James speaks on behalf of people with early onset dementia. He is a founder member of the Scottish Dementia Services Working Group, a member of Scottish Voices, the User and Carer Forum and the Service User and Carer Involvement Group (SUCIG).
Here he talks about the value of someone with his experience speaking directly to social work students. He emphasises the importance of being able to answer questions and explains how he uses slides to reinforce the messages he wants to give.
So you were telling me that you go up and give a 45 minute talk at the university?
Yes, at Jordanhill. It’s first year social work students and first year postgraduate social work students and again obviously I give plenty of time for questions and I take some help cards with me.
Can you tell me about the help cards?
I used to have trouble counting money in shops and trying to remember the names of objects, up to a point. Well, it’s very hard to explain that while you look like the average person on the street, there’s something wrong inside and they tend to get a wee bit anxious and worried. Are you a fly boy, are you coming it in some way that you can’t count money or you can’t pronounce words, so the help cards are a discrete way to let the sale assistants know you’ve got a problem without having to blurt it out and let everyone in the queue know your personal details. And again, I’m able to answer questions, no matter how searching. And during the talk, obviously, a lot of inflexion in my voice, expression in my face and my body language imparts quite a lot, apart from the words.
Have you changed your talk over the years as you’ve got used to the students? Are there things you’ve added?
I haven’t basically changed my talk. What I have changed is the slides that accompany it. I think it’s best if I just put my messages up. One of my messages is: Dementia doesn’t just happen to older people. It can happen to people in their 40s, 50s and 60s. I think saying that it might lose its impact, so it comes up as well. So they can read it and hopefully it goes in. So I have added quite a few more messages that I want to emphasise.
And then I’ve put in some photographs at the end of each page, just to break up the background, to make it more interesting. So I never think of it as a finished job, I’m always willing to add that wee bit more.
That might be quite a good hint for other people giving talks, actually, that thing about having the message there so it really drives it home as well. That’s a good idea.
We were talking earlier –you were saying about your body language and so on – you said that a video can’t answer questions and that’s the benefit of you being there in person.
That’s the idea because something I say might spark off something in them, especially if they’ve got a relative with dementia, so they’re able to ask questions and some of them seem very grateful, maybe I’ve confirmed something they knew or suspected or they’re glad that I’ve maybe said ways that you can deal with somebody with dementia because you’re always left wondering ‘did I do the right thing? Did I say the right thing?’ So I think the general feeling is that they appreciate it because you do bear your soul. Some of the things I say are quite hurtful, even to myself. You bear your soul.
So is there a way that, if somebody’s doing this for the first time that can help prepare them? Did you just start or did you practice?
What happened was, I had an excellent support worker. At that time I couldn’t work a computer so she got me to do small talks. She would type them out for me because I can’t remember. I need to read everything and she used to rehearse with me. When I went to the talk she would take me there and sit close enough to me to make my wife jealous! Then she started moving about a couple of yards away, then she went further back and now I can do the talk without her present. So I’ve really gained confidence but it was a wee build up so I think a lot of preparation and rehearsal, just like they do in SCLD. Before we give talks we always rehearse and that way we can iron out any potential problems.