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 'breakthrough' in treatment that might actually deliver worthwhile treatment

As we know, stories like this come along all the time but this does sound more promising:

https://www.newscientist.com/article/2099108-alzheimers-drug-that-failed-trial-may-still-slow-disease/

UPDATE:

Sadly this story was shot down almost immediately:

http://www.alzforum.org/news/conference-coverage/first-phase-3-trial-tau-drug-lmtm-did-not-work-period

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.

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:

The recent drop in the number of people developing dementia

It has recently become clear that in the UK dementia has fallen by a fifth over the past 20 years. This is possibly down to lifestyle and education changes. If so this highlights the potential benefits of preventative action:

http://www.theguardian.com/society/2016/apr/19/drop-in-dementia-rates-suggests-disease-can-be-prevented-researchers-say

However a letter published in the Guardian suggests another possible reason for the reduction:

http://www.theguardian.com/society/2016/apr/21/perhaps-unleaded-petrol-heads-are-less-susceptible-to-dementia

I think most people know what a healthy lifestyle involves and it obviously makes sense to try to live healthily. However it is important to realise that there can be no guarantee that a healthy lifestyle will stop the development of dementia in an individual case. And therefore the fact that some people who live a healthy life still develop dementia should not discourage people from taking the steps that may well improve their chances of avoiding dementia.

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:

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

The loss of abilities

This post was prompted by someone mentioning online that her husband is only able to blow his nose intermittently which is, of course, very frustrating.  But it seems to me that this is the way that abilities mostly disappear - gradually. S hasn't been able to blow her nose for ages and prior to losing the ability it was very much hit or miss as it was also with, for example, spitting out teeth cleaning water or successfully negotiating stairs. I suppose at least when it starts to happen you can look at ways to compensate for the loss (if they exist!). So when the stairs are increasingly difficult it's time to look at stairlifts or moving downstairs. When an ability disappears suddenly it can be devastating. Following S's first fit she effectively lost her mobility in 48 hours and it has taken me months to accept this.

However abilities disappear, it's always a sad reminder of what else is to come. So I think it's all the more important to celebrate things that can still be done. For ten days or so, S has been more vocal than she has for many months. She's not making any sense but it's still somehow good to hear. Her first sounds this morning were "I know!" followed by made up words and unintelligible sounds. I haven't heard her say very much that makes sense apart from 'yes' 'no' or 'thank you' for a long time so it was quite a good way to start the day

The importance of diet

The more I read and about and experience the effects of various diets on people with dementia, the more it seems to me that every person with dementia (every person, come to that) really needs a diet to be arrived at, by knowledge of them and by experimentation, that meets their particular needs. Their particular dietary regime then needs to be followed consistently. In certain cases, where someone has dementia involving, for example faecal incontinence, or has an additional diagnosed disease, the consequences of not getting the right diet are potentially serious.

What are the chances of the diet being consistently observed in any Care Home or hospital?

Another reason, if you are caring for a family member, for looking after them at home for as long as you possible can.

The NHS Continuing Health Care Process

This should be helpful to anyone in the UK who is trying to obtain National Health Service Continuing Health Care Funding. The link below will take you to a booklet which includes a lot of information about the CHC Process and I think the Flow Chart at the beginning is particularly good:

https://www.england.nhs.uk/wp-content/uploads/2015/04/guide-hlth-socl-care-practnrs.pdf

Fit number 3

S had another fit today. Our carer had not been here long and was feeding S her lunch. I was in the kitchen when the carer called me to come quickly. I went straight in and it was just like the last fit. We lowered the bed and got her into the recovery position. There was a small bit of regurgitated fruit that came out and the dreadful-sounding gurgling breathing. The carer asked if we should phone for an ambulance but I reminded her that the GP said, after the last fit, that we call the surgery and he or the other partner would come as soon as they could. So rather than ringing 999 we decided to hold on. The surgery was closed for lunch so we couldn't call for 15 mins.

The fit subsided after about 8 mins though it's difficult to be exact as she was fairly passive during and after and the breathing gradually sounded a bit more normal as she seemed to drift onto quite a deep sleep. I was able to use the oxymeter and found the level was normal, at 97, even during the fit. This was a bit of a relief. Temperature was also normal.

