Telling it like it is

This article in 'the Guardian' gives an accurate insight into the horrific ways in which dementia can affect the lives of people living with it, and the lives of their carers:

http://www.theguardian.com/commentisfree/2014/oct/28/solve-dementia-crisis-paying-gps

It serves as a good counter-balance to the sanitised view  -  a little old lady who has a bit of difficulty remembering things  -  that is so often presented via the media.

Alzheimer's or dementia?

Someone asked online: What is the difference between Alzheimer's and dementia?

I can understand why the question was asked as the two names are often used interchangeably.

Dementia is not a disease but a set of symptoms which are a feature of many diseases, perhaps the most common being Alzheimer's.

There's a lot more than can be said but that is the basic difference.

It is very confusing that 'Alzheimer's' is used so often when actually 'dementia' is far more appropriate.

I was reading the blurb for the Alzheimer's Show which is coming to Manchester (isn't that's a bit odd, by the way, a 'show'?) and is described as 'the UK's only dedicated exhibition and conference for families and professionals caring for a person with dementia'. So why isn't it called 'The Dementia Show'?

A very unhelpful and unnecessary confusion, I would suggest.

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.

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?

The stages of dementia

I'm increasingly dubious about the 'Stages of Dementia'.  The idea is that the condition can be broken down into stages.  Typically each stage is allocated a list of symptoms.  You check your cared for person's symptoms against a stage and then you know what stage they are at. Simples!

Except that when you speak to other carers or read what they have written you find that often people have a cluster of symptoms which might well include a few from each stage.  If you raise this with a 'true believer' in the stages, they will tell you that you should only view the stages as a rough guide.

It's actually very, very rough.  It seems to take no account of the fact that there are so many different kinds of  dementia  -  possibly as many as there are people with dementia.

And I worry that if a carer is led to believe that the person cared for is in the 'late stages', they will treat them accordingly and this may become a self-fulfilling prophecy.

It's also interesting to me that there are a number of different versions of the stages floating about.  And that they all seem to be based around odd numbers  -  3 stages, 5 stages, 7 stages, never, you notice, around even numbers.  It reminds me of the magical numbers of myths and fairy stories.

Sometimes it's the little things that drive you mad

Twice today, ironically because we've had a nice weekend with one of my sons and his wife, I was quite relaxed and not quite as 'on the ball' as I usually force myself to be  So after handing S a drink I watched her start it and then carried on lighting the fire.  She then tried to put the drink down and, as so often, she managed to put it down on top of something else.  I heard it roll over and fall onto the carpet.

That meant quite a clean up, though as it had fallen onto a rather grubby bit of carpet I at least had the consolation of feeling that this was something I would probably have had to do in the near future.

But how to explain that I did a very similar thing a few hours later!  This time I left S, sitting down at the table, with a drink of fruit juice.  This is usually a bit safer, but you'd think I would have kept an eye on S until the glass was empty in view of the earlier spill.

Anyway, whilst I was happily getting on with the washing-up, S was busily walking up and down the hall carrying the half full glass of fruit juice at an angle that meant that most of it ended up on the wooden floor.  This was rather more annoying as I knew it would be much more difficult to clean up.  Though I know there's no point I did briefly remonstrate with S before remembering that there's no point.  This didn't help, though in the past I would have been much more obviously annoyed and frustrated and she would have been much more agitated.   So that's something positive I suppose.

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.

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.

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. 

What are, and what aren't, symptoms of dementia?

This is the title of a section of John Zeisel's 'I'm still here'. It's all very obvious once you've read it, but it's really helpful to have all this set out so clearly.

Zeisel differentiates between the primary symptoms of Alzheimer's disease, the secondary symptoms and the tertiary symptoms (which may not be symptoms at all, but rather natural reactions to social and physical environments).

The primary symptoms are directly attributable to either cognitive or functional impairments. Memory difficulties are the most obvious example of cognitive impairment but executive function (referring to our ability to organise the complex sequences of activities involved in, for example, using tools and even in the activities of daily life, such as dressing) is also very significant as are speech deficits.

