A request from TV documentary producers

I thought there might be people reading this blog who would be interested in this information:

A request from TV documentary producers:

We're very keen to hear from people who would be prepared to speak to us, on an off-record basis, about their experiences of dementia care homes. We're particularly interested to hear from people who are currently seeking suitable residential care, and from those who have experience of anti-psychotics. Feedback from those working within the care profession is also most welcome. 

Please contact Libby@hardcashproductions.com if you'd like to know more.

How S has improved

I thought I'd summarise all the improvements in S's condition since her dramatic decline in the autumn, and list the things that could have helped to produce the improvement. There's absolutely no doubt that there has been a dramatic improvement  -  everyone who sees her now, including 'professionals', comments on the visible, and obvious, signs. She still has some days when things aren't as good as usual  -  she can still have sudden outbursts of aggression or sobbing, caused by frustration, but are very much briefer than they were during the worst times.

In no particular order of significance:

1) It's now possible to get S's more or less immediate attention when I need to. Even when she's very agitated and distracted, if I wait a minute or so and try again, we're usually successful.

2) Food and drink are hardly an issue now. When S lost so much weight  -  she was well below 8 stone and it was still falling  -  my attempts to get her to eat and drink dominated our days and caused great stress to us both. Now she has regained most of the weight she lost and has a good appetite. I no longer have to worry at all about nutrition.

3) At the depth of the autumn decline it was incredibly hard to get S into the bath. She hated it and seemed to have no idea how to get in or out. Two of us had to more or less lift her in and out  -  with little or no co-operation from her. Now I help her bathe almost every day. She steps in and out, just holding my hand and/or the wash basin for support. I think she gets to her feet from a sitting position more easily than I do! And I'm a pretty fit 67 year old!

4) Previously when I handed her her glasses she would often grab my hand rather than the glasses. She rarely does now. Similarly, when she got into bed it was very hard to get her head on the pillow  -  she would end up too high or too low in the bed and I would have to physically move her up or down, something she often resisted. Now she either gets it right first time or responds to instructions to move up or down without protest.

5) During the bad spell, she frequently referred to herself in the third person. I found this quite disturbing. She doesn't do this now.

6) S will now sit calm and still for longish periods, even when nothing much is happening.

7) She used to be incredibly sensitive to touch and would complain 'that hurts' almost whenever you touched her. She is still more sensitive than she used to be, but not nearly as sensitive as she was during the bad spell.

8) Radio and TV programmes will grab her attention, sometimes briefly but often for longer. She will often comment appropriately about something on the news. She follows many of the jokes on '10 o'clock Live'.
She never quite lost this in the autumn but it's become a lot more common now.

9) She is far more aware of other people, and will greet them appropriately and respond when they speak to her. She went through a period when she completely ignored other people.

I've probably missed a few of the improvements and will continue to revisit this topic as appropriate.

The things that may have helped to bring about these improvements probably warrant a separate post.

Where are all the male carers?

As we've finally managed to find out about various local groups and activities for people with dementia and their carers, we're meeting more and more of these people. Most of them are older as these sessions are open to all and the vast majority of people with the condition are older. There are obviously men and women but what you can't help noticing is that very few, if any, women are brought by male carers. They're brought by sons or daughters or by paid carers whereas many of the men seem to be accompanied by their partners.

I suppose the fact that women generally live longer than men means that some of the women we see are widows but you can't help wondering where the women who still have living partners are.

Something to think about

If S was on one of  the drugs used to treat people with dementia  -  which she could be  -  I and the professionals would no doubt be absolutely convinced that the recent improvements have been brought about by the medication.

When you look at the 'small print', even the drug companies often only claim that a minority of people taking the drug will show any benefit. If the improvement for some of these patients is actually brought about by something else, the drugs are even less successful than they would appear to be (i.e. they're not very successful at all).

More about HSV 1 and beta amyloid

This blog post is another clear explanation of the possible (likely?) link between the Herpes virus and many cases of Alzheimer's. It also clarifies the uncertainties about whether beta amyloid is a cause of, or a reaction to, the disease.

'Completely, utterly, Italy...'

Something S said in the course of conversation with 'friends'. These bits of word play occur fairly regularly but I often forget to write them down. Italy is by far her favourite country for holidays, by the way.

It's interesting that although S's conversations often include nonsense words which seem to just act as fillers, she can distinguish nonsense words  -  even in the context of a nonsense song. She has reflexology once a week with a friend who puts on Beatles music and they sing along. The friend introduces various nonsense phrases into the lyrics  -  'We all live in a tub of margarine' e.g,  -  and this always produces gales of laughter.

