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One big psychological hit to having young onset dementia is a feeling of guilt.  

There is a psychological impact, because, as I say, often the person who’s diagnosed won’t anticipate that that’s going to be the diagnosis that they get. There's a stereotypical image that people have that dementia is just for the elderly. And then there’s the psychological impact of – if they’re a younger person – carrying on working, carrying on driving, carrying on living if you like, carrying on travelling. 

If we take each of those individual points for the moment, carrying on working is a problem, it’s also a problem for the carer, the other half, the spouse, because, or partner, because they often have got a career that they want to or need to maintain as well. And the demands placed upon them increasingly as a caring role has an impact upon their working pattern. Meaning in my case, and many other people I know who have dementia, that one is quite rapidly in many cases put out of the workforce, but the carer isn’t. And the carer needs to carry on working while still taking on an increasing caring role. So that’s another impact. And then consequent to that you feel guilty. It’s one big psychological hit to having young onset dementia: a feeling of guilt. Guilty that you’ve got this wretched disease, and all it presents to you.

Linked to that is obviously memory difficulties but also the ability to organise oneself, to even do things like cross the road. I find that very difficult now. And spatial awareness is quite difficult; it varies from day to day. I’m often bumping into people, I’m often knocking myself. I’m often needing to be restrained when I’m walking across the road because I haven’t seen the traffic coming, the brain hasn’t registered. So all those things may consequently have a big hit on your self esteem.

If you take for instance travel, I mean I am no longer able to travel on my own. So when I go to  London or when I go anywhere, I go with either Rosemary, a student supporter or a friend. That’s a big hit on your independence. I don’t mind it in one respect because it gives me  someone to talk to, and I like people’s company, but there are times when I’d like to travel on  my own, or have the right to be able to travel on my own. Because travel insurance now is such  that I can only get insurance if I’m with somebody. We’ve traveled extensively around the world  over the last 30 odd years, and now I feel that my ability to travel is much less. To the point now  where there are times when I think I won’t go on holiday again outside this country. And for someone who just a year or two months ago was thinking about going to Australia again, that’s a big knock to my self esteem, I guess.  

So it shouldn’t be underestimated, because physically I’m pretty well, and I’m active and I’m fit, and I do a bit of training each day and I’m mobile. Intellectually I’m – putting aside the challenges that dementia presents to me by way of recalling, memory, not being able to remember what I’ve read and what people have told me – but actually, fundamentally intellectually I’m potentially strong as I ever was. But there are frustrations around being able to  use that intellect, that’s the problem. And to be able to articulate myself without a script and without pre-thinking.  

An audio version of this blog can be accessed here: https://soundcloud.com/dementia-diaries/keith-2-nottingham-uni