Secondary behaviours would not occur if it were not for the primary symptoms but are not immediate reactions to them. So a primary symptom might be difficulty in controlling ones impulses but if this leads to aggression, as it can do, it isn't the case that aggression is a primary symptom, rather it is a reaction to not being able to handle what is happening to the person. It's important to distinguish between those secondary behaviours which are disturbing to others and those which aren't. There's a tendency to just accept the latter  but it might be quite possible to help a person who is apathetic and listless by involving them in meaningful activities, for example.

Tertiary symptoms are behaviours that may not be symptoms at all. Two examples Zeisel gives are things such as withdrawing from participating in meaningful activities and uninvoked aggression.

Then he discusses the nonsymptoms which he classifies as caregiving nonsymptoms, social environment nonsymptoms, medical treatment nonsymptoms and physical environment nonsymptoms. I'll return to these in a future post.

The reason why this kind of analysis is important is that once you accept the approach it is clear that at least some of the secondary and tertiary symptoms might be susceptible to treatment. And Zeisel points out the difference between cure and treatment: As yet, there is no cure for dementia, but a lot of the symptoms and nonsymptoms are susceptible to treatment.

So many things can make dementia worse

As I've read other people's experiences I have become more aware of the various things that can cause rapid deterioration in a person's dementia symptoms:

Hospitalisation, general anaesthesia, medication (side effects), medication (interaction), herpes outbreaks, constipation, urinary tract infection, undiagnosed pain and dehydration commonly cause people caring for someone with dementia to panic about the sudden decline that they witness. The good news is that in very many cases the deterioration can be arrested and often reversed.

Urinary tract infections (UTIs) are particularly nasty in their effect. Often, people are given broad-spectrum antibiotics which don't deal with the infection adequately. Proper urine testing needs to be done in order to decide which antibiotic is needed.

There are probably other things that I've overlooked. It's very important that everyone involved with dementia care knows about all this. The underlying condition is horrible enough without any further avoidable aggravation.

And of course, the way a person is treated by other people may well influence the course of the disease and the severity of the symptoms.

Centenarians who avoid dementia

This is another example of research that, like the nuns study, suggests that some people avoid or delay the symptoms of dementia 'despite the substantial presence of neuropathological markers of Alzheimer's disease'. This dates from 2004.

One can only agree with the conclusion. I have not discovered yet whether anyone has followed this up or whether, like other promising lines of enquiry, it has been ignored.

Dementia-free centenarians.

Perls T.

Source

Geriatrics Section, Department of Medicine, Boston University School of Medicine and Boston Medical Center, Boston, MA 02118, USA. thperls@bu.edu

Abstract

BACKGROUND:

A small percentage of centenarians, about 15-25%, are functionally cognitively intact. Among those who are not cognitively intact at 100, approximately 90% delayed the onset of clinically evident impairment at least until the average age of 92 yr.

OBJECTIVE:

To review current and past findings related to the prevalence and incidence of dementia amongst the exceptionally long-lived.

METHODS:

Findings from the various centenarian studies, world-wide, are reviewed.

RESULTS:

Neuropsychological and neuropathological correlations thus far suggest that there are centenarians who demonstrate no evidence of neurodegenerative disease. There also appear to be centenarians who despite the substantial presence of neuropathological markers of Alzheimer's disease did not meet clinical criteria for having dementia, thus suggesting the existence of cognitive reserve. Epigenic studies suggest a significant familial component to these survival advantages.

CONCLUSION:

Centenarians are of scientific interest as a human model of relative resistance to dementia.

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.

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.

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. 

Postscript

The passage quoted in the previous post continues with a description of the mother's distress and confusion  - she is left to cry herself to sleep.

The daughter concludes:


It could be that she needs a change in mood medications.


Or (this my suggestion) a thorough review of all her medication and possible interactions and side-effects, with a view to discovering whether the complex cocktail is responsible for, rather than ameliorating, her 'mood'.