A national Dementia Atlas

Apologies if this has been posted about already but I couldn't find it if it has.

The atlas can be viewed here:

https://shapeatlas.net/dementia/#6/52.955/-2.153/l-p65


According to the Guardian, this is just the start of an exercise that should give a lot of information about how different areas perform in their approach to dementia:

https://www.theguardian.com/society/2016/aug/16/new-care-atlas-reveals-disparity-in-dementia-care-across-uk

EDIT: The previous link to the Atlas was out-of-date.

A heartwarming story

This story has, understandably, caused quite a stir. An elderly man with dementia who has been singing publicly for many years is still able to sing his songs even though his dementia often means that he is lost for words when he tries to communicate:

http://www.itv.com/news/granada/update/2016-08-05/heartwarming-video-of-dad-and-son-singing-goes-viral/

Fit number 6

This one happened about 5 a.m. so no chance of getting assistance unless I wanted to get the emergency services involved. I managed to stay calm enough to quickly hook Sue up to the oxygen and checked the level straight away  -  99% which was reassuring.

I used the Buccolam 'fit buster' prescribed after 5 minutes. On the previous two occasions I've used it I've waited longer but I've read that fits are more serious the longer they go on. Almost immediately there was a change in her breathing for the better and within a short while there were the usual and reassuring small movements.

She's now sleeping quite peacefully  -  the Buccolam has a sedative effect so this is quite normal. Hope to post again soon.

The essence of the person

Some time ago now, a neighbour was asking after S and I tried to explain that, even though she can hardly speak or do much for herself she is still, demonstrably, S. The neighbour, who has had some experience of dementia said, 'The essence of S is still there!' This summed-up the situation so well that I was overcome with emotion and had to end the conversation.

I realise that we are very lucky in this respect. Some people with dementia turn into a completely different person who may be aggressive and spiteful where they were once friendly and caring, for example. Others may become such a shadow of their former selves that they are barely recognisable even to their loved ones. Some may reach a stage where they do not recognise their loved ones and may become suspicious and wonder why a stranger is in their house.

But S is still very clearly there. She still smiles a lot as she has always done (except for a brief period of about 3 or 4 months when she was tormented and paranoid). She still does her best to be helpful when she is being moved around from commode to bed to wheelchair or 'rolled' from one side to the other whilst being dressed. She still mouths the words to some of her favourites songs when we go to our weekly 'Singing for the Brain' and occasionally actually sings some words softly.

It wasn't so long ago that she clasped a carer's hand after something that had been done for her and said 'Thank you'.

She still understands a good deal of what is said to her, providing she is not too distracted by what is going on in her brain.

Most encouragingly, whenever we help her to stand and take a few paces (with a good deal of support) the determination she shows is unmistakeable.

She was always a quietly determined person  -  it's part of her essence.

The way the media portray dementia

We need a balanced view of dementia from the media. The smiley grey-haired little old lady and her smiley carer should share the billing with the tormented, paranoid, and violently aggressive person.

We need an understanding that, whilst some people suffering with dementia do die a horrible death others pass away peacefully.

We need it made clear whether they are talking about dementia (a condition which can have many causes) or Alzheimer's (which is now an umbrella term for a growing number of diseases).

In fact we need, and the media should help with this too, to put the word 'Alzheimer's' into the dustbin of history where it belongs, as an outdated description of lots of different diseases. Dr Alzheimer discovered a lot about a specific case of a disease affecting a person in middle age and I'm sure he would be amazed to learn that his name is used as to cover so many different diseases and, often, as a synonym for dementia, which is not a disease but a condition caused by many different diseases. No wonder people are confused about things when the name is used so lazily and ignorantly.

Perhaps most importantly, what cannot be overemphasised is that everyone is different and no two people with dementia have the same journey, though there will always be some similarities between them and  a lot of other people and reading about how other people and their carers are dealing with the issues as they arise can be tremendously helpful.

(We are coming to the end of Dementia Awareness Week in the UK and this post was prompted by some of the media coverage.)

NHS double standard for people with dementia in care homes

Thanks are due to the Alzheimer's Society for bringing to light what might well be described as a scandal:

https://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2599&_ga=1.208937239.428393088.1433590610

Whether anything will change as a result of this revelation remains to be seen.

Another fit

When I went to get S into a position so that I could give her her breakfast yesterday morning she winced and clutched the top of the arm that she had probably been sleeping on and then almost immediately went rigid. I got her into the recovery position quickly. She was breathing noisily through her nose. I tried hard to see if her tongue was obstructing her throat but her teeth were clamped tightly together. All S's fits have lasted longer than most I've read about but when it got up to 10 mins I decided it was time to try the Buccolam medication which you squirt inside the cheek. I did this at about 11 or 12 mins. It was easier to squeeze than I thought and all went in on one side with some coming out and there was some choking that quickly subsided.

