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. 

Who am I caring for?

Am I caring for a dementia sufferer?

Or am I caring for a woman who has:
daughters (and sons-in-law),
grandchildren,
a husband,
a father who's still alive,
a brother and sister-in-law,
stepsons (and step daughters-in-law),
many friends,
an interesting and varied career to look back on,
a deep love of music,
many wonderful, and some very sad, memories,
etc, etc, etc,
and who now has dementia?

There is a difference.

New readers catch-up 2: Causes/contributory factors

In my effort to try and understand the disease, I've looked so far at three possible causes/contributory factors. Unlike some of the stuff that you can find online, these have all been discussed and researched by perfectly reputable scientists, and at least two of the three were taken seriously by the memory clinic and its very highly respected head.

Just click on the links which take you to various posts on this blog:

1) Lyme disease

2) Tamoxifen  and here  mice experiments

3) Herpes and here

(There's more on Herpes and the best way to find it all is to put the word into the search box (top left) and click 'enter')

Empowerment - and disempowerment

One of the most frustrating things for someone with dementia must be the sense of losing control, of being unable to do things for yourself, of having to rely on other people for help with the most personal of tasks. Just the thought of being in this situation is pretty scary for most people who aren't in this situation.

Even if we weren't able to work this out for ourselves, people with dementia who are still able to do so tell us that this is the case. Much of the agitation and aggression commonly demonstrated by people with dementia who no longer have the language skills to explain their feelings probably arises from this frustration.

It might therefore appear strange that one common method of communicating with and dealing with people with dementia stresses the idea that they can feel secure in the knowledge that all their needs will be taken care of, that they no longer need to worry about doing anything for themselves. Is this what you wold want to hear in that situation?

To me, the approach appears deeply flawed. You're telling people who feel totally disempowered that they ought to enjoy that feeling. How frustrating is that!

More importantly, the best way of losing a skill is to stop trying to use it. If everything is going to be done for you, the few things that you can do for yourself will soon fall away. And your carers will have no idea of what you might be able to do with a little help and encouragement.

It's very easy for a carer to fall into this trap even if they don't accept the ideology. In many ways, life appears to go more smoothly if you do everything for the person with dementia because you can do almost anything more quickly and more efficiently.

But then you'll wake up one morning and realise that there's nothing they can do for themselves.

New readers start here

As the blog is nearly one year old, it occurs to me that as new readers come along, it could be helpful to point them towards some significant posts that chart the perhaps unusual developments in my wife's condition.

This is one of the earliest posts:

http://adventureswithdementia.blogspot.co.uk/2011/10/slipping-away-from-me.html

This was one of the lowest points, though looking back, my anger probably helped me through this period:

http://adventureswithdementia.blogspot.co.uk/2011/11/dreadful-negative-experience.html

This was another awful time:

http://adventureswithdementia.blogspot.co.uk/2011/12/today-is-special-day.html

In the New Year, things started to improve:

http://adventureswithdementia.blogspot.co.uk/2012/01/bit-calmer-some-things-happening-lot-of.html

This was an interim 'progress report':

http://adventureswithdementia.blogspot.co.uk/2012/02/progress-report.html

I'll leave it at that for now, but post further selections on the near future.

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

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.

People with dementia have a lot in common with people who don't

This may sound obvious, but it's interesting to realise that many of the things that people with dementia do, and which sometimes attract comment, are things that people who don't have dementia also do.

Two recent examples that I've come across online:

Someone noted that their husband cried when moved by music. This is very common. In fact, I would think that most people at one time or another have experienced this themselves. In the case of a person with dementia it could be considered something worthy of celebration that this happens, as people with dementia can become apathetic and fail to respond to most external stimuli.

It's well known that many people with dementia talk to themselves and/or make noises when, for example, they are trying to concentrate on something. So do many, if not most, other people. Admittedly, people without dementia often talk to themselves silently but it's not uncommon for them to do this aloud.

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.

Could this be the answer?