A Herpes Vaccine may help

If, as seems at least possible, the Herpes Simplex virus is either a cause of, or a contributory factor in, the development of Alzheimer's disease in people carrying a particular gene (the research is summarised here), then the vaccine against Herpes Simplex (discussed here) offers some hope for these people. 

Another interesting drug?

A recent article suggests another fairly common drug that might be useful in treating Alzheimer's (as well as in treating Schizophrenia). I'm particularly interested in the reference to its apparent ability to alleviate symptoms such as auditory hallucinations which is the most debilitating symptom that S suffers from since it makes concentration on anything other than the hallucinations very hard.

A strange statistic

'In 2006, there were 26.6 million (Alzheimer's) sufferers worldwide.' [Wikipedia]
This figure, or one close to it, is quoted time and again. Yet if 1 in 3 of us will develop AD, the number of sufferers worldwide must surely be vastly greater than 26.6 million. Now I can think of a couple of reasons why the proportion of sufferers in other countries might be smaller. In many developing countries people die, on average, much younger, and as Alzheimer's is predominantly a disease of old age most people probably die long before they develop it. Also, we know that the condition often goes undiagnosed even in our relatively developed country so it must be hugely underdiagnosed elsewhere. Even so, I would be very interested to know how the figure has been calculated and whether there are any other explanations for it not being very much higher.

They should have seen her a few months ago

No doubt many people meeting/seeing S for the first time view her as someone with severe mental health problems. I've got used to our walking being constantly accompanied by her seemingly endless stream of conversation with her 'friends', much of it loud and agitated, but I can imagine that some of the people we pass find it unsettling. They would have found her behaviour even more disturbing a while ago.

On a bus, I'm even more 'on edge' about it. But it's encouraging that I can get her to reduce the volume when I feel it's getting anti-social. During the course of two bus journeys today, when she was talking  -  there were significant periods of silence  -  it was done so quietly that I doubt whether anyone noticed anything unusual. And this was without any intervention from me. So this is another thing that has improved.

Happily, it's not just me who sees improvements  -  I would start to doubt myself if it was. It's becoming very noticeable how everyone, including experienced professionals, who saw S back in the late autumn when she was going through the most difficult time, express surprise bordering on amazement when they see her now. People mention her calmness, her happiness, the fact that she looks so much healthier now that she regained some of the weight she lost and the fact that she clearly follows conversations much better, even though she often has difficulty making herself understood when she tries to participate.

Of course, everyone would like to know how this has been achieved. Join the club!

Naturally, I do have some ideas about this. I've mentioned some of them here. I'll try to pull all these ideas together in one post very soon.

Meeting an Admiral Nurse

Admiral Nurses are dedicated to helping dementia sufferers, and particularly their carers, in the same way that Macmillan nurses work with people who have cancer. I'd been promised, by our Care Co-ordinator (from the Young Onset Service) that I would be able to have regular meetings with an Admiral Nurse. I felt this could be a great help to me as they obviously have an enormous amount of knowledge and experience and are also trained counsellors. Incidentally, this is one advantage of living in a metropolitan area  -  whole swathes of the population do not have access to Admiral Nurses. Scandalously, there are (according to the dementia UK website) only eighty five Admiral Nurses nationwide and they tend to be concentrated in a few places. However, anyone reading this who thinks they would benefit from a conversation with an Admiral Nurse can try calling 0845 257 9406 or can email: emaildirect@dementiauk.org.

I found the meeting very helpful. Some weeks ago I was aware of being so stressed that I went to the GP about it. He referred me for counselling so I also, eventually, have that as an option. But I think the AN who is a good listener and does not claim to 'know it all', who avoids generalisations and who appears to know a lot about various projects and groups in the area which might be helpful to S is going to be a great asset to me, and therefore to S -  their philosophy is to work with the carer in order to help both the carer and the person being cared for.

After the disappointments of the Young Onset Service, this could be a real boost.

Other improvements

Another example of the way that things have improved is that the disorientation in space that I discussed here is rarely evident now. Although S often takes her glasses off  -  for reasons that aren't really clear  -  when I hand them to her she always takes hold of them rather than my hand. Similarly when she gets into bed she usually manages to get her head onto the pillow in more or less the right place.

Another very helpful improvement is that nine times out of ten S is now able to get in and out of the bath with little or no assistance. For a period both I and her daughter had to help her and, even then, it was incredibly difficult.

There's no very obvious explanation for these and the other improvements I've recorded. I think maybe something else was going on and making things far worse during the autumn and whatever it was is no longer affecting her. It might come back, of course, but at least for now life is significantly better for both of us.