Tuesday, 30 December 2014

A Christmas hitch

The family party we hosted on Christmas Eve (to celebrate our 10th wedding anniversary and the fact that S had reached 65 and I had my 70th during the year) went pretty well. Then we spent quality time with S's family (4 generations including her 3 mostly wonderful grandchildren) on Christmas day.

On Boxing Day, they were due to come and collect S to take her across to an old family friend who was having a party and I would have had time to myself to finish clearing up after the party, amongst other things. Then it turned out that S's 2 year-old granddaughter had chicken pox! After thinking it through and trying to check the facts, it seemed foolhardy to risk any further contact with the child whilst she was infectious. Dementia is hard enough without the added complication of shingles.  One consolation was that when I told S there was no indication that it bothered her.

She had of course been in contact during the previous two days so the decision to keep her at home and forego the time to myself was not entirely logical. Even worse, one of my online friends referred me to the NHS website where there is a categorical statement: 'It is not possible to catch shingles from someone else with the condition, or from someone with chickenpox.'  (Apparently the reason why the Herpes Zoster virus sometimes becomes re-activated and causes shingles is unknown.)

So the only risk would have been catching chicken pox again (S had had it as a child) and this is pretty unusual.

Anyway, we were able to enjoy the youngest granddaughter's birthday party on the 27th.  

It's certainly encouraging that several members of the family commented on S's increased awareness, from time to time, of what is going on around her and I believe this is probably due to the medication (Co-careldopa) that she has been prescribed for the Parkinson's symptoms.

Sunday, 14 December 2014

Donating your brain

Whether they believe in life after death or not, most people do not think of the body as having much use to anyone after death, which is why it is usually burnt or buried.

For many years now the principle of removing organs for donation where appropriate has been generally accepted and, in many cases, this can lead to other people's lives being saved.

You cannot, yet, donate your brain for potential transplant  -  and it is not hard to understand the problems, beyond the technical, that would be involved with that.

But you can still donate your brain, and your gift might help in the understanding of brain disease which could, eventually lead to potential treatments and cures. Neither you nor your relatives can use your brain after you and it are dead so that it could be put to use in this way is surely worth thinking about.

I hadn't thought about it at all until dementia came into my life.  I still don't think about it much but I'm starting to consider donating my own brain.  Even if it is not affected by dementia  -  and 20% of people in their late 80s will develop dementia  -  it could still be of use to researchers.

You can find out more here:


There's even a Brains for Dementia Research Centre.

Saturday, 13 December 2014

A visit to the dentist

For several years now I've taken S to see my excellent dentist (I've been going to him for over 25 years). She lost faith in the one she'd had for a while.

My dentist has always been brilliant and we had no problems until last year. Then S kept closing her mouth. She has a small mouth and had never liked having it 'open wide' for long but last year the dentist couldn't see very much at all. She wasn't refusing to open her mouth and was perfectly calm. I should probably have suggested that he could be more assertive but we left it there and he hardly charged her for what was hardly a check-up.

During the year since, I've thought about it a bit. When she had settled down on the chair I asked if he would mind my holding her mouth open. He had no objection but warned me that I might get bitten. He was able to do a bit like this - more than last year - but I did have the teeth clamping down on my nails a few times. I asked if he could try the clamps that they use and he found the smallest size and inserted it sideways. S was O.K. with this and he was able to see a bit more round the back. He said they looked pretty good and that I'd done well in my cleaning of them.


I dread to think what it would be like if she had to have treatment.

Tuesday, 9 December 2014

Disability Living Centres

These centres, run by a charity, enable people with physical disabilities and their carers to discuss the aids and adaptations that are available.  It's also possible to try out any of them that look as though they might be useful.  You can make an appointment with an Occupational therapist who will talk you through their features, uses, advantages and disadvantages.

Of course, you then have to buy them yourself (unless you are fortunate enough to have them provided by your Local Authority) but it is very useful to get free objective and professional advice prior to buying.

Wednesday, 3 December 2014

Finding the positives, even in small things

I try to look for positives in our situation. I sometimes see them and then forget. So I'm trying to keep a bit of a record. I'm jotting them down in a notebook.

I'm not talking major events of course and some of them are only noteworthy because I used to take them for granted and they haven't happened for a while. But in the last week:

I've twice seen S mouthing the words to songs, one of which we were singing at one of our groups ('It's a long way to Tipperary') and one I had on in the the car and was singing along to myself ('Da Doo Ron Ron').

Twice she's picked up a piece of apple that I'd put in front of her and started to eat. For ages I've been handing her pieces of fruit on the assumption that that was the only way they would get to her mouth.

I was helping her up from the settee, holding her hand and saying 'Push up', when she said, as she did it, 'If I can...' (it was a bit of a joke  -  she knew she could).  This after God knows how long when I think I've only heard yes or no.

