Living with dementia and memory problems

Can you tell me about what you did at the memory clinic; did they do any tests or assessments?

Tony: I can’t remember anything about it; Which is appropriate, I suppose [laughs].

Yeah, yeah, that’s absolutely fine. Sometimes they do like a clock face, you have to put a, a clo, things.

Tony: I remember something about a clock but it’s very vague.

Moira: He had to answer all sorts of questions.

Tony: Very vague, and a lot of questions that seemed, well I, I didn’t understand really, a bit, if you don’t know what’s going on it seems pointless, doesn’t it?

So, would, can you sort of tell me about that, what happened there? What, did they send you to have more tests? Who did you see about it?

Eric: Well, I did a simple memory test didn’t I, you know?

Ros: Cognition test.

Eric: A, where they tell you every, a story, someone lives at somewhere and who would do, what to do, and I did those tests, he was marking out what the time was on the clock and that sort of thing. What else was it?

Ros: You got something like 28 out of 30, which was quite high, surprisingly.

Eric: But it went down the next time I did it to, was it 26 or something?

Ros: Yeah.

Eric: So, it was a definite movement and that made me feel uncomfortable [laughs].

I hadn’t yet told anybody. I’d told my daughter that I was looking into it a bit but she didn’t at that stage come with me. I just, because I thought I might be making it up. I thought it, you know, there was always an outside chance that people do occasionally drop a remote control, without any awareness, in a bowl of water. You know, [laughs] there was, you know, I wasn’t so sure so, so at that stage I didn’t say anything. And he did, you know, the usual memory test, which of course I pass 100% every time and lots of people do who’ve got, you know, who are reasonably OK and intelligent and so on. I think it’s a rubbish test [laughs] to be honest. And he said “well there is some cognitive impairment” and there’s only, there’s, the statistics showed that it was about a 50-50 chance, either that it was just Mild Cognitive Impairment, as I get older or it could be dementia and Alzheimer’s probably and the only way to find out was to have a PET scan.

Memory loss was the main thing but I also, I felt that my work, I was getting a little overwhelmed, making a few mistakes that I shouldn’t have done. So, I’d gone to the doctor and he’d referred me to the local mental health hospital for assessment, did the mini mental test and I passed it; however, a few months later it was, I noticed it was just getting worse; and it wasn’t age-related memory loss at that stage because I was too young, I was only about sixty-one at this point in time, actually I was younger than that. However, I went back again, got referred back to the hospital; this time I failed the mini mental test and they did the bigger, the advanced test, and they were concerned. Sent me to a consultant who sent me for an MRI scan; I returned for the results of the MRI scan, fully believing by this time it was, it’s age-related, there’s, there’s nothing wrong with me, and he then told me the diagnosis was ear, very early stages of vascular dementia and Alzheimer’s. I came home, I cried and I got up the next day and said, “Stuff this, it’s not going to beat me,” and that’s the start of my journey.

So, I think on the phone you were telling me about how you came about the diagnosis, you were, you were being checked for your antiretroviral drugs?

That’s right, yeah. It was at the back of my mind, I’d been taking them, oh for many years, over thirty years, and there’s not really any research that I could find as to what the side effects might be from taking the, the medication for so long, and I spoke to the consultant at the [health] Unit and he decided that as part of his, his conclusion to that, that concern he’d put me through a series of memory testing, well sort of a spinal test, a brain scan and whatever, and that was how the diagnosis came about.

I was very lucky through the [health] Unit to have my series of tests very quickly and it came about that lots of people are waiting around four years to have those tests carried out. So, as I say, I was very lucky for it to be done very fast.

And you had a thorough set of tests by the sounds of it?

Yeah, yeah.

The scans and…

I had the brain scan, I had the test, the memory test and I had a lumbar puncture as well; I’m not quite sure where that fitted in; and the results, I can’t remember if there was anything else but I don’t think so, but that, the results led to me being prescribed the medication.

Yeah, yeah, mm, which has helped; so that’s a good, good outcome isn’t it?

Mm.

The process of getting this diagnosis, frontotemporal dementia, and you said that some of the people from the memory clinic came to you, came here to visit you to do the tests, etc, the scores?

Richard: Mm.

So, can you sort of talk me through that, what they did for you when you, when they came?

Richard: Absolutely not, I’ve forgotten.

That’s all right.

Richard: I’m sorry [laughs].

That’s absolutely fine, just curious. Would you like to tell me what you can remember of it?

Viv: Firstly, he didn’t, there was no rapport between him and the doctor; he found it intimidating and also, he found it, he found it very hard because he was realising more and more how he couldn’t figure out the questions or answer the questions or remember anything, and that made you feel very small and it made him feel awful actually. So, I had to actually delay her coming again because he was dreading, he dreaded the whole thing, whole situation [sighs]. He had retired already probably a year before this all was diagnosed and for him to know exactly which day it was, or date, one day rolls into another.

True.

Viv: And when you’re not working that kind of importance is not there in the head.

Mm, like when you’re on holiday isn’t it?

Viv: Yeah [Richard: laughs].