This suggestion may help some people. In the long run. Unfortunately, George Monbiot who wrote the article says he has had the greatest difficulty understanding some of the research so I reckon most of us will have to take it on trust for the time being.

http://www.guardian.co.uk/commentisfree/2012/sep/10/alzheimers-junk-food-catastrophic-effect

My worry would be that, whilst the suggested cause could well be applicable in some cases, or at least be a contributory factor, one can see how all people with dementia might be branded as consumers of junk food. Blaming the victim is all too common in matters of health, particularly where the media are concerned.

Another intriguing snatch of conversation

As I've mentioned previously, I fall asleep nearly every night to the sound of S talking to, and laughing with, her 'friends'. I am quite happy about this and it doesn't bother me really. Occasionally, I can't help 'tuning in' to what S is saying, even though I'm trying to get to sleep.

Last night when I was just about off, I was suddenly aware of this conversation: 'So is it good or bad?' (laughter) 'I don't know' (a gale of laughter) 'I think I'll go half and half!' (even louder laughter) and then...'Brilliant!'

I've no idea what she was talking about. But what does it matter if she's so happy?

More conversation

A couple of day ago, S announced, 'She's gone!'. I'm very familiar with this. Normally it's a good friend that's gone. S used to be inconsolable about this, insisting that the friend would not come back. It hasn't been such a problem recently, but I'm still alerted by the phrase as it has led to such agitation in the past.

However this time it went: 'She's gone! My friend....to Venice.....which is wonderful for her!' No upset, no agitation.

S loves Venice. Two years ago we went there together and we were near Venice this year though as it was in July and we knew it would be very hot and very crowded we gave it a miss.

This happens more often now. A conversation will start off sounding ominous and will develop in a way that suggests there will not be a happy ending. But then things turn around and end happily. The example here is the most concise version I've heard.

My favourite words of S's are probably: 'Exactly right!' and 'Brilliant!', both of which can conclude some saga of misunderstanding or hostility.

The myth of intelligence

It may not be immediately be obvious how this post is relevant to dementia, but bear with me.

I have always thought that our society is mistaken in being so in awe of 'intelligence'. This view has been strengthened by the current controversy over the GCSE 'moving the goalposts' fiasco. Regardless of the rights and wrongs of that issue, much of the discussion has accepted the need to have an exam at 16 which will sort sheep from goats and correctly identify the most 'intelligent' who will become the movers and shakers of our society. We're constantly told that universities and employers are interested in the 'best' (by which is meant 'most intelligent') students.

In fact the exams as currently formulated are largely memory tests, i.e. slightly more sophisticated than the memory tests given to people who might have Alzheimer's or some other kind of dementia. 'Who is the prime minister?' is a common question that's asked of 'dementia suspects'. I'm indebted to someone posting on an online forum for passing on novelist Iris Murdoch's answer (she had Alzheimer's): 'I don't know, but does it matter?'

The answers to so many exam questions are taken to be indicative of 'intelligence' in the same way that knowing who the prime minister is a potential 'get out of jail' card for the dementia suspect. This is, if I may say so, a bit mad. What does the ability to answer this kind of closed question really tell us about the person, other that that in these cases they remember or they forget? 'Does it matter?' is an appropriate response in all cases.

Not surprisingly, in the public consciousness intelligence and the memorising of facts are seen as synonmous. Thus contestants on 'Who wants to be a millionaire?' routinely describe the people they've chosen as friends in 'phone a friend' as 'very intelligent'. Now that almost every fact that you might wish to know is a few keyboard taps away, this confusion might eventually fall away. Then people can start finding out about, for instance, Gardner's 'multiple intelligences'. But I digress.

I think that one of the reasons why people with memory disorders/dementia are treated (and I realise that word has more than one meaning) so badly is that 'intelligence' is prized so very highly  -  this is the other side of the coin. No memory? So no intelligence, no brain, no humanity.

