Basket | Login | Register


Hilary Doxford writes “A new (un)diagnostic tool?”

Tuesday 23 August 2016

Have we found a new (un)diagnostic tool? I don’t think so. So why do I ask?

One aspect of my voluntary work concerns me. I come over as ‘normal’ because I am fortunate in that although my IQ has dropped dramatically, the last time I was assessed I was still above average. This allows me to relatively easily mask the many difficulties I now encounter when trying to process information.  Does appearing ‘normal’ do more harm than good when trying to gain the support of people who do not understand dementia?

What concerns and disappoints me, are the number of people with experience of dementia who at conferences will say that the person with dementia (PWD) speaking does not in fact have dementia. It has happened to many of my friends and myself. Very few people will say it to our faces, but will say it to our friends and family members. If they have the knowledge they proclaim, do they not understand the progression of this disease? The early stages are not visible. But for every 15 minute presentation we give, we have done many hours of preparation to try and be as good as we can be.

To those who question us, if you are trying to give me hope, then thank you, but that is not what I hear. I try not to take it personally, but feel I am being told I am a fraud and a liar. It is not the PWD who ‘confirms’ the diagnosis, we only pass on what we have been told. In my case, two separate neurologists have independently told me I have dementia. If a lay person told me I didn’t have it, that is perfectly acceptable to me, because I understand and would have said the same a few years ago before I understood this disease. But for someone with knowledge of dementia to say this, is it really acceptable? In fact, they are criticising their qualified peers, who following rigorous tests, give the diagnoses. I know we can be misdiagnosed and how hard it is to be correctly diagnosed, but I do not think anyone can give an informed opinion on the basis of hearing PWD talking in public of their experiences.

If you haven’t yet seen it, please, please watch the BBC Panorama programme on Living with Dementia, ‘Chris’ story’ . Chris and his wife Jayne are a lovely couple, who inspire me and I consider really good friends. If you met Chris or listened to him speaking it would be a while before you realised just what he is dealing with. Now watch the programme and you will see just what he and his family are dealing with – they are amazing, brave and incredible role models.

So to all those who tell me and my friends that we haven’t got dementia, I say, I pray you are right. But please remember, our public face does not reflect what goes on behind closed doors or inside our wayward brains.

Hilary Doxford

Vice-chair, EWGPWD