The environment

We talked to people who recently received a diagnosis of dementia about the environment in which they received their diagnosis. People discussed their experiences of:

  • Getting the diagnosis on the phone on a video call
  • In-person appointments
  • Practical issues

Getting the diagnosis on the phone or video call

Some people we spoke to had been given their diagnosis over the phone or on a video call, sometimes due to COVID restrictions. Views are mixed on whether they felt this was appropriate.

A&B say that their doctor first brought up Alzheimer’s in a phone conversation. It was a big shock.

A: When we eventually got a referral to the memory clinic, we had a call from a Dr [NAME], who rang us up, I related to him the report from Spire from 2018, and we were chatting about it. He then suddenly introduces the word “Alzheimer’s” into the conversation, which frightened the life out of both of us…

B: [LAUGHS] It never…

A:  … and it was very poor practice, in my view, that he was making that statement and that decision over the phone, without private consultation and if they are going to introduce the word “Alzheimer’s” it shouldn’t be done over the phone without really any medical..

B: If I could…

A:  … evidence.

B:  … sorry, interrupting you both, but this is the bit that really gets me, and I have to get it off my chest every time. We were both sitting here, watching television and the phone rings, you know, and I’m thinking “Who is this wally?” [LAUGHS] I don’t know what he’s talking about, you know. And it suddenly it dawned on me when he mentioned the word… “I think you’ve got dementia,” it was that. Me?! Dementia?! [LAUGHS] You know, I just didn’t get it. And so the conversation went on but it was… he was… I felt he was selling me… I was… I was thinking and at one point in my head, this is some fake guy here, flogging something. That’s how disturbing it was, you know. But then I was thinking maybe and maybe not, but anyway, I just cried all evening, and I was crying because we were in such a state, and I… when I woke up the morning, and you’d gone out, I phoned him and I explained to him how awful I felt that it was to treat a person like that, there should have been, you know, more of a build up, or more of a… but it was… and he kept on and on and on about the tablets, you know.

Embed Print Transcript

DJ prefers face-to-face meetings but feels it was appropriate to discuss his wife’s dementia diagnosis over the phone as it meant that his wife was at home, in familiar surroundings.

INTERVIEWER: So, how did you find it having this conversation, and how did [she] it as well, over the phone?

It was fine, absolutely fine. I think I would have preferred myself to have done it face-to-face, but you know, I don’t think it would have gained in a great deal. I’m a person who likes to see people face-to-face, if I’m honest. But it was fine, you know, I don’t think it could have been improved on too much other than just the, you know, the interpersonal eye contact.

INTERVIEWER: So, I mean do you feel that this was the right environment to kind of have those conversations on the phone?

Sorry?

INTERVIEWER: I was saying do you feel… did you feel that it was the right kind of environment to have those conversations about dementia on the phone?

Yes, because I mean [she] was at home, she was with me, she’s in a place she knows and is comfortable with, and I think [she] was going to come round, I think was the original plan until COVID hit. So, I think being in the home is a good thing.

Embed Print Transcript

In-person appointments

Here, people describe the room in which the diagnosis was given. There was a mix in opinions with some saying they would prefer a more relaxed environment whereas others felt that a clinical atmosphere was appropriate given the medical nature of the meeting.

L&N describe the room where they got the diagnosis.

Well, it’s just clean, nice chairs, equipment all in front of her, the computer and everything. It wasn’t a cold room, you know, it was okay, it was a room. They’d… I think because there was three of us, we had to go in a bigger room, but down as you go in, and turn right, the consulting rooms are there, they’re like little cubicles, what they see… but I think we couldn’t all fit in there. So we went into probably an activity room, it was all right.

Embed Print Transcript

J&V felt the room where they had the diagnosis meeting was “cold and clinical”

No, I thought it was a bit cold and clinical, you know, I wasn’t that impressed to be quite honest.

Well, it’s just in a big empty room, what I was just saying that they just moved into this particular office block, this… they’d taken it over, the Surrey Social Services, because the original appointment was in part of [hospital], but they’ve moved out of there, and taken over this office place, so we was just gone into this big empty room, just sat there, when this chap came in, and was asking the questions, and then just came out with it, at the end “That’s the end of this interview, I’m sorry, it’s bad news for you.”