It would be very easy to list the negatives of course.  This is, for everyone, a disease that, over time, is only heading one way.  But it's good to remember that these positive things still happen.

Sunday, 30 November 2014

A treatable disease that can be mistaken for Alzheimer's

I came across this online.  There's a condition called  Normal Pressure Hydrocephalus (NPH) that causes, amongst other things, dementia that can be mistaken for Alzheimer's Disease:


In some cases the disease is treatable.  Sometimes patients can make an almost complete recovery.

Everyone interested in dementia should be aware of this disease as it is one of the few conditions involving dementia for which there is, sometimes, a 'cure'.  If someone with NPH is diagnosed as having AD, the consequence could be that they miss out on the possibility of successful treatment.

Wednesday, 19 November 2014

HSV1 and Alzheimer's Disease again

Yet more about the link between the herpes simplex virus (HSV1) and Alzheimer's can be found by following this link:

From the Alzheimer's Society Dementia Catalogue

The AS Dementia Catalogue, which I've only just discovered, looks like a very useful resource generally for anyone interested in dementia.

For new readers, these posts also deal with the herpes virus and Alzheimer's/dementia:











Tuesday, 11 November 2014

An interesting article about ageism....

..which might offer one explanation as to why research into dementia, which primarily affects and kills older people, is so shockingly underfunded as compared with research into cancer, for example:

Article in The Lancet

Friday, 31 October 2014

A best-seller first novel that accurately portrays AD

I've just finished reading 'We Are Not Ourselves' by Matthew Thomas. It's one of the best books I've read for a long time.

One of the main characters develops Alzheimer's  -  a bit of a spoiler, I know, but that's the reason I'm recommending it here.

I found it absolutely authentic in its portrayal of the disease and its effects on the lives of others. I don't know of any other novels that have done this but I expect there are some.

I didn't know about the focus on Alzheimer's when I started the novel and wouldn't necessarily have chosen to read such a novel if I had known but I'm so glad I did.

Wednesday, 29 October 2014

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:


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.

Thursday, 23 October 2014

Paying GPs £55 for diagnosing dementia

Readers in other countries may not be aware of a news story that is currently causing some controversy in the UK,  There is a proposal that GPs should be paid £55 for every case of dementia they diagnose (as I understand it, the money would go to the practice rather than to the GP personally).

Amongst the points that have been raised:

* Why should anyone be paid more for simply doing their job which diagnosis is part of?

* In reality when GPs suspect that a patient may have dementia they will normally refer them to a memory clinic/service for tests and scans and, hopefully, a confident diagnosis.

* There is anecdotal evidence that some GPs fail to spot the signs of dementia, particularly in younger people and, certainly, it would be unwise to assume that a GP can make an accurate diagnosis of the condition.  I've read of two cases recently where people have been wrongly diagnosed as having dementia.  In one case, a woman sold her house to pay for care and spent over a year in a care home before the error was discovered.

* A distinction needs to be made between a diagnosis of the condition we call dementia and a diagnosis of one or more of the diseases that cause the condition. If it's clear that the diagnosis of dementia is not always easy, diagnosis of the disease(s) can be very difficult. It is true to say that a definite diagnosis can only be made post mortem  -  if then.

* Is it wise to rush to diagnose people with a condition for which there is no cure and for which the only treatments are, for many people, inadequate or worse?
I've discussed this in earlier posts which you can find by using the search box (top left).

* Many people living with dementia, and their carers, feel that adequate support post-diagnosis should be the number one priority.  There's also a fear that a rapid increase in the number of diagnoses made will simply put more pressure on support services which are, in many cases, already falling apart or non-existent.

Thursday, 16 October 2014

Fast diagnosis - a bit of a reality check.

I've written before about various aspect of diagnosis (try search  -  left top corner  -  if you are interested).

This story is a little worrying:


The story is a useful reminder that the diagnosis of dementia, and more particularly the diagnosis of a specific disease, is not always as straightforward as the current demand for fast-track diagnosis would suggest. As the quoted dementia specialist says, it's a bit of a reality check.

Saturday, 4 October 2014

A study on the association between infectious burden and Alzheimer's disease.

The following link will take you to a summary of this study:


The conclusion of the study is that 'IB* consisting of CMV, HSV-1, B. burgdorferi, C. pneumoniae and H. pylori is associated with AD. This study supports the role of infection/inflammation in the etiopathogenesis of AD.'

*IB: 'Infectious Burden' (the burden of previous infections by the viruses and bacteria mentioned)

This particularly interests me because my wife's dementia followed a long period, maybe 15 years, when she more or less constantly suffered from debilitating infections (I know that she tested positive for, amongst many viruses, CMV and HIV-1 and B. burgdorferi  -  which she has never been tested for  -  causes Lyme Disease which may be relevant in S's case see this).  I suspect others will be interested for similar reasons. 