What I hadn't realised was that it's a sedative - the GP told me this when I phoned after I'd given it - so it was difficult to know initially whether/when the fit had morphed into a pretty deep sleep. She eventually did sleep for a long time. I told him the GP that the oxymeter was showing fluctuations and was mostly in the low nineties which I'd read was a cause for concern but he was happy that it hadn't gone below 90. I'd managed to contact a friend of S's who lives a few streets away and who has given me her number for this purpose. She came round fairly promptly and it was a great help having her there. I phoned the GP again and was reassured that the sleeping was OK - I even got him to listen to her breathing.

Daughter and baby came later and this was also a great help. Things returned to somethings like normal. The only after-effect seemed to be extreme tiredness. She ate and drank and used the commode as normal. We also had a couple of smiles. I think she slept pretty well and had her breakfast as normal so I'm hoping we'll get her to our 'Singing for the Brain' group this afternoon.

But these things are scary when you're on your own.....

Memory retrieval, not storage, hinders mouse models of Alzheimer’s

I found this report on a research project very interesting:

http://www.alzforum.org/news/research-news/memory-retrieval-not-storage-hinders-mouse-models-alzheimers

All the usual caveats apply, of course  -  many years before this knowledge could lead to a treatment, probably doesn't apply to all dementia, etc. But I've always felt that S's most significant problem as the dementia progressed was retrieval of memories rather than storage. I felt many times that the memory was still in there somewhere and occasionally its retrieval could be 'triggered' by an event, what someone else said, a picture, music.....

A very powerful cry from the heart

She's FINE - so we the authorities don't need to do anything but YOU should...
Take the morning/day off to get her to all her medical appointments because otherwise she won't go. Ring them and apologise for her non-attendance and rearrange another appointment, booking yet another day off when she says she doesn't feel like it today.

BUT SHE'S FINE.

Attend said medical appointments and sit slightly behind her in order to nod or shake your head to indicate whether what she's saying has some basis in reality or is a complete and utter nonsense.

BECAUSE THAT'S COMPLETELY NORMAL AND ROUTINE THING TO DO FOR PEOPLE WHO ARE "FINE".

In fact, go everywhere with her now because she's visibly vulnerable when she's out, and a target for the unscrupulous. She's also not really safe on her own out and about any more due to all the falls and her inability to access public transport or cross roads by herself any more.

COS THAT'S NORMAL FOR PEOPLE WHO ARE "FINE".

Nearly get hit by a car yourself when she runs out into the road like a naughty toddler, but unlike a toddler you can't put her on reins.

BUT SHE'S FINE. (YOU"RE A NERVOUS WRECK BUT WHATEVER.)

Do all her shopping because the only thing she can cope with buying anymore is bread and biscuits. Which is lucky because that's pretty much all she eats.

BUT SHE'S FINE.

Supervise her 24/7 because she wanders and has a tendency to turn up places in distress, very frightened and confused.

BUT SHE'S FINE.

Supervise what she's wearing because she tends to wear exactly the same clothes whether it's a heatwave or a snowstorm.

BUT SHE'S FINE.

Remind her to bathe and wash her hair because she doesn't know what day it is, so she doesn't know it's bath day or hairwash day.

BUT SHE'S FINE.

Remind her to use the loo and get out of her chair now and then because otherwise she can sit there in front of the tv for hours and hours and hours and then have an accident.

BUT SHE'S FINE.

Clean up the mess when she has an accident because she "couldn't be bothered to do that now/didn't feel like it/ didn't have time."

BECAUSE THAT"S STANDARD BEHAVIOUR FOR SOMEBODY WHO IS "FINE".

Turn her heating off when it's 26 degrees outside and she's whacked it all the way round to the max "because it didn't come on".

BUT SHE'S FINE.

Go down there to turn her heating on when you ring her to remind her to eat or take her pills and you can hear her shivering.
Also make her put the cardigan on that's sat over the arm of the chair next to her, and press "ON" on the electric fake gas fire that you had fitted because you hoped it would stop her fiddling with the central heating.

SHE'S FINE THOUGH.

Ring her and remind her to eat and take her pills a few times every day.

YOU KNOW, BECAUSE SHE'S FINE.

Go down there immediately every time "the tv won't work" because she can't work the tv all the time and she can't follow instructions over the phone, but it's Ok because it's a two mile walk and the exercise is good for me.

SHE'S PERFECTLY FINE THOUGH.

Realise that you've just got used to most of the downstairs curtains being closed all day every day "because people are looking at her".

SHE'S FINE THOUGH.

Get a Power of Attorney then register it with the bank so that you can pay all her bills for her because otherwise she wouldn't, and everything would get cut off.

BUT SHE'S FINE.

