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

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

A problem with research

There are daily reports of dementia-related research. A recent study, reported by Reuters Health (and others no doubt) suggests that 'repeated use of a certain class of drugs for gastric reflux or peptic ulcers was linked with a higher risk for dementia among patients in Germany'.

I'm interested in this as I've been on Lansoprazole or Prevacid (one of the drugs mentioned) for several years, though rarely on a large dose. After a period of only taking it when I really felt discomfort I recently decided to try and manage without it. Purely coincidentally I also cut right back on milk after I came across Oatly products and liked them. After a couple of months I have had very few problems with acid reflux. (I have also drunk fresh lemon juice first thing in the morning for several years and found that that helps, by the way.)

But Google reveals that lansoprazole allegedly lowers blood pressure.......and raises it! Maybe there'll be research along soon suggesting that it protects against dementia.

It seems that, as some people in the UK used to say (perhaps they still do)  'you pays your money and you takes your choice'.

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.

An Update on S

I realise that I'm probably posting less about S these days. I've mentioned her two fits this year and given readers some idea of how the loss of mobility has changed our lives. But I feel that I have not properly recorded how NHS Continuing Healthcare Funding is helping us to get back to a way of life more like the one we had before the first fit. We are able to employ carers who not only help me carry out basic tasks like getting S safely onto the commode or into a bath but also accompany me when I take S out in the wheelchair which we do as often as we can. It's clear that she really enjoys getting out of the house after months of 'imprisonment', just like me! We have also exchanged our car for a wheelchair accessible vehicle. After a little practice we can get S and the chair up a ramp, into the car and have both the chair and S safely strapped in very quickly. We have been able to return to the weekly 'Singing for the Brain' sessions that we so enjoy. S occasionally joins in with the singing and always enjoys the social side, meeting people we have have now known for several years. But such activities are also quite tiring for her now. She often dozes, after a late breakfast, and wakes up at lunchtime but if she has had a busy day the day before she sometimes sleeps for much of the afternoon.

It helps enormously that we have one extremely positive and helpful carer who we see nearly every day and have just appointed a second carer who will clearly be very helpful as well.

Despite this I am still solely responsible for S's health and welfare for many more hours in the week than I am jointly responsible with a carer. I do feel down at times when I'm coping on my own, particularly when things are not looking good. But I always appreciate the fact that being able to look after S personally, with very helpful support, is a great privilege. I don't know how I would cope if she were being looked after elsewhere.

In the Personal Budget, there is financial provision for 'respite'. This is normally taken to mean that the person living with dementia is looked after for a short period in a care home or by home carers whilst their partner has a break from caring. I have not yet reached a point where I would feel happy doing this. I currently use the money to pay for home care one evening a week to enable me to go back to a jazz improvisation group I was attending before S lost her mobility. I do find this therapeutic.

I will try to post more regular updates on S as we are learning new things about how to cope fair regularly