We come back again to personhood. And there is a link also to education and preparation for life. If I'm right, and there are things that are more important than 'intelligence'  -  the ability to consider the needs and views of others, the ability to form relationships, the ability to cope with disappointment and tragedy, the ability to understand other people, the ability to 'read' situations from non-verbal clues and many more  -  then these things should have at least as much of a look-in, as far as education is concerned, as 'intelligence'. Very difficult to include in league tables but in reality vital abilities for many employees.

It is so much easier to relate to people with dementia, to appreciate their personhood, if you can escape the myth of 'intelligence'.

S's conversations - an update

In a much earlier post, I mentioned the nature of S's 'conversations' with her 'friends'. There have been some changes since then.

Generally, though they are still pretty repetitive, they are not so constant and she spends longer just sitting quietly, paying some attention to whatever is on the radio or TV from time to time, apparently quite calm and happy. She does get agitated, but not nearly as often or as dramatically as she used to and often the agitation, usually accompanied by walking up and down, is a signal that she needs something, the loo or a drink, e.g.

The conversations usually seem to take place in a school setting (she was a teacher). Sometimes she is the teacher and at others one of the kids. There's an awful lot of apologising: 'Oh...I'm sorry!' though it's not always possible to tell whether it is S or the person she is talking to who is doing the apologising. 'Oh God!' is another very common exclamation though these days it doesn't sound nearly as serious as it used to.

A lot of it concerns making arrangements: 'Tomorrow. We can go for a walk or something.' Misunderstandings also figure largely: 'Oh I see...I'm sorry', 'No! I said....'.

Sometimes a perfectly formed statement jumps out: 'Yes, it is good, but it's not half as good as it could and should be.' Where did that come from? Did someone say it to her sometime? Did she say it to kids? (Doesn't sound like her from what I know of her approach.)

I still find it tedious at times. But things could be, and have been, so much worse.

Unanswered questions

Browsing online forums, I've seen two interesting questions raised. Neither of them has been answered. In fact they've been more or less ignored.

The first questioner, whose parent has vascular dementia, asked about the possibility of rehabilitation. One can see where she is coming from. Vascular dementia is often described as a series of mini-strokes (though some of them are not so mini it seems). We frequently hear about stroke patients who appear to have lost many of their abilities but gradually regain them with intensive help. So why, apparently, is no attempt made to give similar help to vascular dementia patients following a mini-stroke. They are often described as typically 'plateauing' after each mini-stroke and this would seem to be the appropriate time to attempt to help them make good some of their deficits, at least partially.

If I'm right in believing that this is rarely, if ever, attempted is it because the assumption is that any ground regained will quickly be lost when the next downturn occurs? Is it down to lack of resources? It would be interesting to know.

Another person asked about the possibility of counselling to help people with dementia. To those with no experience of family members with dementia, this might seem a silly question. It's not, for at least two reasons. These days, some people are often diagnosed quite early  -  at a time when they are able to communicate pretty adequately and when they often have a fair degree of awareness of their condition. There are also people that one comes across who have the ability to communicate effectively even with people who are at an advanced stage and who could probably help them in a 'counselling' way.

Actually there do seem to be some pockets of good practice in this respect, but mention the idea to most professionals and it doesn't seem to get you anywhere.

It amazes me that, given conditions for which there is no cure, so little effort is being put into developing effective treatments, other than into drugs which help some people to some extent but also often have unpleasant side-effects.

S's sense of humour

S's sense of humour is very much intact. Sometimes I have no idea what she is laughing about  -  when I go to bed and she's engaged in conversations with her 'friends' which provoke regular gales of laughter, for example. (I don't mind this at all, in fact it's a very nice soundtrack to fall asleep to.)

But often she makes and enjoys jokes. Today, her care worker was taking her for a routine appointment at the GP surgery. She'd never been before so I started giving her directions for walking  - it's not far. She preferred to drive, so I gave her the slightly different driving directions. Three phone calls later (the last of them from a mile away from the destination) I realised that the surgery would have by then closed for its (very long) lunch hour so they should come home. When they were back they were both in very good humour. P, the care worker, told me that she had just said to S, 'Would you give me a job as a chauffeur?'. S had looked at her and said, 'Hardly!'.

