Diagnosis again

I know I've posted about this before but I still have very mixed feelings about the importance of a quick diagnosis. Someone asked online how long a diagnosis would take.

I'm afraid it can be as long as the proverbial piece of string.

Part of the problem is that whilst memory clinics can usually decide whether someone has some sort of dementia, it can take a very long time to identify which condition a person has. Dementia can have many causes. Increasingly, as well, clinicians seem to come up with a 'mixed dementia' diagnosis as if covering their backs.

My wife was referred to a well-regarded memory clinic in 2000. She got the following diagnosis in 2011: Probable Alzheimer's disease (posterior cortical atrophy). Probable !! Since then she has had an additional diagnosis of Parkinsonism.

But during the many years of waiting we got on with life as best we could and created many happy memories. If you think a quick diagnosis will help then it might be a case of being careful what you wish for.

Now I know some people can benefit from some medications and that a diagnosis is usually required before drugs are presribed but I also know, from our experience, and from my reading that this is not always the case. S was tried on a number of  meds before she had a diganosis.

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EDIT: The previous link to the Atlas was out-of-date.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

Genetic test could predict people at higher risk of memory problems

This recent piece of research may be of interest:

https://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2625

Brexit Could Threaten Neurodegenerative Disease Research in Europe

The respected US-based Alzforum (Working for a cure) has some thoughts on the potential effects on research of 'Brexit' (the decision by the UK to leave the European Union):

http://www.alzforum.org/news/community-news/brexit-could-threaten-neurodegenerative-disease-research-europe

Sometimes you get nice surprises

Some months ago, I got out our Yamaha keyboard (quite a sophisticated one left here by my younger son Joe) at our care/PS's suggestion. We wanted to see if S would 'play' it. Early attempts were not promising and we didn't really persevere.

Earlier on this week I started making a list of the various ideas we have tried by way of 'activities' for S, as getting her outside is usually very stimulating for her but recent uncertain weather has made this difficult.

We decided to try the keyboard. It was amazing. She sat in front of it and played around for at least an hour and a half. We helped a bit for the first 5 minutes and then we left her to it. At first she was hitting several notes simultaneously but soon concentrated on single notes, leaving regular pauses. The effect was rather like the kind of musical sounds that might be used for a meditation tape or video. It was quite relaxing. The keyboard has many different voices and we had set one that sounded like this anyway but the pauses she left between the notes she played added to the effect. I should say that she has never learnt to play a piano or any other musical instrument.

I would never have believed that such an activity would have lasted so long. Truly a revelation and we decided to see if this can become a regular activity. She has had another session two days later. Her daughter and an old family friend were equally amazed.

It's very easy, when so many attempts to engage a person have proved fruitless, to stop trying. This is a reminder that we should never do that.

What kind of fits?

I haven't blogged much recently. I seem to be spending more time checking up on S when I'm alone here and she is resting or sleeping. When the PAs are here, I still spend a lot of time with S.

I'm still very concerned about the 'seizures/fits', particularly their length and apparently increasing frequency. This morning I've found this very interesting website which seems to describe every known type of seizure:

http://www.epilepsy.com/learn/types-seizures

What happens to S doesn't come close to matching any of the detailed descriptions on this site. Also, I haven't searched exhaustively but all the duration times mentioned are much less than the 10-12 minutes which S's events seem to have lasted, though as the event seems to gradually morph into very deep sleep it's difficult to be sure. It's all very perplexing.

Another thing I've picked up from the site is the possibility that Omega 3/oily fish may help reduce the number and duration of seizures. This may be worth trying even bearing in mind the possibility that these are not epileptic seizures

Anniversary of the first fit

A year ago yesterday S had her first fit. I've just looked back at what I wrote during the first few days after the fit and I sound pretty hopeful that S would walk again. Several thoughts occur to me about this now. One is that if we had not been so let down by physios she could have managed to walk again - after a fashion and never without support. But I also see now that her walking was becoming more and more erratic in the weeks leading up to the fit and it's very likely that, even without the fit, we would probably have been in a a very similar situation regarding walking as we are now. In fact, S can take a few paces with support and we get her doing this at least once a week She is always keen to do it and I'm sure it does her good in a number of ways. It also makes me think that, in the event of a fire, we could stagger to and out of the front door which is only a couple of metres from the bedroom door.

I also realise that had we not had the crisis a year ago we may have struggled on with the fairly modest level of help we had (6 hours a week) for much longer and that situation could easily have led to more potentially serious falls. It's also unlikely that we would ever have met the wonderful carer K and our other very good carer who have made such a difference to both our lives. And, of course, it's quite possible that, although we would have had to get more help eventually we would not now have nearly as much as we do.

Finally, it's important for me to keep reminding myself that S is not essentially different from how she was just before the fit a year ago and she is actually better cared for now than she was then.

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.

'Just in Case' medication

People with dementia, as well as many other people, are sometimes prescribed 'just in case' medication packs as they approach the end of their lives. The general idea is that appropriate medications should be available to those who are caring for the person approaching the end of their life when they are needed rather than when the surgery or pharmacy may be open.

The BMA have published a very useful paper about this:

http://www.bma.org.uk/support-at-work/gp-practices/service-provision/prescribing/focus-on-anticipatory-prescribing-for-end-of-life-care

Share the Orange

This video is self-explanatory:

Alzheimer’s Is Not Normal Aging — And We Can Cure It

I thought this was worth posting. He says some interesting things but it's a bit of an anti-climax when you realise that, as with so many new ideas that are discussed, there's still a long, long way to go. The images shown from 3.05 are very powerful:

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.....

Reasons for getting a diagnosis

I have always been somewhat somewhat sceptical about the push for more people to get an early diagnosis and I've posted about this before. It took a long time for S's diagnosis to be arrived at, more than a decade. We knew fairly early on that she probably had some form of dementia but nothing more specific.

I know some people and their carers deliberately avoid diagnosis and I can understand this.

However, there are some arguments for seeking a diagnosis:

1) There are drugs available which might help (they may not though and may have side-effects). And some forms of dementia do not really respond to any medication.

2) A diagnosis ought to give you access to a lot of valuable support. But people often report that this desirable result is not forthcoming.

3) Blood tests might show that dementia-like symptoms may be caused by a number of conditions which can often be cured or kept at bay:

http://www.helpguide.org/harvard/whats-causing-your-memory-loss.htm

Music on the Brain

I am very grateful to a member of the Alzheimer's Society's 'Talking Point' forum for posting a link to this very interesting video:

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.....

Alzheimer’s disease could be caused by herpes virus, warn experts

Link to an article in the Daily Telegraph:

http://www.telegraph.co.uk/news/science/science-news/12188092/Alzheimers-disease-could-be-caused-by-herpes-virus-warn-experts.html

Regular readers of the blog will know that the herpes virus HSV-1 has been linked to Alzheimer's Disease by several research studies. There are a number of posts that discuss this. Please enter 'herpes' in the search box (top left) to find these posts.

Interestingly, google shows a link to several other major diseases such as MS and type 2 diabetes. 

End-of-life care

The British Medical Association has produced a report which addresses some important issues and prompts some questions about how people approaching the end of their lives should be treated. These issues are often of great concern to the carers of such people:

http://www.theguardian.com/society/2016/mar/14/doctors-may-treat-dying-patients-for-too-long-finds-bma-report