can have exactly the same unwanted effect as the drugs.
4)  Soluble fibre, in particular oat bran, is great and much of the improvement can be traced back to when we started to have porridge for breakfast - real porridge not instant refined muck.
5)  We discovered that immediately after the evening meal was the optimum time for a successful visit to the loo.  If there is no result at first, I have found that a fruit dessert, e.g. apple crumble, nearly always does the trick.
6)  Before every meal I give S fruit finger foods  -  mango, melon, apple, pears. I've always understood the importance of fruit but this fairly recently introduced tactic means that S eats more fruit than she did before.
7)  Obviously, it's also important to keep hydrated and this is sometimes difficult  -  S has to be watched to avoid spills and she sometimes drinks very slowly.

I'm sure none of the above is particularly novel.  And what has worked for S may not work for others but I hope that they may be of some use to someone.

Now I'm turning my attention to the urinary incontinence though I reckon this will be an even harder nut to crack, especially as S has used pads for so long

Sunday, 23 February 2014

Looking Back

I was recently looking through my wife's last filofax because I needed her national insurance number. She used the filofax very successfully for a few years to help her keep organised and to remind her of things she needed/wanted to be able to remember. I didn't find the NI number there, but I did find all sorts of details that she'd jotted down over the years (we replaced the dairy pages each year in the leather case but kept all the other pages). The handwriting ranges from normal (she had lovely handwriting) to scrawls that were very hard to decipher and often contained repeated letter and syllables.

Amongst the things she wanted to remember are family birthdays then (later) family names, her daughters' favourite animals, places where she lived and worked, etc.  Reading these notes, or just thinking about them, brings tears to my eyes.

Perhaps the most moving notes are references to her youthful travelling adventures. At the age of 18 she did VSO in Ethiopia and was introduced to Emperor Haile Selassie! She also drove coaches overland to the Soviet Union.


The things she was trying to remember are amongst those that make us who we are.  No wonder she wanted to cling on to them.

Now, needless to say, she cannot drive, read or write, and her conversation is very limited. But, perhaps because of her personal history, she still gets some pleasure from travel, despite all the difficulties she has to overcome.

You can look back at the earlier phases. Difficult as they were to come to terms with at the time, you would give anything to be back there now. 

Of course, we are both lucky. My wife is generally calm and contented. She is physically healthy. I am deeply affected by some of the stories I read online from people who are not so fortunate.

But, for all those affected, it's a horrible disease. And to see aspects of the person disappearing is perhaps the hardest thing.

Sunday, 16 February 2014

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?

Monday, 27 January 2014

Suffering from dementia?

As you will have gathered from my previous post, I don't believe my wife is suffering now.  Of course, if her pre-dementia self could see her now and realise all that has been lost, it would be very distressing  -  to her pre-dementia self (as it is for me if I think about it).  But as she is now, she isn't aware of what she has lost so isn't distressed about that.

This article by a person living with dementia questions the common usage 'suffering from dementia':

http://www.thanksforthememory.org.uk/announcements/living-with-alzheimer-s-not-suffering-with-it

I think such articles serve a very useful purpose in reminding us that not all people living with dementia suffer.

However, it is clear that many do.  And certainly there have been points during my wife's journey when she has suffered, as my earliest posts demonstrate.