At bang on 2 when the surgery opened, I phoned and got straight through! The receptionist talked to the GP on the phone and eventually came back with the message that he would call round in about 30 mins.

When he came S was pretty much back to normal, though tired. He did her BP and listened to her chest - no problems. We discussed whether she should be on an anticonvulsant and he thought that as all three fits had happened at similar times and she is nearly always on the hospital bed or in the wheelchair, comparatively safe, it was probably better to avoid the possibility of complications with other meds, at least for the time being. Fine by me.

So all in all, much less traumatic and tedious than the ambulance trips to A and E for the day, yet the same positive news that we would have got there. I would do the same again unless the oxygen level was a concern.

It's still very scary - particularly for the carers who hasn't seen S have a fit before - but I'm glad we held our nerve.

S soon ate the rest of her lunch quite happily and is, as far as we can see, back to normal.

No wonder people are confused

I'm sceptical about this article and not just because it's in the Daily Mail:

http://www.dailymail.co.uk/news/article-3413873/Alzheimer-s-cause-discovered-Poisonous-algae-freshwater-lakes-reservoirs-UK-fuelling-dementia-epidemic-afflicting-1m-people.html#ixzz3y9MDkzK4

I also read in latest issue of 'The Week' an article which quotes Professor John Hardy telling the Royal Society about 'drugs to halt AD within a decade'. The Week article and also contains this 'fact' (though it's not clear where it comes from):

Since 1980, there has been a 20% drop in dementia incidence (in Britain), possibly as a result of people taking actions to reduce their cholesterol levels.

I've never seen this before and most statistics suggest a growing problem. The Mail article talks of 'increasing rates of Alzheimer's'.

And even if it is true I think his possible reason is pretty implausible.

So much of the stuff you read about AD, even when you discount the massive amount of obvious twaddle, contradicts other stuff. And the media never delve into these matters in any detail at all but just wait for the next press release to come along.

Finally, so many of the articles and news items talk about dementia and Alzheimer's as if they are one condition with one cause (whatever that happens to be this week).

Pure ignorance across the board.

Early diagnosis

I have touched on this before, but I still feel strongly that the emphasis placed on early diagnosis of dementia is not necessarily helpful. I'm really talking about attempts to diagnose the exact type of dementia which is deemed necessary but is often much more problematic than people realise. I read regularly about people who have been 'diagnosed' after seemingly minimal investigation. Each time we attended the memory clinic a leading expert on dementia told us that there was a definite problem but that an exact diagnosis was not easy. Every avenue was explored until, 11 or 12 years after the initial referral, we did get a diagnosis, for what that was worth. After each appointment I spent time reminding my wife of all the positives that the expert professor had mentioned - he was a very positive guy, urging us to live as good a life as we could. We carried on doing everything we were still able to do, with increasingly frequent adaptations, finding ways to compensate somewhat for the abilities that were failing.

Do I look back at this with regret? Absolutely not! A diagnosis is just a word or two. It's not uncommon for diagnoses to be changed, sometimes more than once as the condition progresses. Drugs may work a bit for some people and help with some of the symptoms. None of them helped S and she had some unpleasant side-effects.

I would just advise other carers to concentrate on what the person they care for can still do and to find ways of compensating for the abilities that are less secure. We have had 16 years since the clinic referral and had some wonderful times. Of course, it's much more difficult now, but life goes on. I hope you will have many more years together.

Horses for courses

Those looking after a person living with dementia often discuss the best way of dealing with the situation where the person you are caring for believes something that is not true  -  believing that their partner is their parent, for example. 

I think that you have to play it by ear depending on your own circumstances. You will find some people for whom honesty will always be the best policy and others who will always go along with what the person they care for says, even adding details they have invented themselves to the person's 'story' . I tend to try not to go down the path of invention which, it seems, can easily get out of hand and even catch you out. Often a bit of distraction works and you don't even need to start spinning an appropriate story. But the ultimate test is what is most likely to make the person feel happy or, at least, untroubled.