Thursday, 15 November 2012

Fast-track diagnosis

There's currently a considerable amount of hype about a new state-of-the-art fast-track system for diagnosing dementia (which will of course make some entrepreneurs very rich).  We're told it is very important for people to have an early diagnosis.

I'd like to state an alternative view that I have mentioned before.

1) Even with the most sophisticated scans, it is still true that Dementias can only be properly diagnosed post mortem.

2) The fact above may not even be a fact. Read about the nun study:

My wife was only 'diagnosed' after being investigated by a leading memory clinic for twelve years. Throughout that time she had increasing difficulties. But she also had access, at different points, to two of the much-vaunted small handful of drugs which people awaiting diagnosis and their families understandably have such high hopes for. They didn't help and had unpleasant side-effects.

During those twelve years we got married, our children got married, my wife had her first grandchild, we went on some wonderful holidays, we enjoyed our life together to the fullest extent possible.

If we had had a diagnosis earlier, how would it have helped?

Some people suggest that an early diagnosis would enable you to make the most of the time you have left. I disagree. We had all that precious extra time without an explicit death sentence hanging over us. Our Guru said: 'Live a good life'. That's all you can hope to do, with or without a diagnosis. But I reckon it's been a lot easier without.

And I'm not saying it's been easy!

Finally, because we had such a good 'pre-diagnosis' we've managed to carry on enjoying life when we can, after a fashion. As the early part of this blog details, my wife had a terrible period just after the diagnosis (there's a surprise!) but she has improved since then. (Steady now! People with dementia aren't supposed to improve. It's not allowed.)


  1. Hi there. My dad had a diagnosis of vascular dementia about a year and a half ago. It was devastating. He is now understandably living through this diagnosis of is a death sentence, one which he doesn't know when it's going to hit and get worse. He's had so much ill health in his life but this dementia is stripping him bare to the core. All his perceptions of who he is are being challenged and he is frightened of forgetting who he is. Such fear and anxiety. How can you feel good about it.? We are trying to make the most of everything. The only way for me to do that is by visiting without my children so I can spend quality time with him.. And support my mum, without whom he would be literally and truly lost.livng the good life you write about is so important but so hard. How do you do it?

  2. Thank you so much for your comment. Living a good life is the aim. As I said, It's not easy. But I can see no sensible alternative to trying to remain as positive as possible. I try to treasure those brief moments when there is a connection - I'm sure you do too when visiting alone and spendng some quality time with your dad. I have aslo found that reading as much about the disease and about the experience of other carers has been a help. If you don't know about it already, the Alzheimer's Society forum 'Talking Point' is a wonderful resource for this - and it's open to people from outside the UK too.

    Take care