She also said that S couldn't tell her how to find the surgery but knew they had gone wrong, which I thought was interesting.

S also enjoys comedy programmes on TV. We watched 'Would I lie to you?' last night and she was clearly following it all the way through and laughing her head off.

The important point for me is that people who ask her questions and get what appear to be nonsensical answers, would have no idea that she could do these things and probably wouldn't believe me if I told them.

Are people with dementia capable of new learning?

Yes!

Despite the fact that it's often stated that they aren't, my own experience tells me different. During the course of S's illness she has had to adapt to all sorts of changes. Sometimes, this has proved more difficult than at other times, but new learning has certainly taken place. Several years ago, we bought a motorhome. We have travelled over 30000 miles in it and have recently returned from a trip to Italy. S has had to learn all kinds of things as a result from, as an example, how to get into it (you have to climb up, rather than lower yourself into your seat as you do with most cars) to how to get onto the bed  -  from one end rather than the side.

But forget about S. It had already occurred to me that when people go into care homes it takes them a while to 'settle in' but after a time they nearly always do. What is settling in but new learning  -  new people, new procedures, new routines, new furniture, new toilets etc, etc, etc?

I was therefore heartened to see that John Zeisel in his book 'I'm Still Here' makes exactly the same point. His example involves a resident who gets angry when someone sits in 'her chair'. Other residents know it is her chair and know what her response will be. They have learnt, just as she has, that it is her chair.

Of course, there will come a point when new learning may be hard to see or non existent.

But there is all the difference in the world between treating someone as incapable of learning anything new, and treating them as potentially open to learning from new experiences, like most other human beings.

I read on an online forum, 'as is well known, people with Alzheimer's are incapable of new learning'. Like many of these well known 'facts', this is actually another of the all too prevalent and damaging myths about the condition

Thought for today

Or any day:

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

Quoted by John Zeisel in 'I'm Still Here'

The more we discover about the workings of the human brain, the more miraculous it appears. Even a brain damaged by disease is capable of amazing things.

Personhood

I've mentioned personhood previously, and this is one of the posts that I'd urge everyone to read:

http://adventureswithdementia.blogspot.co.uk/2012/04/person-is-more-than-their-cognitive.html

In 'I'm Still Here', (see previous post), John Zeisel poses a question that should really stop us in our tracks: 'Does a person have to speak intelligibly, to remember the names of recent prime ministers, or to be independent in caring for him or herself in order to be a person?'

There's only one answer to that.

But accepting the answer intellectually, as most people who aren't neurologists would, doesn't necessarily make it certain that you will always remember the answer and act accordingly. As I've indicated at various points in the blog, I read what some experts say about people with dementia and wonder if they spend much time reflecting on the nature of 'personhood'.

This may be the book I've been looking for

My son mentioned that this book  -  'I'm Still Here' by John Zeisel  -   had been recommended as an inspiring read at a course he attended  -  not a course about Alzheimer's. I read the reviews on Amazon and decided to buy it there and then. I've only read the first chapter so far but the whole book is about a very positive, person-centred approach to the business of caring for people with dementia. I'll try to reserve judgement until I've read the whole book, but so far I'm very impressed. It looks like the book that everyone should read.

Anyone with a Kindle can try a free sample (which will probably be the first chapter that I've read).

Just what disabled people need

An article in yesterday's Guardian appears to confirm that the Government's new approach to the assessment of people with disabilities is to rig the system so that a pre-determined percentage of people applying for benefits will be refused any benefit. The government have always denied that this is their policy but it seems that the secret filming of training given to assessors shows trainers warning trainees that they will need to fail a fixed percentage. As usual in these cases, Atos (the private firm responsible for these assessments) and the government deny that any such agreed percentage exists. In the light of the filming, this is an absurd response. Read the full story here.