I've previously seen it suggested that repeated infections might lay the groundwork, so to speak, for Alzheimer's but, for us, this conclusion takes things to a new level and might put a number of jigsaw pieces together  -  for what that's worth at this stage.

Monday, 29 September 2014

HSV-1 and Alzheimer's disease: more than a hypothesis.

A recent article with this title (also discovered on Alzforum) is summarised here.

Revisiting the link between the Herpes Simplex virus (HSV-1) and Alzheimer's Disease

Regular readers will know that I am very interested in this link.  New readers can find several past posts about the link by putting HSV-1 or herpes into the search box (top left).

I get the weekly newsletter from the excellent Alzforum Network.  For some reason, I searched their database today and found that Professor Ruth Itzhaki, who has done so much to research and publicise the link has very recently published a paper which updates the information that I posted here.

A summary of the new paper can be found here.

There are also some other papers that look interesting.

I never claim to understand all these papers but I think it's still possible to get the gist of them. If you've not come across the discovery of this link you may well be surprised that it is not better known.

Sunday, 28 September 2014

Alzheimer's and Parkinson's - an update

The appointment was useful. I was impressed by the specialist. Prior to meeting us he did the usual speed-read of 'the notes' of course (just the notes since the diagnosis when my S was transferred to the care of the Adult Mental Health Team). He started by saying that the AMHT guy we see had noted that my wife has Lewy Bodies Disease (she hasn't - the diagnosis is Alzheimer's). When I queried this he said he thought it best to forget about labels - a man after my own heart.  (But I'll query this with the AMHT.)

He quickly identified that, as suspected, my wife has several Parkinsonism symptoms e.g. rigidity, 'cogwheel' unbending of arms. He thought on balance it was worth trying a very low dose (initially one 12.5/50mg tab a day) of Co-careldopa. I'd told him about my wife's extreme sensitivity towards many drugs. He said that because of the low dose and the short half-life of the drug (2-4 hours) any serious problem would be very unlikely but, obviously, we should stop taking it if there were any problems.

This dose may not produce any improvement but will show if the drug is tolerated and then the dose could be upped later. Someone once told me 'start low and start slow' is a good policy for most drugs you've not taken before.

So, I started today when nothing else is planned.  We have had a short walk so far, about 3/8ths mile.  It was about as good as it gets at the moment  -  we didn't have to stop at all. No adverse effects are apparent.

We will also get a visit from the 'falls team' who might be able to suggest some exercises that could help.

The specialist also mentioned that a Datscan (relatively new) could confirm whether S has some kind of Parkinsonian syndrome but agreed that this would be something of an ordeal for someone with S's problems and that as he could already see the problems she has we could just get on and try to treat them.

Thursday, 25 September 2014

Alzheimer's and Parkinson's

Throughout the 11 or 12 years it took to arrive at a diagnosis of my wife's condition, all sorts of possibilities were examined. Among the diseases mentioned were Lewy Bodies and Parkinson's although they, like all the others that had been mentioned, were finally ruled out and we were left with the diagnosis of last resort - Alzheimer's

The tilt which my wife sometimes has - it can be to the left, the right, backwards and sometimes all of these alternating every few days with 'normal' - was observed by the GP after a fall and he thought that this and some of her hand movements might indicate that she now also had Parkinson's or some Parkinson's-like symptoms (though he didn't exactly share this thought at the time). Anyway, we've ended up with an appointment tomorrow with a doctor who specialises in Parkinson's and apparently has a very good reputation.

The little ray of hope, I suppose, is that whereas the handful of dementia drugs are useless or worse for many people (including my wife) it seems that drugs used in the case of Parkinson's are capable of alleviating some of the physical symptoms quite significantly.

I will try and report any progress here as I'm pretty sure that this will be of interest to some readers.

Sunday, 7 September 2014

Two myths about dementia

Two ubiquitous myths about dementia are that, once diagnosed, you can't vote and you can't drive.

These Alzheimer's Society Factsheets explain:



(These factsheets discuss the situation in the UK)

Tuesday, 19 August 2014

Mental or physical?

'If problems in living are due to some brain disorder, then this a physical illness, not a mental illness.'

This is a quote from a letter in today's 'Guardian'.  It's hard to disagree with.

Of course, there are some conditions where it's not clear whether there's a physical cause but most dementia has an obvious physical cause, indeed the discovery of physical signs on a brain scan are now often used to establish a diagnosis.  We know that some people with dementia object strongly to having to attend mental health clinics.  Of course, mental health should not be stigmatised but also people's deeply-held views  -  prejudices even  -  need to be acknowledged.

The statement above should give food for thought to those who unthinkingly categorise all dementia as mental illness.

