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.

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, S 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

People who never go outside

A topic raised by this article:

http://www.itv.com/news/2013-09-03/my-name-is-philip-and-i-have-dementia/

Some of the reasons why people don't get out are suggested in this article.  But it's not, of course, a problem that's confined to people with dementia.  Many elderly people are reluctant, or feel unable, to go out.

There are some schemes  -  such as 'Good Neighbours'  -  which involve, amongst other things, volunteers visiting people like this and taking them out.  Clearly, there should be a much greater effort to ensure that no-one feels trapped in their house.

Cameron used to promote the 'Big Society', a concept which encompassed schemes like these.

I don't think the words 'Big Society' have passed his lips for a long time though.

Sad.