Transcript - Listening to the Experts

Transcript of the Scottish Dementia Working Group (SDWG) film 'Listening to the Experts' about their experiences of living with dementia, which included discussion about their experiences of getting a diagnosis.

Listen to extracts from the film.

Transcript - Listening to the Experts - Diagnosis

James
Because things that were happening at home, I was becoming quite aggressive and having challenging behaviour, and all these things going wrong, I was more puzzled than worried as to what's happening to me. So I asked to see a neurologist and the doctor said there was a waiting list for about a year just to go and see them. So I went privately and saw one within a fortnight and then I got scanned. And all I got back from the report was hardening of the arteries and the brain, and it was normal for someone of my age, so don't worry about it.

Cathy
She said, 'I'll tell you what I'm going to have you tested'. I said tested I'm thinking of needles. I'm thinking about this lady from another hospital. I spent 4 hours with this lady and she asked me various questions and she showed me pictures. I felt stupid. It turned out after the 4 hours were through I was exhausted. She said 'Catherine I hate to tell you, but you have the beginning of Alzheimer's'. 'What?'

James
Then I eventually transferred to another psychiatrist and they told my wife I had dementia, they didn't tell me till later. Once my wife was told, things swung into place with Alzheimer Scotland, they were first in the door, in fact they were in the door before I even knew I had dementia. And I thought they were there to talk about my mother, 'cos my mother had Alzheimer's. So they went to the psychiatrist and they said I think you should tell this person he has dementia, so eventually the psychiatrist told me and it was like a thunderbolt being told that because I had an idea what dementia was, I've got the same idea now right enough, but to my mind that was somebody who had lost all sense of reasoning, they're wandering about, didn't know who they were or where they were, a bit incontinent and going about like a lost soul.

Lady in blue blouse
You go through the process, but there's something about the word Alzheimer's that brings you up short. It's almost as though somebody is saying, well you realise you're going to lose all those precious memories you have, of experiences of things you shared with friends, with relatives, seeing a child grow up and it's almost there that you begin to mourn for these things.

Doreen
When I was told, when I got the diagnosis, I was like, 'I'm not going to be able to do this, I'm not going to be able to pick myself up and get on with this', it was like a 3 month period, it was like a non-existence feeling.

Man in pink shirt
I remember when she told me I was really upset, and I told my family was well.

James
Getting a diagnosis had a big impact on my life most of it good, a couple of wee minor things, like giving up driving, 'cos that's something I feel every day, even now because I feel I should be driving. The biggest impact was first of all the family because of all the tensions built up in the house, my wife was ready to leave me because of my unreasonable behaviour. Well once she knew it wasn't just me becoming and old so and so, I had an illness, so that eased things a lot in the house. The family started to understand why I had been acting the way I did, and it became a lot better.

Cathy
I had one brother who said to me 'O Cathy I forget things you know'. I wanted to shake him They don't want to believe you have Alzheimer, that's the whole thing. So I just pushed them aside, OK one of these days you'll get the message.

Josie
I've got a great group of friends I must say, they really are, and they're all my age. At first when I was diagnosed, we're a funny lot we can have a laugh about it. They have a laugh about it because in the sense they go 'Och Josie we're the same. We go to the kitchen and canna remember what we're in for, because they're all home helps or something, so we can laugh about it. But at first it was terrible, 'don't tell her, she'll forget the date of the next meeting' and I did, but I'm going 'there she goes again' We get it as a joke and it works well for us, it works well for me.

Other man in pink shirt
It's not the end of the world. Most of my family and friends and such like know me very well, and they know they can take the mickey out of me and things like that 'What was the silly thing you did yesterday sort of thing' . Easy come, easy go

James
Having an illness can bring its own rewards, so I don't know when I was diagnosed with dementia, I think it might have been years before I was told, I know when I was told and my life has turned round since then. Before I was told I was sitting at home doing nothing, just sitting looking at a blank TV screen. I couldn't even be bothered switching it on. So being told was one of the best things of my life because things swung into place then and I could then start to deal with what I knew what the problem was. Horrible when you have a problem and you don't know what you're dealing with. Once you do know, you can start to deal with it, and I and others like me have managed to deal with it very successfully .

Cathy
My doctor phoned me a said 'Listen I have a friend and he has Alzheimer's, when you come in on Thursday, why don't you go and talk with him'. I said OK and this guy told me 'Look, handle it like you would if you had the flu I'll get rid of this thing. Eat good, exercise, and continue your life the way you always have and don't brood on it'. And I've taken that advice and I think it's helped me.

Scottish Dementia Working Group

The Scottish Dementia Working Group (SDWG) is an independent group run by people with dementia. The Working Group campaign to improve services for people with dementia and to improve attitudes towards people with dementia.

Visit the Scottish Dementia Working Group website for more information.

'Listening to the Experts' an Alzheimer Scotland Training Film

'Listening to the Experts' is an Alzheimer Scotland Training film for sale at £15.00. You can buy 'Listening to the Experts' from our online shop or contact us to order a copy.