Thursday, 14 August 2014

Herpes and AD - yet again

I've come across yet another article about the link between HSV1 (the 'cold sore virus) and Alzheimer's disease:


It's more recent than some of the other research I've seen and posted about.  And the researchers seems pretty 'upfront' about the link.

For new readers, if you wish to see several past posts on this important topic, you can do so simply by putting the word 'herpes' into the search box (top left).

For the avoidance of doubt, nobody anywhere is suggesting that all Alzheimer's disease is caused by the herpes virus.

Saturday, 9 August 2014

Disturbing yet moving self-portraits

The linked article is pretty self-explanatory (pity about all the garbage on the page):


It's interesting that he was able to paint such expressive self-portraits even when the dementia was quite advanced.

Monday, 4 August 2014

They should make trackers for people

This is what someone wrote on an online forum after discussing the problem of trying to keep track of someone living with dementia who is still mobile.

They do, of course.  Google it if you are interested.

I know that cold fear when you look around and the person you're caring for is no longer there.  Now that S is more settled and doesn't move as fast it is hardly a problem.  But I still have to pack supermarket stuff with one hand  -  the other is holding onto S!  And if I let go she will sometimes set off to who knows where.

Increasingly I answer yes to 'Would you like help with your packing?'.

Monday, 28 July 2014

Falling out of bed

S fell out of bed the night before last at 3 a.m. This has happened once before, probably a year ago, and I had moved furniture to make it more difficult.

It was very scary.  All kinds of things went through my mind.  I was pretty sure she hadn't done any damage.  She walked to the bathroom O.K. after I had got her up on her feet.  I didn't want to put her back into bed until I'd had a chance to work out a foolproof system for averting a fall so I made a bed of folding duvets on the floor. 

Pretty quickly she appeared to be sleeping peacefully and occasionally snoring.

But I didn't think I should sleep in case she'd done some damage that wasn't obvious.

After getting some reassurance from members of the Alzheimer's Society Talking Point forum (yes, at 4a.m.!) I decided it probably was O.K. to sleep.

Next day I let her sleep a bit later and once awake she appeared 'normal'.

But it could have had a very different outcome.

I'm determined it won't happen again.  I've moved a chest of drawers so that the back of it, lengthways, is right up against the bed.  I'm sure this will work but I'm aware that there are various aids available to ensure safety in these situations and I'm going to try and speak to an Occupational therapist about them.

Thursday, 24 July 2014

The passport photo

A couple of days ago, I realised that S's passport had expired.  I could not believe it was 10 years ago that we got the last one.  It was a bit scary as, for the benefit of non-UK readers, our passport service has been extremely inefficient recently (probably because the Government cut their budget for staffing).  We are due to go off on a foreign trip in our small motorhome in five weeks.  Normally passports are issued within three weeks of an application but, to be reasonably confident that we would get her passport back in time for the holiday, there was a bit of  a panic  -  which S was spared (one of the small compensations of living with dementia is that these crises seldom register).

I was able to complete and sign the application form on her behalf but there was the small problem of the new photo.  Clearly a photo-booth would not work.  In a booth on her own there would be little chance that a usable photo would be produced.  We settled for a small photo shop not far from the house.  Fortunately, my stepdaughter accompanied us, though she did have to cope with her own 6 month-old daughter, just to complicate the situation.

The shop was very small and there was a queue.  We waited quite a while.  Then as we were starting to try and get the photo done, more people came in.  The female photographer was very nice and patient.  Both S's daughter and I were trying to get her to open her eyes.  S was in no way intentionally unco-operative. It was just that for some reason she would not open her eyes.  I've mentioned before, I think, that much of the time her eyes are closed or half-closed. Usually, she will open them when asked.  Anyway, it looked pretty hopeless and she also nodded her head up and down from time to time which certainly didn't help.  Eventually, the photographer said she would deal with some of the customers (who were showing signs of impatience) and try again.

The second attempt was just as difficult but then somehow the photographer caught her with her eyes open.  She looked at the picture before printing it out, made a few adjustments and said that it would be acceptable.  Whew......

I wonder what people who can't get a good photo, for whatever reason (e.g. a tremor) do?

Anyway I took the photos and the form into the Post Office where they do a 'check and send' service, for a small fee.  The clerk accepted it all and sent it off.

Now we wait.

Tuesday, 15 July 2014

If anyone out there needs dementia help

It occurs to me that it might be useful to post links to two extremely valuable sources of help and support which I may have mentioned before. These particular links will be of use to English readers only.

Admiral Nurses are mental health nurses specialising in dementia. Admiral Nurses work with family carers and people with dementia, in the community and other settings. Read more here:


Towards the bottom of the page there's a link to a direct phoneline number in case you don't have Admiral Nurses based near you.