Embed Print Transcript

M&E say the environment was clinical and put them on edge. Covid restrictions made it even worse.

In fact that took away a little bit of the edge of sitting in this completely clinical, sterile almost environment, right. So, then the consultant…

INTERVIEWER: Can I… just before we move on to that, so you mentioned that you said it was a bit of an artificial environment, so what would you have liked differently? What would have helped you, do you feel, in that situation?

Well, I think it would have helped maybe if they… first of all you see, the way the reception also is situated, of course they had to be sort of caged, you know, with the perspex and all of that, but there’s a big printer over here, so when you go in, the secretaries, or the receptionist’s right over there in a corner, you only see the head, as it is, so you are only hearing this voice. I would have preferred the person to stand up, you know, you buzz the buzzer, and they let you in, and they say “Come in,” and they have to stand about a mile away from you, I understand that, you know. So, that’s all very… you know, but I would have preferred stand up and just say, you know, “I’m sorry it has to be like this, but you know…” and just some kind of… we all know it has to be like that, we know we’re in COVID, but I think just saying something like, you know, “Normally it wouldn’t be like this, and, you know, I’m sorry it has to like this,” and you know, I think it helps, actually. Because we’ve done that, you know in a church situation, when we… or any other situation when we’ve got to, in COVID, had to receive somebody and then you can’t actually, you know, go close and all that, say “Look, I’m really sorry it has to be like this, I have to masked,” people know it but I think just for… yeah…

Embed Print Transcript

Practicalities

Some people talked about the practical side of getting to in-person appointments, particularly parking.

P&M: Pay-by-phone parking at the hospital was very time-consuming

The worst thing about going there actually from my point of view was that there isn’t really any parking at the hospital and it’s all controlled parking and I remember it took ages getting through the [LOCAL COUNCIL]’s pay-by-phone parking system.

Embed Print Transcript

C&J The venue was hard to find but “ridiculously peaceful” and parking was easily available.

Well, actually it was ridiculously peaceful and quiet down there at that place [LAUGHS] once you found it, it’s kind of hidden, bad signing and all that, easy parking though, once you worked out where you could go and where you could park. There was just nothing to hassle you or worry you, I suppose that’s the best summary.

Embed Print Transcript

M&T Each session is at a different location which can be a “hassle” without a car.

Well, the items I mentioned, the right age, experience, very relaxed, another factor too, of course, is each session we had it’s been at a different clinic, and sometimes… and particularly without a car, it’s quite a hassle…

INTERVIEWER: Difficult, yeah.

So, it’s so convenient to get to [PLACE], we jump on the bus, the [PLACE] bus took us almost to the door of the hotel in [PLACE] So, the venue was good to start with.

Embed Print Transcript

Sitting close to the person

People said it was important for the clinician to sit sufficiently close to them so they did not have to shout. This approach helped them to feel that their discussions were confidential and could not be overheard by others.

C&T explain that sitting far apart “didn’t help”

C: Yeah, yeah, where you’re from? And, you know, you know, “Oh, innit horrible day today,” and you know, just general chit chat before she actually sat down and we started…

T: It didn’t help that we all had to sit so far apart, and she was all masked and gowned up…

C: We was masked and…

T: … because it was COVID.

C: … you know, we were sweating, weren’t we, and she was sweating, because it was hot in there, and oh God!

RESEARCHER:Not the most comfortable of environments.

Do you think… would you have changed anything about the environment for you?

C: Yeah, I think they… when people get diagnosed with things like that, I think they should make it a happy place, like bright colours and… so you’re not… it’s not drab, so when you get that… but then it’s the diagnosis anywhere, isn’t it? You get a bad diagnosis, you want it… oh, I don’t know, I’ve never really thought about it. Don’t know. I think it could be warmer, like a warmer place…

Embed Print Transcript

Personal attributes of the consultant

Here people talk about their recent experience of a dementia diagnosis and the impact the health professionals’ personal qualities had on how they felt when...