My Story: Willy

I was telling my dementia diagnosis story and it made me realise I haven't shared it. I was hospitalised in Northampton with depression, but my mood never lifted despite trying every anti-depressant. The consultant psychiatrist diagnosed a personality disorder.

The immediate cause of my depression stopped, but my mood didn't lift, and I noticed I had a lack of empathy. For reasons I cannot adequately explain I became convinced I had an organic brain disease. But 2 eminent psychiatrists told me that was 'impossible'

As at 67 I was too young to have dementia and that I scored 97/100 on a cognitive test. So, they refused any further investigation such as a CT scan. I was discharged from hospital and came to live in Edinburgh. Consultant here said, 'your symptoms are interesting' and he sent me for a CT scan which showed a 'moderate degree of atrophy'. Further SPECT & MRI scans narrowed down the damage to my parietal lobes, but not my hippocampus. A lumbar puncture confirmed that this was caused by Alzheimer's.

I had a lengthy series of in-depth neuro psychological tests which show that my cognition has been affected, though somewhat subtly. My working/verbal memory is compromised, and I have some spatial issues. My visual memory, and my episodic memory is untouched.

18 months ago, I started to notice issues with my eyesight: a black spot in my left field of vision, seeing reflective surfaces as covered in hair, difficulty perceiving black coloured objects. But a 3D retinal scan shows no optical problems - these are caused by my wonky brain.

So, my form of Alzheimer's is different from the 'classic' in which hippocampus damage causes memory loss. Whilst this goes some way towards explaining my psychiatrists' doubts, I think the real issue is that psychiatrists view patients through the lens of mental health.

Whereas dementia is a neurological issue. So, it's as if psychiatrists are electricians who are unable to diagnose a fault with plumbing. I spent months convinced I should be treated for a condition I had but was told I couldn't have.

I have now heard other diagnosis stories to know the system is patchy, to put it mildly. If cancer was as poorly diagnosed as dementia there would be a national scandal. We need to get better at this, to listen to people's concerns and use new developments in testing well.

Willy Gilder, retired journalist and practising artist. Willy is also involved in a dementia research group in Scotland, Ecreds.