Interestingly the article concludes by noting that, on a separate but related issue, the high court has granted permission to two disabled people to bring a claim for judicial review against the work and pensions secretary to challenge the operation of the Work Capability Assessment, on the grounds that it potentially discriminates against claimants with mental health problems. There is great concern that the new system (like the current one) has not been designed to assess people with dementia, nor other people with mental health problems, so could well underestimate the problems such people face.

No further comment required...

Please share this photo guys @heardinlondon @owenjones84 @josielong twitter.com/MissEllieMae/s…
— Ellie Mae O'Hagan (@MissEllieMae) July 27, 2012

....but for those who haven't been watching the opening ceremony there was a segment celebrating the NHS and someone has understandably been inspired to tweet this pictorial comment.

One way in which people become institutionalised

Since we started attending events and sessions organised for people with dementia, we've got to know a fair few of the people that turn up regularly at the same places as us. One of them recently disappeared from view. It turned out that she had been living with the family of one of her children and has now, for reasons unknown, gone into a care home or possibly into sheltered accommodation.. Now this woman, and I've had the opportunity to observe her in various settings, does not come across as anything other than pretty old and a bit confused. She can hold perfectly sensible conversations and take part in all sorts of activities  -  singing, dancing, playing musical instruments, playing board games, etc.

I know there is an argument that it is best for people to move into care sooner rather than later as they are more likely to be able to adjust and be contented. But I can see no reason why it is necessary for them to immediately drop all their usual activities, and have no further contact with friends and acquaintances they may have known for years. I do know she still lives within easy reach of all the venues and I've even offered to give her a lift. But what surprises me is that the relatives don't seem to have considered what effect this sudden cessation of activities and friendships might have. We know the disease changes people, but why is it necessary to add in additional completely unnecessary changes?

A landmark

Whilst I was away on holiday, this blog passed the 5000 page views mark. I'm pleased that so many people have found my efforts of interest, also that a fair proportion of readers have read multiple posts.

By far the most read posts are those on the possible relationship between dementia and the herpes virus. This could be because such a large proportion of the population carry the herpes virus and these people are concerned about a possible link. I think it's important to point out that there's no suggestion that being a carrier means that you will experience dementia at some point in your life. First, no-one has suggested that all dementia is linked to the virus and, secondly, it seems clear that other factors must also be involved in the case of carriers of the virus who do experience dementia.

If you want to read all that I've written about the herpes virus, the simplest way is to put the word 'herpes' into the search box at the top left of the blog main page and press return.

Incidentally, I'm using 'dementia' here rather than 'Alzheimer's' because I'm becoming increasingly suspicious of the whole business of diagnosing a disease that can only be confirmed post mortem. You have only to read people's experiences online to discover a common picture of shifting diagnoses and people allegedly having two or more different kinds of dementia. There can't be many other fields of medicine where there is so much confusion amongst the 'experts', who can't even decide whether the physical signs they see in brains are the causes of the disease or the body's attempt to fight it. It's incredibly frustrating.

A very good holiday

Regular readers of this blog will have noticed that I haven't posted in quite a while. There's nothing sinister about this. In fact, we've been on holiday. To Italy. We drove in our modest motorhome, covering around 2500 miles. There was a time last autumn when I was pretty certain that we would never go away on holiday again.

So it's been an amazing and memorable experience. I was prompted to consider this particular adventure by an invitation from my brother and sister-in-law to help them celebrate a significant birthday by meeting up with them and friends and family for a few days at a villa in Italy. S has improved so much over the last few months that I became increasingly sure that we could make it. It's been hard work at times, but that's just how life is now, wherever we are. In some ways things are simpler and more straightforward when we're staying in the van. S has spent many months living in it in the years since we bought it and usually remembers everything she needs to about how it all works.