The Alzheimer's Society can also be very helpful.  This link will help you find your nearest branch:


Sunday, 13 July 2014

Alzheimer's 'breakthroughs'

These come along pretty regularly and are announced, and re-announced, with great fanfares.

The BBC have run with three of them, as main news headlines, in about a week. First there was the 'new' blood test (which has certainly been mentioned before). Here's an interesting take on it:


This morning the main headline on the Breakfast Programme mentioned two tests, one which would involves cells from the eyelids and one that would test sense of smell.  There doesn't seem to be a current online link but a Google search suggests that both have been mentioned by the BBC before.

Of course, the 'small print' always tells you that the tests won't be ready for general use for years, if at all.

And it's sadly also the case that there is no cure for Alzheimer's  -  existing treatments, at best, help with some symptoms but cannot slow down the progression of the disease.  Between 2002 and 2012 99.6% of trials of drugs aimed at preventing, curing or improving the symptoms of Alzheimer's failed or were discontinued. (BBC website article)

So these really aren't breakthroughs in any meaningful sense.  Unless you regard thousands of people knowing they are destined to develop a terminal disease as a breakthrough.

Friday, 4 July 2014

A deeply moving story

This dementia related story is becoming an online sensation and many people in the UK and beyond will be aware of it, but I didn't want anyone to miss it so here it is:


I don't think any further comment from me is necessary but please feel free to comment yourself if you wish.

Tuesday, 1 July 2014

Comments on Cameron's latest speech about dementia

As promised, some thoughts about the various points he made:

'The prime minister was speaking to an audience of 300 experts who have pledged to find a cure by 2025.'

Here again we find the all too common confusion.  Have the experts really pledged to find a cure for dementia (i.e. all forms of dementia) by 2015? This seems very unlikely since, as we have mentioned several times on the blog, dementia can be caused by a wide range of different diseases and conditions.

'He said there was a need to develop more drugs and get them to patients more quickly. For that to happen, international collaboration and more money for dementia research was needed, he said.'

It's impossible to argue, though one has to say that unless the 'new drugs' are a lot more effective than current ones they won't get us close to any 'cures'.

''He added: "Something like £50m a year is being spent on dementia research, rather than the £590m spent on cancer. It is important to see dementia as a disease and one that we need to better understand so that we can tackle it." '

Again, dementia is called a disease  -  you'd think someone would tell him, wouldn't you?  But there's no denying that much more money needs to be spent on research.  And there needs to be a broader approach so that it's possible for researchers to obtain funding for work on neglected approaches rather than chipping away at the same coal-face as every other researcher.

' "So much of this is about making sure hospitals and care homes treat people with dementia better and, absolutely crucially, that we build dementia-friendly communities where all of us try and understand better what it's like to live with dementia," he said.'

Amen to this.  But, although there is a long, long way to go, my experience is that almost wherever you go there's a growing number of people who have some understanding of dementia.

Saturday, 28 June 2014

Some interesting ideas from Oxford

My daughter-in-law in law spotted this article and very kindly sent it to me:


Most of the interesting article is about how Oxford University is trying to co-ordinate its research into dementia and bring together different disciplines with an interest in dementia:

Approaches to dementia, Mackay explains, have hitherto been fragmented between the different disciplines of gerontology, neurology and psychiatry — the latter two branches of cognitive science having diverged more markedly in the UK than in other countries. OxDARE aims to enable a more holistic approach, with the emphasis on translational neuroscience. This process of ‘translation’ involves bridging the gap between research laboratories and clinical settings, bringing science ‘from bench to bedside’ as Mackay puts it. 

This looks like a promising approach.

Another thought-provoking extract:

While dementia is chiefly associated with memory loss, it can involve cognitive impairment of all sorts, and ultimately describes a set of symptoms rather than a single disease. Psychologists are still debating whether there is a difference in kind rather than degree between dementia and regular old-age memory loss, which comes to us all. Since the physical differences in the brain that define Alzheimer’s or Parkinson’s disease are currently visible only upon autopsy, much research is being devoted to finding ‘markers’, from brain scans or blood tests, which will bring forward the point of diagnosis.

For now, there remains an uncomfortable, but ultimately humanising, sense that we are all subject to those small but significant memory lapses – magnified in the endearing stereotype of the scatty Professor – that place us somewhere on the same continuum as those who suffer from conditions such as Alzheimer’s. We owe it to those who are further down that line to name and face the reality of dementia, and give the research endeavour our fullest support. 

One cannot help agreeing with the conclusion.

Friday, 20 June 2014

Cameron's latest speech about dementia

A previous post (which has by far the most page views on AWD) discussed the Prime Minister's useful acknowledgement that Alzheimer's is a disease:


Now, over a year later, he has addressed the subject again:


I want to deal with this in more detail when I have the time so I'll just point out that he unhelpfully calls dementia a disease (which it isn't  -  see: http://adventureswithdementia.blogspot.co.uk/2014/06/alzheimers-or-dementia.html)

The comments underneath the article are the usual mixture of the insightful, the ill-informed and complete tosh.