Remove all banking paperwork and her bank card from her home and give her pocket money - because she's been stuffing charity envelopes with hundreds of pounds every month and giving her bank details to people on the phone and strangers on the doorstep.

BUT SHE'S FINE. AND DEFINITELY NOT BEING FINANCIALLY ABUSED BY THESE CHARITIES, CHUGGING COMPANIES AND INTERNET SUPPLIERS/INTERNET SECURITY SALESMAN ETC BECAUSE THEN WE'D HAVE TO DO SOMETHING.

NO. NOT EVEN THE ONE WHO MORTALLY OFFENDED HER BY TELLING HER TO GET HER CARERS TO BUY HER A MAGNIFYING GLASS SO THAT SHE WOULD BE ABLE TO READ OUT HER CARD DETAILS OVER THE PHONE. (CARERS?! HOW VERY DARE YOU! SHE'S FINE.)

Redirect her post to your house so that she no longer receives the charity begging envelopes full of raffle tickets etc because she treats the "suggested donation" part as a bill she has to pay. If it says "Suggested Donation £30" then that's what she sends them.
Except that she doesn't really know which note is which any more so she puts three notes in, but not being sure which ones they are she puts another few in to be on the safe side. And in this way she could draw out £150 from the bank on Monday morning and have none of it left on Wednesday afternoon despite not having left the house except to post a couple of letters.

SHE'S FINE THOUGH. THIS IS JUST SOMETHING YOU HAVE TO DO FOR PEOPLE WHO ARE FINE.

Register the Power of Attorney with the phone company so that you can a) pay the bill and b) so that you can buy her a phone and stop her renting one from the phone company, because she could have bought many many many phones for the amount of money she's paid to rent the same one since 1985, and c) so that they will talk to you because you need to get Caller ID on the line so that you can buy a TruCall machine which will screen her calls - both to protect her from salesman/criminals and because she says "debt collectors" are ringing her to ask questions about her neighbours and she's giving them chapter and verse about who's got a new car, and who stays where overnight, and who she thinks isn't really disabled. You don't know if this is true or not, but you can forsee lots of trouble with the neighbours if she should mention it to them.

SHE'S FINE THOUGH.

Buy a TruCall box and set it up so that only friends and family can ring her.

BECAUSE SHE'S FINE.

Buy her a Buddi telecare system which she refuses to wear, even though she's had several falls. Because she's not going to fall again you see.

SHE'S FINE THOUGH YEAH? TOTALLY.

Be at her house when she gets up in the morning. (Anywhere between 5 am and 9 am.) And again when she decides to go to sleep. (Piece of string) And also if she gets up in the night. Because she can no longer manage cleaning her contact lens regularly and keeps injuring her eye by not putting the neutralising tablet in, taking the contact lens out out too soon, confusing saline solution with cleaning solution or by not cleaning it at all and putting a cracked dirty contact lens into her eye.

OR

Replace her £120 contact lens about every three to four weeks before it cracks, and take her to A&E regularly when she forgets to put the neutralising tablet in or takes the lens out too soon before it has worked.

SHE'S FINE THOUGH. SHE'S NOT ENDANGERING HERSELF AT ALL. NOTHING FOR THE AUTHORITIES TO HELP WITH HERE.

Fill in all forms and do all life admin - because she can't.

SHE'S FINE THOUGH. THIS IS ABSOLUTELY NOT A SIGN THAT SHE NEEDS ANY HELP FROM THE AUTHORITIES.

Guide her step by step through how to sign her name when she needs to - because she can't really write any more, and can't remember what to write either.

SHE'S FINE THOUGH.

Turn down invitations to people's weddings because you can't leave her unattended, don't have a holiday for the last six years or the next 15, realise that the idea of having a social life or even a gym membership is ridiculous and give up your whole life to supervising her.

BECAUSE SHE'S FINE.

Take whatever abuse she wants to throw at you very day cheerfully and compassionately, always validating her reality and negating your own.

YOU NEED TO DO THIS BECAUSE SHE"S FINE.

Fight back tears when an entire bus queue gives you sympathetic looks and pats your hand or shoulder as they get on because of the evil things she's been saying to you at the top of her voice for the last eight minutes while they all queued for the bus.

BECAUSE THAT'S FINE.

Buy her a cup of tea in town and then get back on the bus with her after she refuses to do the shoe shopping you came into town to do because you've upset her by not having the energy to cry and she likes it when she's able to make you cry.

STANDARD. NORMAL. "FINE".

Take anti depressants and sleeping pills just so that you can cope with the stress of dealing with her because her behaviour is so "challenging".

WE WOULDN'T NORMALLY INSIST THAT YOU STAY IN AN ABUSIVE RELATIONSHIP AND DRUG YOURSELF SO THAT YOU CAN COPE, BUT WE WILL ABSOLUTELY EMOTIONALLY BLACKMAIL YOU IF YOU SEEM TO BE SUGGESTING THAT YOUR MENTAL HEALTH MATTERS TOO.