Having both decided that we wanted to go, the best plan seemed to be to make a real holiday of it, not just try to race there and back, so we've also spent some 'rest days' at nice places we've visited before like Lake Garda and Lake Como. We've had some very long days on the road, not by design but because we hit some awful traffic and got lost a couple of times. So we have been 6 or 7 hours 'on the road' some days. This hasn't troubled S at all.

I've got a lot of sorting out to do now, but in due course I'll return to this experience. If you've read about how S was when I started this blog, you'll probably be as amazed as me at what we've done. And I do mean we. At times on holiday, S was as contented as I've seen her in years. But, like me, she's also glad to be home.

Tamoxifen again

I've blogged about the possible link between Tamoxifen and memory/dementia:
here and here.

This is a link to an interesting article on this topic:
http://www.sciencedirect.com/science/article/pii/S0091305701006566.

Another interesting article  -  see the abstract at the start:
http://www.faceblind.org/social_perception/papers/zbasseda/zbasseda-Tamoxifen.pdf

Perhaps most interestingly, Tamoxifen appears to be a drug that researchers turn to when they wish, for whatever reason, to impair the memory of mice: as this link shows  -  and it's an interesting article in its own right: 'After being given tamoxifen (perhaps best known as a breastcancer drug) for eight days, an otherwise normally developing mouse had more than 80 percent fewer new neural stem cells in its hippocampus (a structure in the brain's frontal region linked to short-term memory).' And whereabouts in the brain is Alzheimer's first detected? In the hippocampus, I believe.

Beacons of hope

There will be people who come across this blog hoping to find some answers, and maybe some hope.

As anyone who cares for someone with dementia, or who has dementia will know, answers and hope are in short supply.

However, in my search, I have found some glimmers of hope  -  if not for S, then maybe for others who are just starting out on this journey. For new or irregular readers here are links to some stories and summaries which I have found interesting and, in some cases, inspiring.

Morris Friedell

Herpes       more     the research     a possible herpes vaccine
(It's worth noting that 'the research' is the most viewed post in the whole blog.)
Steve and Mary Newport

Centenarians

The nuns' study

Life on hold

On online forums carers, and not just carers for people with dementia, complain about their life 'being on hold'. It's pretty obvious really  -  life is never on hold. The sun rises and sets, you get a day older, your life goes on. What people are really saying, I guess, is that they are unable to live the life they would wish because of the circumstances they find themselves in. But this is a feeling that many, many people have, not just carers. You could say that it's part of the human condition, one of the things that makes us human even  -  it's not a problem your cat has.

It's more understandable maybe in carers than in whinging teens or workaholic thirty somethings who, in all likelihood, still have much of their life ahead of them (though we mustn't forget that people of all ages can have caring thrust upon them).

There's no solution of course  -  you're bound to feel like this at times. But if you try to carry on finding life interesting, even the difficulties that you're facing and possible ways of lessening them, and to get satisfaction from something that in more normal circumstances might pass unnoticed, like seeing the person you are caring for laugh (if they can) or actually completing a task on your mental 'to do' list.

And then of course there's music, friends, family, reading, memories..........

And that life that you could have been leading might not have turned out too well anyway.

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.

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.

More good stuff

We bought a small motorhome in 2006 when I retired from full-time work. Since then we've used it extensively and travelled as far as Hungary and Italy. When S had her sudden decline in the autumn I thought we would never go away in the van again. 


Last week, with S's full agreement and approval, we went on a short motorhome trip to Snowdonia. S seemed to slip seamlessly into motorhome mode again and in fact the two nights were better than the last few times we used the van last year. We met up with family which helped but also spent several hours confined in the van by a series of showers. We successfully chilled out to our own music and the radio. When we got back home we both thought it had been a big success.


This week, we went to the dentist for check-ups which I thought would be very difficult. It wasn't at all. S got into the right position on the chair, opened her mouth wide enough for inspection and a scale and polish. The dentist is superb, which is a great help, but S was just amazing, actually much better than the last inspection over a year ago.


I keep reminding S how well these things went and she certainly understands that these are significant achievements, even though when we saw a speech and language specialist this week (more on this later) she was unable to say the names of her two daughters. 


