I thought she was very good and very knowledgeable, and she had come to do the first assessment, and then from there, once she’d done her first assessment, which she said she’s definitely, you know, got Alzheimer’s or dementia, she said she had to stop driving, and she would need… she said “You’ve probably got to maybe eight years if you’re lucky, maybe ten, before she’ll need to go into a care home.” So, she could see, she could see straight away really.
..

Well, actually she told me that she’d been a dementia nurse for 50 years, and it was just things that she… I can’t remember exactly but she had said things to me which I thought clearly this woman knows what she’s talking about, you know, and she was very confident in what she was telling me. And she said herself, you know, “I’ve seen hundreds of these cases,” and I guess if you’ve seen hundreds of those cases then it allows her to say what she can say, you know, it’s called experience isn’t it?

….
He was gentle, but, you know, the facts were in there, and he didn’t think it was Alzheimer’s, he was pretty sure it was dementia, and that he was going to get us this scan for it, which he subsequently did, and he pushed hard for it too. Yeah, so he did use the terminology, he didn’t tell us how long we might have, I did tell him [NURSE] had said that, and I don’t think he was very pleased about that. You know, I know the NHS when you have bad news, the NHS like to drip-feed, don’t they?

INTERVIEWER: Yeah. [LAUGHS]

So, yeah, no, he, he used those words and those… the technical words and about how life was going to be different, I think, and he explained that to both of us, and [she] was fine with it.

… I felt they… it made me feel as if they cared, and that they wanted to do the best for me, although it was very obvious there was nothing that technically really can be done, other than making things a bit more comfortable, or maybe just delaying things.

Yeah, I think I can remember thinking that, yeah, she gave the impression that it was a possibility it wasn’t going to be dementia, I think she did say, when she told us that we’d got, you know, what I’m…
RESEARCHER: MCI. MCI is the…
S: What do you call it?
RESEARCHER: M.C.I is the…
S: MCI.
RESEARCHER: … Mild Cognitive Impairment, yeah.
S: Let’s call it that. When she said you’ve got MCI and I said “Oh, that’s good, does that mean he hasn’t got dementia?”… Oh, that’s right then she gave you that horrible book.
RESEARCHER: Oh, right okay.
S: That blue book… have you’ve forgotten?
A: Yeah.
S: Oh! She sent it through the… came through the post, oh, awful, about six pages and you read it, nearly every other page mentioned dementia, and we were then sort of deluding ourselves that we hadn’t got dementia, we’d only got MCI, so life wasn’t so bad. But then when you read this book, it was pretty obvious that you were going to…
A: You’re going to have it.
S: … end up, end up with it. It wasn’t a good… I mean I must admit I can’t criticise the system apart from the lady, that book is not a good leaflet to send to people when you’re in lockdown, because that’s our first information…
RESEARCHER: About it, yeah.
S: … and it was, I mean I read it and I didn’t feel too alarmed, then [A] read it, and he was in such a state.

So, he got a phone call, and when he answered the phone… when I heard, because he puts it on speaker phone for me to hear, I was upstairs and she said “Hello, [Consultant’s name] here, from the memory clinic, [E] I thought “I know. I know.” She said “I’d like you to come in.” So, she called, say on a Monday, and she said “I’d like you to come in to clinic on Thursday,” like it was, you know, just quick. And I knew immediately, they don’t call you in to tell you there’s nothing wrong, you would just get your follow up appointment “We didn’t find anything.” So, when we went in – this is the part – we went in, and we sat down, she… yeah… well, she, she hadn’t… she sent us in the room… she came to meet us in clinic, she sent us in the room, and she said “I’ll be a minute, just sit down,” and she took a minute or two to come in, then she came in, she sat down, and she said “I’ll cut to the chase…”

INTERVIEWER: Okay.

“… it’s not good…” that is exactly how she opened up, but she said hello to us in clinic, obviously, when she took us in, but she said “I’ll come back and…” “I’ll cut to the chase, it’s not good news, you have a very rare form of dementia, and it’s going to affect speech and language,” in that sentence, that is how it was delivered. And I was looking at [E] over masks, we’re still over there, and I was looking at him and his face is just glazed over, and I knew at that point his world has just fallen apart. And so I took over questioning because you know, I just went into, like Okay, so when… speech and language, how? How is it going to affect? What will happen? this, that and the other, all those types of questions, right? And then she said “It’s very onset,” as if she knew my mind, or what I was thinking, she said “And there was nothing you could have done about it, because it would have probably started coming on about 50,” she said, about age 50, very early onset. She said “You have the very rarest form, which is speech and language, which is semantic dementia,” and she said “But it’s not the end of the world,” she said “We can put processes in place,”

He didn’t, he didn’t… he didn’t cover it all up with flowery words, and technical jargon, you know, he used the words that we understood, you know, we knew the dementia, we knew Alzheimer’s, and you know all those basic medical terms, but he didn’t try to bamboozle us with stuff we don’t need to know, really.

Straight away we said “Do you think we could, you know, hear more,” and she said “Oh yes, you will receive a written thing,” you see, which was fine, I didn’t care two hoots then that I hadn’t got any, I was quite happy just to go… well, I’m happy to know I’ve got it, but I knew I was going to read more medically about it, which would be interesting, what I was particularly weak at, or you know, all that sort of stuff. And she said “You should get it in about two weeks,” and that was okay, but then it came and it was incomprehensible, so that’s when we started asking can we hear what it all means.

