Taking time to understand the person to better judge reactions

People with recent experience of a dementia diagnosis talked to us about what steps health professionals can take, to best judge how to deliver the news. They said the following was important:

  • Get to know a little bit about the person, to help you to decide the best approach to giving the news.
  • Balance the amount of small talk, to avoid trivialising the meeting.
  • Be mindful of impact of their identity/protected characteristics on the meeting.

Get to know them a little

People who have recently had a diagnosis of dementia talked about the value of doctors finding out a bit about the patient before giving the news of a dementia diagnosis. They suggested that this could help the doctor judge how to give the news in way that wouldn’t scare them.

A&B A man whose wife has dementia advises doctors to arrange a face-to-face consultation as it makes it easier to judge how to deliver the news.

Don’t mention anything on the phone if you think it’s serious enough to get people… get them in on a face-to-face consultation and assess the ability of the patient what news they can accept and process, and if it’s tricky, then obviously to find a way of delivering that, because the patient needs to know, but delivering it in a way that is not going to frighten the shit out of them, basically, particularly in some of these areas where certain names in the disease area, one of them being Alzheimer’s, is like a word that people fear.

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DJ appreciated that the doctor spoke to him first to gain a better understanding of how his partner may react to a diagnosis of dementia and the best approaches for delivering this news.

Yes, she was very understanding, she wasn’t… I think she gave the diagnosis in a very gentle… a gentle way, not in a sort of… I think she was very aware of how people might have felt receiving such news. So, you know it was kind of a gentle thing, she didn’t give it to [she], she gave it to me, which I think helped, and yeah… whether or not you say that to the person, “You’ve got dementia” or not, she couldn’t tell me, because she said some people… some people just accept it and get on with life, some people get very upset about it, and I think [she] gets very upset about it, and I said to her, “Should I tell her she has dementia?” and she said “Well, that’s up to you really, because it’s… different people take it different ways, but also she might… you can tell her one day and she’ll forget another day,” and that’s very true, she has, she forgets, and now and again we have a conversation that she has it, and it’s very… she gets very upset and tearful, but then half a day later she’s forgotten about it, you know.

So, I think it was good that she spoke to me about it rather than the pair of us. And the [doctor] was the one who spoke to both of us about it.

Those who had a professional background in health feel that the doctor should pitch their explanation of the diagnosis to their level of knowledge.

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Those who had a professional background in health feel that the doctor should pitch their explanation of the diagnosis to their level of knowledge.

M&E When explaining her partner’s diagnosis, a woman feels that the doctor could have considered that they both have a medical knowledge from their work.

She said that, and then said there are changes in the brain, and all of that. I think she could say “On the CT scan we’ve seen that there are some changes in the frontal lobe, you know, and which is why you’ve been having these memory problems,” and then come out with the actual name and diagnosis, as you’ve kind of explained it…

INTERVIEWER: Yeah, and it also sounds like there was maybe not an acknowledgement of both of your expertise either, that she could use bigger words, frontal temperal…

Yeah, yeah, exactly, and she knew all of that, she asked me what my background is, so it’s not like, you know, we just came in off the street and so I don’t know you have to start off at the very, very basic level, you know. So, she knew, you know, and I thought she could have just exploited that really.

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By taking an interest, a doctor can show the person that they care.

C&T say that the doctor’s interest in them personally made them feel cared for.

T: They was interested. It wasn’t like you went in, and they said this, that, this, this… they wanted personal information and it was like you was talking to someone that you knew. It wasn’t like you just went in cold, weren’t it?

C: Yeah, they…

T: It seemed like they really cared. First thing they said, or like told you their first names, so you called them by their first name…

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Balance the amount of small talk, to avoid trivialising the meeting

While people appreciate the doctor showing an interest in their lives, it is important not to spend too long on this part of the meeting. P&M explained that they were impatient to find out what news the doctor had for them.

P&M appreciated that the doctor was trying to make them comfortable but feel that the small talk went on for too long.

P: Yes. And anyhow, so well, we knew… we had just the MRI scan, and we thought we were going there to see what the results of the MRI scan were. And I suppose we both – [M] and I – suffer from a degree of impatience, and we were… the conversation started off, I don’t remember it in detail, but it started off very politely with generalisations and obviously we were being made comfortable, which was fine, and so on, but as this went on for what seemed to me to be quite some time, I was getting rather impatient, I thought to myself “We’re here to see what the result of the MRI scan is, they’re beating around the bush before getting to the point,” I’ve no doubt that’s what they’ve been trained to do and so on, but both [M] and I know that we’re here to get the results of an MRI scan, and, you know, let’s get to the point. And because of the way they were beating about the bush, I knew it wasn’t going to be good news, because if it had been good news, it would have been… come out in…

M: Come out straight away.

P:  … the first two or three minutes, you know. If you can tell someone “You haven’t got cancer,” you tell them shortly after saying “Good morning…”

INTERVIEWER: Yeah, yeah, sure.

P: … and if you’re going to break it to them gently, then you go through all these procedures. So, anyhow they got round to it, and then eventually used the dreaded word “Alzheimer’s” and so on, and over to you, [FEMALE].

M: Well, it was dismaying, you know, to say the least, you know, what can you do? What can you say? I don’t remember much more about it, except being dismayed.

 

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Consider people’s identity and protected characteristics.

Some described the importance of being mindful of how the meeting may be impacted based on their identity/protected characteristics. For instance, one participant with younger on-set dementia felt the quality of their diagnosis meeting was negatively impacted by their age.

AcH The friend of a woman diagnosed with dementia felt there wasn’t enough information about dementia in younger people.

FEMALE 2: There’s no information on your age, like they gave her no information, apart from elderly information. I don’t know if it’s actually any different, age of the brain, like technically on what we learn, but personally, if you’re going to sit there and talk to her… they could have talked to her a bit more about the whole thing I think. I don’t know if they know as much as they do in a younger brain, I don’t know. They kind of just thought “Oh!” it just seems from that person, they thought “Oh God! I don’t actually know where I’m going to go with this, let’s just…”

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Others were pleasantly surprised that they didn’t face any issues in relation to their identity.

M&T “half expected” resistance but felt that their sexuality was not a factor in how they have been treated during the dementia diagnosis journey.

I just wondered whether you felt that your experiences going through this whole process were impacted, or influenced in any way, whether positively or negatively because you’re two men living together? Do you think it had any impact?
M: No, no, no. I say you half expect a bit of resistance on that side, but no, no they all accepted very easily, and when I talk about my partner, if I ring… when I’ve had to ring them a couple of times about something, and I said “My partner is not feeling too good,” or, you know, no, no, there’s…
T: It’s only on medical stuff now, isn’t it?
M: Pardon?
T: Are you talking about medical stuff?
M: No, no, no, generally.
T: No, yeah.
M: And they don’t show any, you know, discomfort when they find we’re two gay men in our eighties, living together. That doesn’t seem to worry them.

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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...