As I suggested in the previous post, there's the person and then there's their cognitive abilities.

A person is more than their cognitive ability

It's obvious really, but this extract from a Gransnet Q & A with Professor Alistair Burns, the government's 'dementia tsar', explains with great force and clarity why a person-centred approach is vital when dealing with dementia  (and the same could probably be said of all mental health conditions).

A criticism of the focus on dementia is that it puts too much emphasis on what is lost (memory) and not enough on what endures.

This plays into ageism by creating the idea that life is a process of inevitable decline.

The obsession with cognitive ability - which is actually prevalent throughout life, from the classroom onwards - leads us to a very narrow view of human nature and how to age well.

Do you agree that stereotypes of dementia are creating the idea that cognitive ability inevitably falls away in middle age? And that this obsession makes it very difficult to respect the selfhood of older people?

How do we treat the disease while avoiding this negativity?

Dear bridgeofsighs,

You raise a very important point in terms of re-ordering the way in which we regard and treat people with dementia. While we do know that cognitive ability (predominantly memory) does decline with age, there is the assumption, which as you say is completely false, that dementia is part of normal ageing. This brings up the profound therapeutic nihilism to which you are referring and, as you say, can lead to a narrow view of human nature.

You raise the key point of selfhood of older people. In dementia we call that personhood and the preservation of personhood enshrined in person-centred care is a key aspect of improving the treatment of people with dementia.

In terms of your last question, about treating the disease while avoiding this negative view, our awareness campaigns - while directed at alerting people to the early signs and symptoms of dementia - will help in this regard. The honesty and openness of people like Sir Terry Pratchett in declaring his Alzheimer’s and how he is living well with dementia is also an important part of rebuffing this negativity.

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'.

No comment required...

Mom hasn't been feeling good the last couple days,

I wonder if her medication has something to do with it.

She takes:

Propulsid 20 milligrams, twice a day

K-Dur 20meq SA TAB, once a day

Synthroid 0.025 milligrams, once a day

Imdur 30 milligrams, once a day

Procardia XL 60 milligrams, once a day

Prilosec 20 milligrams, once a day

Aspirin 325 milligrams, once a day

Betagan eye drops, two drops for each eye, twice a day

Trinsicon/Ferocon, once a day

Paxil30 milligrams, once a day

Neurontin 100 milligrams, once a day

Nizoral (cream), once a day

DitropanlOxybutynin chloride 5milligrams, twice a day

Extra-Strength Tylenol; once a day

(This is taken from David Shenk's book 'The Forgetting')

Possible explanations for S's improvement

So how were the improvements achieved?

1) I realise now that S was probably just as shocked and distressed as I was when she had the awful and sudden decline. She didn't want to be the apparently helpless person that she seemed to be, so she made, and has continued to make, real efforts to respond to my suggestions, requests, and thoughts about what might help.

2) S got her appetite back, but we don't really know why. I had a lot of help from the dietician to whom we were referred. She advised forgetting everything I'd ever learnt about a healthy, balanced diet and to give S loads of calorie rich stuff  -  cream, butter, honey etc. It was hard and I had to keep reminding myself when looking at nutrition information that I wanted the calorie count to be as high as possible. Gradually she started to eat more. Breakfast and lunch were thick sandwiches, I tried to establish a sit-up evening meal  -  with some success  -  and presented all kinds of between meals snacks. My brother and sister-in-law invited us over once a week for a proper meal and the fact that S usually ate 'properly' there, with minimal help, was greatly encouraging. Gradually things began to improve and success bred success, old habits were re-established and I was eventually able to start reducing the cream, butter and calorie-rich snacks. She has now reached what is probably her ideal weight and our diet is gradually returning to normal.

