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

Relationships in care homes

I gather that some 'care homes', believe they have a right, a duty even, to separate two residents who have developed a close relationship  -  even to the point of asking for one of them to be moved elsewhere. I'm finding it hard to believe that an organisation thinks it has the right to interfere with such a relationship simply because the two people involved are living with dementia. Of course, if there appeared to have been any evidence of coercion of one person by another there would need to be some investigation and probably action, but whether two people are just good friends  -  holding hands say  -  or decide to take things further, they have, prima facie, the same rights as any other people. This is, after all the twenty-first century.

A useful way of looking at the whole issue, and it can be applied to many other areas, is whether the fact that the two people involved are living with dementia inevitably means that there are different rules that should be applied to them by people who aren't living with dementia and therefore know 'better'. Many people not living with dementia get themselves into relationships which their 'loved ones' and others deem ill-advised. People without dementia may misunderstand what the other person in a relationship really wants, may abuse the other person mentally and physically, sometimes to the point of murder, and generally make their close relatives very unhappy.

Such a relationship may upset other people, become embarrassing to other people, make life complicated - all things that can happen when any relationship between any two human beings develops.

Take a situation where two people in a care home living with dementia and having no living family develop a relationship which becomes physical. Is that 'acceptable'?

If someone is unequivocally incapable of making a decision as to whether they want a relationship, physical or otherwise, then clearly action is required. But just to mention 'capacity' is not a good enough reason to act. People can easily disagree about it and it is a slippery concept at the best of times.

I hope and suspect that most care homes would recognise the subtleties involved and not have a blanket ban on relationships between residents.

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.