BECAUSE SHE'S FINE.

I came across this online. The person who wrote it has given me permission to post it. They said they are going to edit parts of it as they did it at 5 a.m. and 'it is not very well written'. I beg to differ.

Dementia death

A couple of times I've come across statements online to the effect that deaths from dementia are uniquely horrible. I know some people with dementia do, sadly, die in pain and torment. But many do not. I've written here about my mum's 'dementia death'. I have also read many accounts of the dying moments of people with dementia and some of them clearly just faded away. Indeed, some of them die in their sleep just as some people without dementia do,

People have also stated that what makes the death of a person who has dementia uniquely awful is the way in which loved ones lose the person 'bit by bit'. Of course, this is true in one sense but it's also true that some families find that they can still find and communicate with 'the essence of the person' right up until their death,

It is also true that there are many other truly horrible ways to die. I do not need to spell them out here.

So whilst I understand that the last days or hours of a loved one dying from dementia can sometimes be truly dreadful, I don't see that there is anything to be gained from expecting it to be or claiming that it always is.

50,000 page views

Today the blog has achieved 50,000 page-views since it began. I wanted to express my heartfelt thanks to all readers, wherever you are in the world.

If you have read my recent posts you will be aware of the recent difficulties that have made it impossible for me to post as much as I would like to. Things are beginning to settle down a little and I hope to resume something like 'normal service' very shortly.

And another article worth a look

This is an article about recent research into the supposed link between beta amyloid and Alzheimer's, still the predominant focus in the search for dementia drugs that might actually work.

It seems to me to contain some bizarre explanations as to why the researchers' investigations do not produce exactly the results which they have convinced themselves are inevitable.

This is perhaps the best example, but you will see several others if this interests you enough to try to follow the article:

'previous trials of anti-amyloid drugs on people with dementia failed because their brains were already too damaged or because some patients, not screened for amyloid, may not have had Alzheimer’s.'
So I wonder what disease it was that was wrecking the lives of those patients who had been diagnosed with AD but did not screen for amyloid?

Disempowerment again.

Empowerment-and-disempowerment is the third most read AWD post.

Here's another take on the issue, in a very different situation two and a half years on.

I still believe that it's important to preserve abilities for as long as possible even when it might be easier for us to take over. A current example for me: I've been pre-loading S's spoon and getting her to hold it and feed herself longer than I care to remember. This is incredibly time-consuming and can be very frustrating when she drops the spoon or spins it round so that food drops off. Sometimes towards the end of a meal I feed her the last few spoonfuls and that is a lot easier. But there are now so few things she can do for herself that it seems perverse to stop her doing one of them. It's so easy to disempower someone.

Interestingly, the (very experienced) carer who comes in twice a week always feeds her. As she's generally very good, I put up with this but it makes me even more determined to continue to load the spoon myself when I'm in charge.

Treasure your moments

I came across these words online:

Love will get you through

I say enjoy what time you have left together..... I was diagnosed 2 weeks before christmas gone with vascular im 53, met the love of my life at 51 we have had just 2 sweet years together but no in our hearts we have many more and without having to say a single word to each other we know our love will get us through. Its not all doom and gloom I realise now its not the years that count but the moments. 

We should all try to treasure our moments.

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:

http://www.hta.gov.uk/bodyorganandtissuedonation/howtodonateyourbody/donatingyourbrain.cfm

There's even a Brains for Dementia Research Centre.

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.

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:

http://adventureswithdementia.blogspot.co.uk/2013/01/herpes-alzheimers-and-schizophrenia-yes.html

http://adventureswithdementia.blogspot.co.uk/2012/01/more-about-possible-relationship.html

http://adventureswithdementia.blogspot.co.uk/2014/08/herpes-and-ad-yet-again.html

http://adventureswithdementia.blogspot.co.uk/2013/01/bipolar-also-what-next.html

http://adventureswithdementia.blogspot.co.uk/2012/03/herpes-vaccine-may-help.html

http://adventureswithdementia.blogspot.co.uk/2014/04/that-nasty-virus-rears-its-head-again.html

http://adventureswithdementia.blogspot.co.uk/2012/06/beacons-of-hope.html

http://adventureswithdementia.blogspot.co.uk/2011/10/possible-causescontributory-factors-2.html

http://adventureswithdementia.blogspot.co.uk/2013/02/looks-like-great-resource-for-hsv1-and.html

http://adventureswithdementia.blogspot.co.uk/2013/01/guess-what-type-2-diabetes-now.html

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

Ash Frontman releases solo album about dementia

Please follow this link to learn more:

http://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2229

Telling it like it is

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

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

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