Most people with dementia end up missing out on their hard-earned retirement years. But I’m missing out at an even earlier stage. I’m 59, with a decade of my working life left, but I have struggled to find employment ever since my diagnosis with a form of dementia called posterior cortical atrophy (PCA).
When I was a younger man I was in the army, leaving in 1988 at the age of 28. After that, I did three months of basic IT training and got a job with a retail business.
After 18 months I went freelance as an IT consultant, starting at a large bank; and regular contracts came along one after the other from that point on.
As I grew in experience I began to get work abroad – in Scandinavia, Poland, Czechoslovakia, America, and Australia. I progressed from retail to financial systems and then government, rather than private, contracts: for the Ministry of Justice, the Home Office and the Ministry of Defence.
My career was going from strength to strength, but when I was about 53 I started having some issues. At first it just felt as if I’d lost my mojo – it was a difficult time with the credit crunch, and my wife wasn’t well, so it all felt a bit heavy-going. The contract that I was working on was going well, but I was feeling pressured, whereas before I had always coped.
One day in 2014 I was driving to work in Birmingham as usual and suddenly I was unable to work out which lane of the M40 I should be in. It was raining, there were four or five lanes and they looked like a kaleidoscope, almost – I couldn’t decide which one was my lane. I managed to get to work in the end, but had the same problem on the drive home.
I’ve always been very proactive about my health – I’d always been fit and well – so I went to my GP. She, like I, initially thought it was just stress, but I’ve never just accepted the first option, and pushed to check it out further to see if there was anything else. My GP agreed, and put further tests in motion to explore any other potential issues around mental health and other possibilities, including dementia.
I went to a memory clinic, a psychiatrist and a psychologist. Each of them agreed that it probably was stress. I had an MRI scan and nothing showed up. Again, being proactive, I asked if we could redo the tests in 12 months’ time. So we did the whole thing again, but this time the MRI scan showed some atrophy at the back of the brain.
Finally I was diagnosed with posterior cortical atrophy (PCA). I got the diagnosis just before my wife and I were going to the seaside for the weekend. We drove to the hospital expecting to again be told that it was just stress, but instead the doctor said “No, you’ve actually got dementia”. It hit my wife very hard, she was very upset about it all. I’m a bit more pragmatic about these things.
Unlike classic Alzheimer’s, PCA is less about memory and more about the visual aspect, in the early stages. As far as I’m aware my memory is OK and that will persist for most of my life, until the latter stages, when the symptoms become more like those of Alzheimer’s disease.
In terms of work, I’ve still got all my knowledge and experience. The last contract I had after diagnosis was for a government department in Bristol. This was the kind of contract that I would normally expect to have been extended, but they decided they couldn’t keep me on because I wasn’t able to keep up with the work – mainly because of my visual impairment.
And since then I’ve not been able to work.
I can do interviews, I get job offers every day by email, but as soon as you mention visual impairment, problems with eyesight, people shy away. Since I finished my last job in November last year I’ve been interviewing constantly and haven’t been able to pick up any work.
From my perspective, it seems as if there is no awareness of the issue of people like me: of working age, with a dementia diagnosis but still able (and keen) to carry on working.
The RNIB advise you that you don’t need to declare your condition in interviews, but I think that’s a bit like getting married and then saying: “Oh, by the way, I’ve got three kids”. So I do the interview, demonstrate that I know what I’m talking about and that I’m motivated and can do the job and then at the end, when they ask if I’ve got any more questions, I’ll tell them that I have a visual impairment that will require one or two reasonable adjustments in the workplace. And then it all goes quiet.
It’s like falling off a cliff. I used to say I’ve never had a day off work, but now I’ve not been able to get work for 12 months, and that’s never ever happened before.
It’s very frustrating. I’ve got my wife to take care of and she’s struggling a bit. I try to get myself out of bed in the morning, but it’s a bit of a battle.
I’ve still got a lot to give. I’m very motivated, I’ve got experience of very many projects, I’ve worked at high levels, so I don’t see why, with a bit of help with ways of working, I can’t get employment now.
So many people I speak to get given their diagnosis of dementia and give up on many things. I can understand the upset and the dread of it all, but somehow I’ve had to find a way of getting through that and still cracking on with my life. I’m still determined to live life to the full.
Doug Banks is a freelance IT consultant living with posterior cortical atrophy (PCA), a rare form of dementia that usually begins by affecting a person’s vision. For more information about dementia, visit www.alzheimersresearchuk.org