A year ago, Christina Macdonald spoke to former head teacher Keith Oliver about his experience of being diagnosed with Alzheimer’s, aged just 54. While his life had changed dramatically since his diagnosis in 2010, Keith remained optimistic, living as independently as possible. Here, Christina catches up with him again, and discovers that as well as still harnessing his inherent positivity to overcome the challenges he faces, he has also written a book…
Last time we spoke, you were pretty positive. Are you still able to maintain this mindset?
Very much so. I think I am fundamentally a positive person, and while there have been challenges along the way – and there continue to be challenges – I draw a lot from that positivity.
A year ago, you were walking on a regular basis, to help your mood and energy levels. Are you still doing that?
That’s been maintained. I still walk quite a bit and linked to that, I’ve just published a new book, Walk The Walk, Talk The Talk.
Was writing the book therapeutic for you?
Very much so. I didn’t want it to be solely a book about dementia; I wanted it to be a book about me, the person, and I think that’s been achieved. I drew in about 70 friends who wrote contributions, partly about their friendship with me and partly about their thoughts on my personality, and that enriched the book and my writing of it. Writing a book on your own can be quite a lonely experience and that’s something I don’t feel at all comfortable with, so to have 70 people contribute was a positive thing for me. It kept me motivated as well.
What do you hope people will take from the book?
It depends who the reader is, really. People talk about person-centred care, and as a writer I try to make my work person centred, too, so that it works for whoever is reading. If it’s a professional, then I hope it reinforces the notion they should always see the person before they see the condition. With older people who have dementia, it’s easy for them to be seen as an older person who needs help and support, but if those working in the industry could try to tap into what makes that person tick, then it could make a real difference. Secondly, to show the reader it’s not just dementia that causes changes and challenges; everybody goes through changes and challenges in their life, and the dementia is part and parcel of that. Yes, dementia is horrible and it does present enormous challenges, but there are also opportunities within it. For me, it has given me this opportunity to help support the movement towards greater awareness around dementia and to reduce the stigma
Are there any misconceptions surrounding dementia you have come across, in terms of how you are treated?
Most definitely. I certainly present a challenge to people in their perception of what dementia is or what someone with dementia is like, because I am young, fairly intelligent and fairly able to express myself – not as well as I used to be able to and I am very much affected by it, but I’m not a stereotypical person with dementia.
What would you like to say to overcome these misconceptions?
I think there’s a lot of fear around dementia and a lot of misreported information about it. Dementia, like all conditions, has a broad spectrum and affects people differently at different times. Sometimes I am not good and I find life very challenging. But there are also times when I can draw upon my positivity and draw upon my support network.
Last time we spoke, you were keeping lots of notes and writing a diary. Does that enable you to function pretty well on a daily basis?
It does, provided I can remember where I’ve written it and where I’ve put it. Each time I meet a barrier to the strategies I’m using, I try to think of another way of surmounting it. So the note-taking, for instance, I now index them and keep a record of all the meetings I go to and all the conversations I have, so I have a better chance of finding them. That’s my coping strategy.
What’s your advice for anyone newly diagnosed?
First, I’d say to live each day as it comes, but plan something pleasant for the near future, so there’s something to look forward to. And also, to be proactive in seeking out what support is available out there, by way of professional help as well as family and friends. There is often more support out there than one realises, it’s just a case of finding and accessing it.