Thursday, 12 June 2014

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.

A sad and disturbing story - An update

Here's the original story:


For our readers abroad and for anyone else who may have missed it, here is the latest:


There are as, always in these cases, many questions left unanswered.  Why did it take three months to reach this conclusion?  Why was he arrested and kept without food and water for seven hours?  Why was he not questioned until late at night? Etc.

I will be watching for any further developments or statements, perhaps in three months.  But I won't be holding my breath.  He is, after all, just a poor and powerless old man of 83.

Thursday, 5 June 2014

A pleasure to post this

So often, I read or hear about negative attitudes to people with dementia. Follow this link to see a short video which gives the other side of the story:

Heartwarming Video

There was also, incidentally, a recent online discussion which showed the UK police in a very favourable light in terms of their dementia awareness and willingness to help (this at a time when the UK police are under a lot of pressure because of their failings in other areas).

Friday, 23 May 2014

Maybe some people are worrying unnecessarily about their chances of developing dementia

I was quite shocked to find that a friend's mum and dad (both in their eighties) shared the assumption that her daughters (in their thirties) were bound to develop dementia.  This was based on the fact that both the friend and her mother developed dementia but ignored the fact that each of them had an entirely different kind of dementia.

I mentioned this to my step-daughter.  As S's mum had vascular dementia, we had discussed it before and I had found reliable information online suggesting that the number of people who will almost certainly develop dementia as a result of their genes is fairly small.  After our latest conversation she sent me a PDF document from Alzheimer's Research UK entitled 'Genes and Dementia' which I feel is pretty reassuring.

You can see the document by following this link:

Thursday, 22 May 2014

Some people with dementia do just fade away peacefully

In this dementia awareness week, I feel it's important to try to make sure that people have a balanced view about the effects of dementia.  I spend a lot of time reading heart-rending accounts of the real suffering of people with dementia and their carers and the final part of the dementia journey is often a dreadful experience for them.

Without denying their experience, I want to share a little information about my mum's journey to show that some people with dementia do remain contented in the 'end of life' stage and die peacefully.

This photo was taken just after my mum's 90th birthday:

She died 3 months later (AD on the death certificate). At that point she had been bed-ridden for getting on for 2 years. We saw her a few days before she died.  She was still smiling.  Her later years were spent in a Methodist Home for the Aged. Although they didn't normally look after people with advanced dementia, they were happy for her to see out her days in their care because she had contributed so much, always helping new residents to settle in, for example. They looked after her very well. She died peacefully.

She was, comparatively, lucky. So were we.

Tuesday, 20 May 2014

Dementia awareness (part 2}

* Hurrying and dementia don't go together well  -  aural and visual impairment may complicate things

When talking to a person living with dementia, it's a good idea to talk slowly and as clearly as possible.  Depending on the progress of the disease, people may first of all have difficulty hearing what you say and may then take longer than you might expect to process what they have heard.

Similarly, every day tasks will often be carried out very, very slowly.  It is very easy, to become impatient.  And totally counter-productive.

As well as hearing problems, people living with dementia may also experience visual impairment and/or they may, like my wife, have their eyes closed a lot of the time.  I often have to suggest that S opens her eyes when climbing the stairs or getting into a car, for example.  It helps!  As do the same little prompts each time.

* It's not inevitable that people living with dementia will end up in a care home but it's not always possible for them to be cared for at home

Carers often appear divided about this.  Some are determined to see the role through to the end, others assume that there will come a point when they will not be able to cope.

In reality, while most people living with dementia end their days in a care home or in hospital, others do stay at home.

It is foolish for anyone to express certainty about their ability to cope right through to the end as no-one can predict how the condition will progress in any individual. Sometimes carers find their own health breaks down, perhaps as a direct result of the stress the role brings, and the decision is taken out of their hands.

* Most carers continue to care for a person even after they have moved to a care home

Many carers visit very regularly and try to make sure that everything possible is being done to make the person they care for contented.

Relatives often worry that the person living with dementia will forget who they are.  This is not inevitable, and the more often you visit the less likely it is.

Monday, 19 May 2014

Dementia awareness (part 1)

As promised, here are some of the things about dementia which everyone who wants to be 'dementia aware' needs to bear in mind.

* Everybody who has dementia really is different from everyone else who has dementia.

 Yes! Really.  As more and more people are being given a diagnosis of 'mixed dementia' ('a little bit if this and some of that') and as more and more different types of dementia are being named it may be time to accept that there are as many kinds of dementia as there are people living with dementia.

As the wise saying has it: 'When you've seen one person with dementia, you've seen one person with dementia.'

