Taken from a blog I wrote for and shared with the younger people with Dementia website
Ken C on driving
I must point out that we are all so very different, and no two people think of driving problems in the same way, so I am not speaking out on behalf of others, this is simply my point of view.
To drive or not to drive...I gave up driving in 2003 when the illness started, while I was still working. I decided in my own mind, and it never really bothered me.
A year later, I had to be re-diagnosed because the original hospital had lost my notes. I was given advice about living well with young onset dementia with Lewy bodies, and was also given medication, which in all honesty I did not expect to work. After around 18 months I realised that I was, or seemed more, switched on in some ways than the vast numbers of motorists driving in our area of the UK, so I took the bull by the horns and re-applied to get my driving licence back.
Driving again...for nowI agreed with my wife that I would never drive unless I felt up to it, and if I ever felt odd or unwell, I would stop the car when it was safe and get out. I have driven by myself on occasions but only short distances, and I did this so that I felt comfortable if an emergency arose at home. I knew one person with dementia who kept driving, even though someone had to sit next to them, and tell them which corner to drive around, something which shocked me. I am more concerned about hitting or killing someone else than I am about me being able to drive, and this has still stuck in my mind.
Yes - I have my licence back but only on a yearly basis, and if it goes, well so what? It’s not the end of the world, as I have had all of the years extra through the medication, and that means more to me than anything else, especially seeing my grandchildren grow up.
I know that some areas of the UK have driving courses where people with the illness can go for an assessment, to see if they are competent to drive, and that to me is a brilliant idea. As long as the person listens to what is said by the instructor, and agrees to give up if they are classed as unsafe. Perhaps everyone should have a driving assessment these days, dementia or not.
It’s now time to re-apply for my licence again, so it’s a case of wait and see whether I am allowed to drive again after Christmas, or whether it’s back to the poor man’s taxi 'The Local Bus,' but if it comes to that, well so be it.
2015 - an update from KenAlthough I am still officially allowed to drive at present, the hospital fouled up my application and did not send it back at the given time, so officially I do not have a valid licence as it expired on the 5th January. We only found this out when my wife contacted the DVLA to see what was happening.
It also appears that there is a 9 week waiting list, so I am not holding my breath just in case it is denied.
However the DVLA told my wife, that I can still drive providing the doctor agreed. My wife was told by the consultants secretary that she had no objection to me driving, but as far as that is concerned, it was not followed up in writing, so I am very uncertain about driving. I feel that the consultant has a duty to respond to this in writing, to make it official.
These days I do not drive very much anyway, so if my licence does not get renewed, it's not the end of the world. I still enjoy driving on the odd days I feel up for it, but I know that time is running out, and eventually I will have to stop. But I think it's down to thinking of other road users and not just myself.
Many people find it hard to give up driving because they have been driving for so long. I started driving in 1968, and it's up to me to stop, when I know I am no longer safe to drive.
- Ken Clasper was diagnosed with young onset dementia with Lewy bodies in his mid-50s. He has taken part in clinical research and continues to give talks about dementia.
He also writes a regular blog Living well with Lewy Body dementia.