RESEARCHER: So, you said that she… you came out not alarmed or not frightened, I mean what was it that she did then that kind of helped to sort of ease you in that way, or not make it so frightening or so alarming?
A: How did she do that? I think just… it was a kindness, I think, you know, you know what you got and whatever, and what… but it was still… “We can give you tablets to kind of calm you down,” or whatever. And when it went up, and I was all over the place, and they said cut it down, I was back to normal, as far as I was concerned, you know. And she was just…
S: She was understanding…
A: Yeah, just kind.
S:… and I think she just explained it through, you know, what dementia was, how it would affect us, different stages, we were in the early stage, and if we could take the medication how it could hold it back for, you know, a certain amount of time, nobody knew how long, and nobody knows how long you’re going to be like in stage 1 and stage 2. So, it didn’t all seem like if it was going to happen…
A: Tomorrow.
S: Yeah.
A: You know, like wooosh! You know, suddenly you’re…

P:Well, perhaps a little bit more information based on their experience of other cases, if they could have said… well, you know, obviously they can’t discuss names or anything, but if they say that they’ve known cases where it’s been not a big problem for ten years, if they’d said that and if they said and in other cases it could get bad after six months, if they’d actually said something like that, which I don’t think they did, it probably wouldn’t have taken us much further forward, but it would have…

M: Qualified it a bit.

P:… qualified it a bit, and we would have come away with more hope. We came away, really, okay it was early onset, but we weren’t really very much clearer as to what the average timetable was, which would have been helpful.

But this lady, girl, girl was particularly helpful, and she spent a good two hours with us, going through what she thinks we can do to live with dementia, and she said “I’m going to send you a summary of our discussion,” but she did that within a week, she sent the summary. And she was discussing various groups, self-help groups, and various activities she thought could be useful. She talked about finances, that if we get in trouble we can apply for some financial assistance, which apparently is very difficult to get, but we can make applications, if we get. And she recommended various groups, one or two of them I’ve been talking about, and we want to try and have in the next couple of weeks. Is there anything else she talked about, good diet, a bit of exercise, mixing with people as much as you can, and all the things I think we knew, but it was good to hear from somebody.

INTERVIEWER: So, how did you come out of that meeting then

Oh, much more confident, we felt much more confident to cope with things. I mean her recommendations about the groups, because she talked about the groups in depth, she said “You know, you’re going to learn from other people with your problem,” and looking at me, she said “You’re going to meet other carers who have had a lot more experience than you,” which I agreed. So, all those very positive things, we left feeling you know, very impressive.

Well, it was just kind of level terms wasn’t it, was our… you know, nothing big words or anything, you know. And she said “I won’t be seeing you again, but, you know, the centre’s here [dementia centre employee]’s here.” [dementia centre employee] wasn’t in the room with us, it was just the three of us, and then when we came out, she came and said goodbye and then Jackie had a cup of tea ready for us, and cake and that.

INTERVIEWER: Okay, so something immediately after, after…

Yeah, yeah, we sat down, had a nice chat and then we left, and I felt absolutely wonderful when I left. Didn’t I? I said to [DAUGHTER], “Do you know what, I feel a whole weight’s come off of my shoulders, it was their positivity, their…” and I’ve rang [dementia centre employee] a couple of times, and she’s always got back to me.

For some, news of the diagnosis came without any assurance about ongoing support.

If somebody… with the right kind of background, medical or nursing background could paint a picture which wasn’t quite totally bleak and  you could emphasise that were changing very rapidly, and there’s lot of research going on, and there is medication to help, “We are going to follow you though, you know, and there’ll be lots of opportunities to develop, we’re going to give you lots of advice about living a fairly healthy life,”

M: But you reminded me, you know, and I’ve chosen to forget it, that maybe in normal times, we would have seen a doctor in the early days, you know. I appreciate myself now there’s not much… have any magic answers, but it would have given that little bit of extra confidence I think if we’d seen him in the early days, just seen a doctor for a very short period.

RESEARCHER: When you say “extra confidence”, what do you mean? Can you just elaborate on that a bit.

M: Well, if we heard from him, in medical terms, you know, he’ll tell us what we’re talking about, “Well, part of your brain’s been damaged, there’s not a great deal we can do, we can never repair it fully, but we have got medication which helps, and we’re going to start medication now, and we’ll keep on a check on you,” that kind of approach I think, that would have been good coming from a doctor, I think.

This was a slight reservation I would say I had about it, that the consultant, the man who was actually making the decisions, we never actually saw, it was always this lady, we dealt with this lady, she referred it to him, got a view, came back to us with what the view was. Now that I found, you know, the consultants in charge probably have, you know, scores or even hundreds of cases to deal with, so he was no doubt working as efficiently as he could, but nevertheless I would say it would have been nice to have had one meeting at some point in the process, with the actual boss man.