L: Just going through the scan slowly, and said we can go and do more scans if you want to, it’s up to you know. She was doing it with her finger, and just pause, wait till we made, you know… any answers or any questions, she’ll pause and wait. “We followed that up, [N] was there anything?” and we said “No, we’re fine, we’re taking it all in.” It was… it was just clear, precise, positive and we could…

N: Well, they’re never in a hurry basically, which is a different… you know. Where other people are…

L: Well, it was just kind of level terms wasn’t it, was our… you know, nothing big words or anything, you know.

I thought myself afterwards, that I’d like to have asked her again about the brain scan, you know, could she explain to me would a brain scan show the deterioration which has taken place, or not, and I don’t know why I didn’t do that. I just forgot. And I’m sure she’s had the medical knowledge, because she’s been asked by other people, but I should have asked that question.

…

if from the very beginning, somebody could sit down with you and talk through the whole process, you know, “Let me tell you something about dementia. Let me tell you what’s happened to you. Why it’s happened. Look at this picture of your brain, this part of your brain has been affected now, and that’s been damaged a little bit now. Now we have available but they’re limited…” that kind of talk at the beginning, I think could have been very helpful, you know. Just taking us back to the very session, when the nurse did the first assessment…

FEMALE: It wasn’t very good, I don’t think. I just think, you know, it was okay for me, I have a family, you know, and I was thinking of all the other people that didn’t have that, you know, they were just sent home with nothing.
…
FEMALE: Well, she didn’t, you know, sit us down, or you know, say anything, or, you know, just… I know it was late in the evening, but it was just the way that they, you know, told me, I suppose. I just… I was so shocked, I think I spent the whole evening crying. Yeah.
….
FEMALE: Well, I thought they could have just sat us down, and explained it to myself and my sister. We didn’t get any of that. She said “Go home and digest it”.

I felt they… it made me feel as if they cared, and that they wanted to do the best for me, although it was very obvious there was nothing that technically really can be done, other than making things a bit more comfortable, or maybe just delaying things. You know, so I tend to, myself, block it all out, and kind of focus on what has to be done now. If you stop and think about what the long-term game is, it gets very tearful and you know it’s not pretty to think about it, really, so I tend not to… I tend not to spend too much time thinking about that, because I don’t feel there’s any benefit to it, you know. The plans that we have going forwards, and [doctor] and the nurse have both been very helpful when I phoned them, because they said “Phone me…” the… [doctor] didn’t, but the nurse says “Phone me any time you want to to ask any questions,” and that was really helpful, and I think she put me on to a couple of agencies, which also helped. And [doctor] recommended a book that I should read about it, which I did, and that made a massive difference.

She was talking about various things connected with dementia and it was obvious that she knew quite a lot, and she was talking about him, it rung very true what she was talking about. Very relaxed, gave us lots of opportunities to ask questions, no pressure at all. And when she said “I’m going to send you a summary of all we’ve discussed” I thought “Oh, never going to see that.” But anyway within a week, there was a three-page summary of all the things we discussed.

Then he just said “Well, I’m afraid I don’t know anything about this form of dementia, I’m going to have to go away and research it, so that’ll take me three or four months to do that. So, I’ll write to you when I’ve done it.” And that was it, really.

Interviewer: And what about the way he kind of left the meeting, or saying, you know, “I’ll go away for three or four months,” what are your thoughts about that?

Well, I just went “Phhhorr!” you know, it was just… I think I felt frustrated maybe, and, you know, we still haven’t heard from him, it’s March now, and we still haven’t heard from him, and you know, it’s almost as if, “Well, there’s not really much we can do about this, so I won’t rush,” kind of thing. He said to me “Oh well, she won’t change that much between now and March, so that’s all right then,” [LAUGHS] which is not really what you want to hear is it?

M&E’s consultant lacked expertise on rare types of dementia but didn’t explain this to them at the time of the diagnosis.

Interviewer: why do you think that you didn’t get offered an explanation about the subtypes or anything like that? Is there a…

Because she doesn’t know; it’s come out, it’s transpired now that they’re not experts, she is an old age… what do they call them? She’s an old age… when she signs off… Old Age Psychiatry, that is her signatory. So, and I’ve actually subtly said to her “Do you think, doctor…” because you never tell… one thing you never say to a doctor, “I think it’s best if we do x, or some doctor… the other doctor has said to do y” it’s a no no, you have to gently sort of manage it sideways, by saying “Doctor, you know, do you think it might be a good idea if we do this?” and then they soften, you see. So, and I know that for a fact, because our clinicians used to be like that, it’s a pride issue, you don’t want to be told that someone’s, you know.

But anyway, so I was then… so then [support worker]sent me the fact sheet about semantic dementia, and all the five subtypes and so then I read and all the symptoms, he’s a text book case, you know.

So, she could have said “Look, you know, I’m not an expert in this rare dementias,” she could have said, “And that maybe I need to read around…” and I’ve had consultants say that to me, “Maybe I need to read around the subject,” you know, my osteopath said “I don’t really know, and I will need to read, or I need to ask, or need to find out, and then, you know, I’ll find out and I can come back to you and give you some more information. But in the meantime,” she could have said, “Please do, you know, avail yourself of all the information,” because they’re talking to each other, the psychologist, who’s seeing [E] and she will know that she’s sent the fact sheets, you know, “To please look at that, and try to get, you know, support or information from these specialist, you know, support groups,” Age UK, Care Dementia, there’s one called… there’s, you know, and even she would know about the [University name]… she should do.