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.