* It's not just about memory

The public at large, and the media, appear to believe that dementia is all, or mostly, about losing your memory.  It is, in part, but the difficulties involved in living with dementia go far beyond being unable to remember who the prime minister is, for example.  You can live quite happily without being able to recall stuff like that.  As Iris Murdoch is quoted as saying, in response to that question:  'I don't know.  Does it matter?'

Of course, when someone loses the ability to write and, usually later, to read, you can call that 'forgetting' if you want to, but that doesn't do justice to the devastating loss of these abilities.

And when someone loses the ability to swallow and therefore dies, which is how most people with dementia die, to say that they have forgotten how to swallow is akin to saying that someone who dies from lung disease has forgotten how to breathe.

Worse still, for so many carers, are the personality changes which occur in most, though not all, people who have dementia.  Sometimes, it is true, people change for the better, and a person who has been cantankerous all their life softens and may even become appreciative of the help they are being given.  But more often, it seems, there is a change for the worse.  People who have always been warm and gentle human beings can become verbally and physically aggressive towards those they previously loved and harangue or attack them night and day.  Imagine that.

Even people who retain some of the qualities that made them so loveable tend to lose the ability to empathise so that when they are told bad news about someone who used to be close to them, they might make an appropriate verbal response but give no indication of being upset.  I suppose they've 'forgotten how to feel'!

* A person with dementia is not a child

Though there are obvious similarities between the behaviour of someone with advanced dementia and the behaviour of an infant, it is very important to remember that the person living with dementia is not a child, but a person who has decades of experience and memories even though these may no longer be accessible in ways that we can recognise.  This post contains a quote which explains why this is so important:


* The best way to relate to a person with dementia is to try to to relate to them as a person

Try talking to them.  You may be able to have a perfectly normal conversation with them.  They may take a long time to reply.  They may not reply at all.  You'll soon get some idea of what they are capable of.  And, as you get to know them, they will probably still surprise you.

Wednesday, 14 May 2014

Dementia Awareness Week

Dementia Awareness week in England runs from 18th to the 24th May.  This link to the Alzheimer's Society website gives more information:


In each area there will be different activities and events taking place.  Anything that raises awareness about dementia must be a good thing.

Even since we started on our dementia journey I have found that more and more people have some understanding of the disease.

In my next post I'm going to try to identify things that I think people need to know and understand about dementia.

Monday, 5 May 2014

An invitation from a TV documentary company

Twofour Broadcast, the production company behind Educating Yorkshire (www.twofour.co.uk/broadcast  ) are making a three-part documentary series for Channel 4 all about dementia. The series  aims to document the lives of people with dementia and their families whilst  raising awareness about the latest progressive techniques being used to help those  living with the disease.  We want the series to send out a positive message about dementia, and to show that there are ways to cope and live better with the illness for the sufferer and the carer.

Each episode will look at a number of  families  who are caring for a relative with dementia at home who have reached a certain crisis point and are starting to access outside help, or/and consider other techniques that can help their situation . The idea is to follow a family through this difficult process whilst they meet different groups and organisations,  who are using the latest and most up-to-date progressive techniques in dementia care and therapies.

We hope to show that the work they do will help give the carer a better understanding of their relative’s particular type of dementia and empower them to take steps to care for and communicate with their relative in a new way. Within the programme,  would like to illustrate the life the relative has led and aim to work together with the family  to find out about their past through life story work, music therapy  and reminiscence work. In some cases, by bringing particular care approaches into their lives,  we hope to witness the person with dementia re-engage with an interest or activity they may have enjoyed in the past.

We are looking for families who make like to share their stories and take part in the series. We sincerely understand how sensitive the area of  dementia is but we hope the series will send an important message out generally, and help eliminate some of the stigma associated with the illness.

I have been contacted by : Ceri.Hubbard@twofour.co.uk.

She has explained to me the kind of programmes they are aiming to produce and sent me the above summary.  If anyone is interested in talking to her and/or taking part in the programmes, she would welcome a discussion.

As a retired education professional, I was very impressed when she told me that this is the company behind Educating Essex and Educating Yorkshire, two of the best and most thoughtful programmes about schools that have ever been produced. I know, from hearing interviews with the participants, that great care is taken to ensure that everyone involved is happy with the finished product.

Sunday, 20 April 2014

Anxiety and hypochondria

I have read posts by several carers for people living with dementia which mention that they, the carers, have an ever-present fear of getting dementia.  Usually the simplest common memory lapse will activate this fear.

Sometimes, when they have parents or siblings with dementia they worry about the possible genetic links, but often it's their knowledge of how common dementia is that causes the worry.

I don't have this particular worry  -  despite the fact that my mum had Alzheimer's  -  though I have, and have always had, a degree of hypochondria and, at a few points in my life, I've been convinced that I was dying.  Obviously, I was mistaken (except that we're all dying)!

