OK. Right, the first indication of any problems was probably about nine years ago. Very minor things happened. My wife became less reliable than she had been when asked to do anything. She would cease to, the house, little things in the house were not as clean as they were before. Small things to start with which were noticeable because she had been meticulously clean always.

And then she started to ask me ‘Who was that?’ when wed spoken to someone in the street, someone wed known for years probably but not seen frequently. And then when I tried to explain who they were very often it didn’t seem to ring a bell at all with her.

Then we decided it would be as well to see the GP about all this and the GP suggested that another appointment of about twenty minutes, and he suggested she almost certainly was starting to develop Alzheimer’s disease which was a fear shed had, shed expressed a fear of this, a vague fear previously.

The GP didn’t leave it at that fortunately but referred us to a local hospital and the doctor there who took great interest in these kind of situations said something that wasn’t quite right as far as the diagnosis, the GP’s diagnosis went. And she had scans, MRI and – what’s the other one called? – MRI, CAT, and CAT scans and they both showed no brain shrinkage, no problems which puzzled him a bit.

So we were then referred to a consultant who in more detail, went into more detail and admitted to being rather baffled and asked us if we were prepared to go to [town] to see a Professor [name] at the medical research council there. Which we duly did. We had a full day’s appointment starting at nine in the morning which went on until about three in the afternoon, saw Professor [name] and then various other doctors.

They wrote and asked if my wife would be prepared to go into [name] hospital at [town] for a week for full tests to further try to establish exactly what was wrong. Which eventually turned out actually to be Pick’s disease with the sub heading fronto-temporal dementia. This was all explained to us, what the problems were and the differences in Alzheimer’s.

I think perhaps the most difficult thing there is that none of the hospitals appear to be geared up, geared up perhaps is over-stating what I mean, but understanding of people with any form of dementia. They just assume that people are OK mentally and if they’re not then there doesn’t appear to be any way in which they can cope within the system.

And certainly on several occasions when my wife was being asked questions, questions which the person answering wouldn’t know whether they were right or wrong, by me being there and knowing it was my wife, and knowing they were wrong, I found that they were pretty reluctant to actually talk to me. And on several occasions I had to say “That is not the situation between my wife and I”.

For example, they were asking my wife if she had sex and she said Yes, regularly. I knew full well that we hadn’t had any sex for a number of years. I knew it was the wrong answer. But the person asking the questions wouldn’t know that it was a right or wrong answer. Thats only one example of the type of questions that were being asked that I knew full well from sitting there that my wife was giving an incorrect answer. Which again the person answering, asking the questions wouldn’t have had a clue whether it was the right or wrong answer.

So I think that, and indeed I did make one recommendation to one consultant that we saw that it might not be a bad idea to have a set of questions for the carer, if they’re a close carer, not necessarily the same questions that they were asking the person that they were asking the questions of, but asking if they had experienced any behavioural changes. And indeed I did sit down – I haven’t got a copy now, but I wish I had – but I did sit down at one stage and list all of the types of changes and it, and experiences of the changes that had taken place with my wife.

And I did suggest that it might not be a bad idea to ask the carer questions as well. Because I am sure that the carer can give a lot of information about the changes because they’re the one thats seeing and experiencing the changes that are taking place. Which could perhaps help earlier with a diagnosis. Im not sure if it could help with diagnosing what form of Alzheimers it actually is. You might even be able to do that or, or help along the way.

But I found that a number of the hospital staff were not taking any notice of what I wanted to say sometimes for and on behalf of my wife and sometimes to assist the person answering the questions to, get more of an understanding of what the situation was, really was. Than what they were getting from asking my wife the questions and didn’t realise until the latter stages that my wife was saying yes in some places and sometimes it was a yes; but in other cases it was a yes and it should have been a no.

But she was sometimes not able to interpret the words or indeed understand what she was being asked, to understand, to be able to give an answer to the question. So I think I, one of the biggest problems I found was one, hospital staff not understanding people with dementia and two, when you are in a situation where they could get more information from the carer to help with the diagnosis they were not doing that.

I think that, once the diagnosis is made Im not sure if a consultant or any of the researchers have a responsibility to do it, but once a diagnosis is made I think thats probably where communication ought to start to help the carer. Whether that communication, I assume that it goes back to the GP, we didn’t see the GP anymore after the diagnosis from the consultant.

But even if it’s to the nearest branch of the Alzheimer’s Society, even if it’s to social Services, I’m not sure who that communication would be, should be with because I’m not totally sure what of what the networking is yet.  But I think that’s where the support should eventually stem from, a support for the carer as well as for the person that’s been diagnosed with dementia.  Because once a dementia really sets in then there’s little help that we can give to that person.  And the person that needs the support to carry on and to support the person with dementia as much as they possibly can is the, is the carer.