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.

Progress report

There's no doubt that, over the last few weeks, things have improved significantly for us. As I've noted before, we have started getting out for walks again, though the weather is sometimes a deterrent. Even though S talks non-stop all the while we are walking and is often quite agitated this seems to 'get it out of her system' and she will sit quietly for a long time when we get home. It's also encouraging that her walking is as good as it's been for years. We've also been supermarket shopping together and had lunch in the cafe without any problem. On another occasion, we stopped off for a pub lunch whilst out walking. These are simple things but, when life was at its worst I didn't really expect to be able to do them again. You may be wondering how this has happened. The support we've had from family, friends and 'online friends' have certainly been invaluable. I know from reading online forums how many dementia sufferers, particularly the elderly, have to spend so much time 'home alone' and how many carers seem to have little in the way of support and my heart goes out to them. I think also that we've got more used to our situation - the sudden decline last autumn really hit me like a brick so that even though I'd always known that things would get worse I'd never expected it to happen so dramatically and then for a while things just seemed to carry on getting worse. I realise now that S was probably just as shocked and distressed as I was and that she didn't want to be the apparently helpless person that she seemed to be so has been making real efforts to respond to my suggestions, requests, and thoughts about what might help. Over time too her 'conversations' have become generally quieter and are not quite as negative as they were - more happy talk - though she still gets agitated and aggressive in brief bursts. Getting her to bed has become so much simpler than it was at one time as we have established a routine and she rarely protests when I or her daughter (who is still round at bedtime a couple of times a week) suggest going up to get ready for bed. Plus we've got better continence aids at night from the clinic so this cuts down the washing and means we both get a better night's sleep as S does not wake up too early. There has also been some improvement in terms of the incontinence.And there's good news on the food and drink front. Sheer persistence and lots of tips from different people, including the community dietician, have worked. I just have to accept that she is keener to talk than to eat and that meals take a long time. I tend to do a lot of calorie rich sandwiches but some kind of evening meal with dessert for which we sit up at the table. This week we've started sitting up at the table for breakfast too. S is only drinking apple juice at the moment but drinks a lot. Now she is over 8 stone and gaining weight all the time. People keep telling her she looks better. She does, and I keep reminding her that this is because she is eating and drinking properly. Support from professionals is still very patchy but I was put in touch with carer with long experience of working in dementia homes and I pay for a few hours from her each week. She gets on well with S, who really likes her and the carer is able to do more for her and with her as she gains her confidence. So I'm able to do a little more of the things I need to do and even some of the things I want to do! I think both of us are benefiting from this arrangement. In the last few week both my stepdaughter and I have noticed that S is more aware of us, asking how we are and responding more often to attempts to talk to her. She's also taking the initiative more with the cats which I'm very glad about as we got them for her but initially she barely seemed to notice them despite being a lifelong cat lover. There could be all sorts of reasons for this but I'm pretty much convinced that the fact that I've carried on giving her small daily doses of Aciclovir - the anti-viral drug prescribed for her herpes outbreak is a factor in the general improvement. 
(New readers see this: http://adventureswithdementia.blogspot.com/2012/01/more-about-possible-relationship.html)


So all in all, there's a lot to be grateful for but I keep reminding myself not to expect too much.

Another breakthrough?

This will be really familiar to anyone in my situation.  Some research is announced which seems to promise, at some point in the distant future, a 'cure for Alzheimer's'.  This one was the lead item on Channel 4 news last night (but if the BBC covered it I missed it).

It is exciting that a new avenue for research has opened up.  But immediately you start to calculate the chances of your loved one surviving long enough to benefit  -  not great.  Then you note that the drug in question has serious side effects.  In S's case this is very bad news as she almost always seems to get whatever side effect are going with any 'safe' drug   -  and often fails to get any benefit either.  Then it's always a worry when the researchers, as in this case judging by their astonishment, have no idea how the drug works.

Then you remember that there is no agreement as to whether the amyloid plaque, which the drug seems to remove in the brains of mice, is actually the cause of the dementia.  Some researchers have suggested that it may not be a good idea to remove it even if you could.

It is interesting to note that in this case the researchers are claiming that removing the amyloid material did result in improved behaviour and memory because the recent stories about a 'wonder vaccination' seemed to stall with the discovery that the vaccine removed the amyloid but did not restore the memories.

And a spokesperson for the Alzheimer's Society is always wheeled on to warn against false hope, in this case stressing that what happens in a mouse's brain is not always comparable to what happens in the much more complex human brain.

Most likely we won't hear anything more about this for quite a long time.  Remember my recent herpes post about the exciting research from at least five years ago that appeared to show that a cheap and 'safe' anti-viral drug, Aciclovir, could have a similar effect to this skin cancer drug now being hyped?  By and large this has got us nowhere yet.

One thing's for sure.  There'll be yet another 'breakthrough' tomorrow.  Or next week.

In the meantime, we struggle on.