Closing out the meeting with discussion of medication and next steps

We talked to people about their recent experiences of getting a dementia diagnosis and how they felt about discussions at the close of their meeting. They discussed their preference for talking about:

  • Medications for dementia.
  • Advice about talking to others about their diagnosis.
  • Information about support services.

M&J: He would have liked a tick list of what to do next for his mum who had just been diagnosed with dementia.

We just got the score done, you know, like and we got the appointments to do other things, and we had contact numbers, and the communication was quite, you know, like regarding the clinical diagnosis was quite good, maybe it’s not quite so much information on what we needed to do next. I needed a ticky list that I could work through to tell you right, I’ve got to do this next, and that next, and the other next, and they didn’t quite get that, it was almost sort of like a passing comment at the end, after everything was done, like well, you need to do this, that and the other, verbally, and then I get back, and I’m thinking “What the hell was I supposed to do again?”

Interviewer: So, actually maybe having some written information about…

Yeah, yeah, just sort of like “Right, this is what you need to do next,” you know, like, I need that from everybody, because my memory is shot to… I’m probably heading down the Alzheimer’s route myself, you know, like I’ve got a terrible memory, but then I always did have.

 

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Medications for dementia

People who were recently diagnosed with dementia, and their loved ones, told us they welcomed discussions with consultants about any medicine that was available for their dementia and how these may influence their abilities to live well with the condition.

C&T Her consultant explained that the tablets wouldn’t cure her, but could help slow the progression of the disease.

T: And I’ll probably see the consultant, this Richard, every now and then, especially because I’m on the tablets. But as he said, you know, there is just nothing they can do, there’s no cure…

RESEARCHER: So, they were quite honest about that, then?

T: Yeah.

C: Yeah, they didn’t give you any false hope, did they?

T: No, no. Well, I mean you… I know there’s no cure, and most people surely must know there’s no cure for that, apart from this tablet…

C: Which slows it down.

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Advice about talking to others about their diagnosis

People said that that advice on disclosing their diagnosis to other family members and friends to increase their informal support networks would be useful.

ACH Would have liked someone to describe the diagnosis in layman’s terms so that they could explain it to their family easily.

FEMALE 2: No support in that way of any information whatsoever, personally, for me, even us Googling it, just to find…

RESEARCHER: So, what sort of information would you like?

FEMALE 2: I think even for… I don’t know but like for her family, like to digest the actual realisation of it all, in layman’s terms and where we can understand and things like that, you don’t get any of that, none of that support, no… even to dumb it down to general talk about most like… because dementia is oh, yeah, you just get what you get from the media and everything like that, I don’t think there’s enough information for any person to understand it properly, in a normal, without being technical.

RESEARCHER: Yeah, an easy to understand language.

FEMALE 2: Yeah, basically, like the way I learnt it was someone had given me a picture of the seasons and that was someone’s brain, and just simple like that, but I don’t think you get enough information for everyone to get it.

RESEARCHER: So, would that have been useful to have the information relayed in that way during the diagnosis meeting?

FEMALE: Yes, something like that, yeah.

FEMALE 2: Because even you have to tell your family, no support telling her children, and that’s a big thing, I think personally, but there’s was no nothing, you have to figure that out yourself, no one telling you “This might be a good way of doing it”. I think that needs more…

FEMALE:Yeah, because my daughter has counselling at school.

FEMALE 2: Yeah, just… I don’t know, just a little bit more support, and understanding of the greater picture I suppose, in a way… well, I wouldn’t say a thick person, but a normal person’s, you know… it’s like even the word… the name of the medication is always massively long isn’t it? Who even says that? Little things like that, I think has been the hardest, especially for like us, like carers, we kind of know, which is probably even worse for you, you know what’s coming, but they don’t, because no one gets told anything about it I think, I think that’s quite hard.

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Information about support services

Many people talked about the information they were given about where they might go for support services. This was particularly the case for people with younger on-set dementia who were offered little in the way of suitable options.

M&T felt confident after hearing about the support services that were available to them.

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.

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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:...