I'd actually lost quite a lot of weight with the stress of the decline. It was quite pleasant to have a period of eating whatever I liked,, when I liked. Now I've got back to where I think I should be so neither of us really needs anything other than a normal healthy diet. We are maybe a little deficient on vegetables as S, despite being a non meat-eater, is not very keen on most vegetables. But we eat a lot of fruit and S drinks apple juice almost exclusively.

3) I've mentioned the benefits of walking previously. I'm still very impressed by the ease with which S manages to walk at a reasonable pace considering how she was back in the autumn. She talks non-stop and the 'conversation' is often more agitated than when she is at home but when she gets home after a walk there is usually a lengthy period of calm.

4) We're attempting to suppress the herpes virus with aciclovir (an anti-viral medication and the only medication she has taken for several months. There are several posts on the possible link between Alzheimer's and herpes so if you haven't read them already, just put 'herpes' into the search box at the top left. I was interested to learn that the manufacturers recommend a dosage for suppression of the virus and that this can be used for months or years. I originally thought it might be difficult to get a continuous supply form the GP, but he was very helpful. I feel that S has become more aware of other people since we started this treatment but it is hard to prove.

5) We were introduced to a wonderful woman whose working life has been spent in care homes. She's now retired and hadn't worked for a few years but for whatever reason decided to work as a carer for people with dementia. We employ her for between 3 and 6 hours a week. It's very good for me, having time for myself to do things I need and/or want to do. Sometimes I stay at home and keep out of the way. I've also met friends for lunch, been for bike rides, and gone shopping in a relatively relaxed way, amongst other things. This wouldn't be nearly so easy if I didn't have someone who so clearly had an immediate rapport with S and who clearly had the skills and personality to deal with any foreseeable difficulties. From what I can see, S is very relaxed in her company and is always calm and happy when I take over again. So we are both benefiting. 

6) Finally, for now, there are the groups and activities that we now attend. The Young Onset Centre proved a real let-down but eventually the admiral nurse and the occupational therapist between them pointed us in the direction of singing, social and music therapy groups. These are all quite challenging for S -  she is usually the most challenged participant by far  -  but, because she is essentially a very sociable person, she certainly appreciates that side of the activities. And other people are generally able to see past the unusual behaviour and appreciate her real personality. She has never shown the slightest reluctance to go to these groups, despite the fact that our schedule is somewhat more hectic now. 

P.S. One of the most important factors has been the help and support of S's daughters. One of them is 3 or 4 hours away and now has two young children but she is as supportive as possible. The other one, who lives locally, sees S several times a week and has a wonderfully relaxed attitude to what must at times be quite distressing behaviour from S. It's made an enormous difference to me to have someone who now knows more about S's problems and strengths than anyone else apart from me. I don't know what I would have done if she hadn't risen to the challenge so magnificently. I can talk to her about S from our shared experience and we have learned from each other. Other family members, from both sides, have done all that they can, as have many friends.

The fatalism of the experts

There is no such thing as remission in Alzheimer's, or so we are told. I saw a web Q & A with David Shenk, author of 'The Forgetting', a fascinating 'history' of the disease, and he said this in so many words. And you can find several other eminent professionals on the web saying the same thing.

Yet reading Shenk's own book I came across Morris Friedell. Shenk was obviously impressed with his abilities, in 1999, and it appears from his web presence that he is still going strong  -  and is in touch with other people who also seem to be holding the disease at bay. This is inspiring.

What increasingly depresses me about the experts (and actually Shenk is essentially a journalist so may have some excuse) is their fatalism about the disease. I think it must arise from the fact that this is so predominantly a disease of old age. Maybe there's an unspoken assumption that as they're soon going to die anyway, it doesn't really make a lot of difference that there's no remission, no cure  -  and precious little effective treatment. Whatever the reason, it would be good to see more attention paid to people like Friedell and what the experts who haven't experienced the disease themselves might learn from some brave spirits who have. We rightly admire and laud people who 'struggle' with terminal cancer, but people with dementia are seldom if ever talked about in the same way, even though many of them may really be doing themselves a great deal of good by refusing to accept that their fate is sealed.