Now that my life is largely involved with keeping someone I love alive, I worry about my own health in a different way.  I'm concerned not just about my own future, but also the effect any health problem may have on my wife.

Also, of course, as one gets old, and more and more friends and acquaintances fall by the wayside, real health issues, whether serious or trivial, tend to increase.

It all comes down to the well-worn cliche about taking each day as it comes.  It's not easy, but it makes sense.

Tuesday, 15 April 2014

A sad and disturbing story

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

Walter tells his story

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

CQC Report

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

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

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

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

Sunday, 6 April 2014

That nasty virus rears its head again

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

Journal of Biological Chemistry

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

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

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

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

Saturday, 5 April 2014

Dementia fact sheets available online

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

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

Thursday, 3 April 2014

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

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

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

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

Here is the link:

I would welcome comments, particularly from any researchers.

Saturday, 22 March 2014

Recovered memory after general anaesthetic

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

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

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

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

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

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

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

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

Sunday, 16 March 2014

Memory Cafe Directory

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


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

Thursday, 13 March 2014

What's in a name?

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

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

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

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

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

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

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

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

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

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

Wednesday, 5 March 2014

A sense of achievement

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

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

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

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

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

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

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

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

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

Sunday, 23 February 2014

Looking Back

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

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

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

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

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

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

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

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

Sunday, 16 February 2014


I've read online about a disturbing way in which multiple drugs are sometimes prescribed for people living with dementia. This is how it goes, based on an actual example. The first drug is prescribed to deal with dementia symptoms. The person then becomes violent. A drug to reduce the violence is prescribed in addition. The person now starts having frightening hallucinations. A third drug is added, an anti-psychotic which causes the person to become zombie-like. Now, if the first drug has clearly not worked in the way it should have done - which is often the case - surely the obvious, sensible, logical thing to do is to stop it. Instead, the situation is complicated and compounded by the addition of another drug which also worsens the situation. And then another drug is added. Which worsens the situation further. I wonder what the record is for the number of drugs prescribed in this kind of sequence?

Monday, 27 January 2014

Suffering from dementia?

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

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


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

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

Thursday, 23 January 2014


This is a word that several people, professionals and others, who know or have observed my wife have used in relation to her general mood.  I have to agree that is usually sums her up.  And I'm very grateful for it and pleased for her.

But of course such a state has come at a price.  When she was tormented and frustrated by hallucinations and by her inability to cope with some of the basic tasks of everyday living, there were still many times when she was able to articulate what she was feeling  -  whether bad or good  -  and relate meaningfully to other people, including me.  It's not that these abilities have disappeared entirely  -  it's still possible to understand what she is feeling from her body language, behaviour, the occasional few words and even by getting the gist of her mixed up 'conversations' where made up words now predominate though there are sometimes perfectly sensible phrases and even sentences (even if you ignore the words, the patterns of the conversations, the intonation and the emphases, can also be revealing).

She has a new granddaughter about a month old.  I think she understands this, and she smiles a lot when we are talking about the baby and when she is holding her.  But then she smiles a lot anyway.

It saddens me enormously that her grandchildren will never really know the person who raised their mothers, and whom I fell in love with.

Sunday, 12 January 2014

Well worth reading

Here's a link to an article by Sally Magnusson about her mum's dementia:


It's beautifully written and very moving.

Friday, 10 January 2014

Couldn't help smiling

S's 'conversations' now contain many more made up words and sounds than they used to.  But you still hear 'proper' word, phrases and sentences mixed in with the made up stuff and, if you ignore the words/sounds (which is difficult) the ebb and flow of 'proper conversation' are very evident.

The other day I 'tuned in' at a point when S had stopped for a bit and was 'listening' to the other person in the conversation.  Then I heard a chuckle and 'I knew you were going to say that!'

I'm sure that, before dementia struck, S would also have found this amusing.

Thursday, 9 January 2014

Back to normal

Regular readers will have seen that I have not posted on the blog since November. This is because, in addition to all the usual Christmas and New Year stuff, I have been rather preoccupied with a health issue of my own.  It has now been resolved, I'm glad to say.  But it has been hard to concentrate on my normal activities.  As you may imagine, dealing with this kind of thing is that much more taxing when someone is dependent on you.

And this experience has brought home to me just how dependent on me S is. A health problem that could mean a stay in hospital is a nightmare for a carer. As there was a realistic possibility that I would need in-patient treatment, I have had to think about what arrangements would be needed in such a case and how these might affect S.  Whichever way I looked at it, it was be very complicated and none of the possible scenarios would have been, it seemed to me, without risk to her present and future well-being.

I am now hoping that I can gradually build on the information I've gathered so that, if I'm in the same situation again, I will at least feel better prepared.

Anyway, normal service has now been resumed.