Living with dementia and memory problems

So sometimes people will go into the system and their diagnosis is not simple; so, they stay in this system or more and more and more tests and, and that can take a year/two years, you know, sometimes. So that’s a very concerning issue for people as well, is to make the decision to seek help – one thing, so that’s very anxiety-making and very scary sometimes, but then the waiting lists can be huge, depending on where you are. So, it’s not actually as simple of, I make a decision today, I go to see somebody next week, I get my diagnosis the week after, and then we plan for the future; it’s very rarely that. And so, people are often – delayed; I guess that’s where; the type of service we provide is for people who have concerns as well as diagnosis, otherwise there’s this sort of gap for provision as well. So, people are pretty sure something’s happening but they don’t know what it is and they don’t know how long it’s going to take to get an answer, so, and that process can take a long time depending on where you are, what services are available, and the waiting lists.

So, what, who did you see first then?

Well, I knew I’d got, I had a, because I was self-employed mostly, I had an insurance policy for my health, which I hadn’t quite given up yet, and I had one free appointment with a consultant as part of that. So, I found the person I wanted to see and then I saw my GP because I needed GP referral. And my GP was very supportive of me doing it. It was somebody I hadn’t met before but she was, you know, behind it, and so referred me on. So, one of the things about my process through it is that it’s been very quick, I think, compared with most people’s.

Ok so how long ago was it that you started that process?

It was about nine months ago. So, it took about six months for me to get the diagnosis. But I’m very aware that it’s not always like that. And I also felt so strongly that if I had it, I really wanted to know and I wanted to do something and that was, that was so important to me. I wasn’t in a position where I was saying “no, I don’t want to look at this” I was really up for it.

So I decided to phone my GP service because of my memory and I, once I’d got past the receptionist I got to speak with a clinical nurse practitioner who did the usual, you know, ten, ten questions, I thought well this isn’t going to be of any use because, you know, this is not going to be a problem, and I was quite surprised when he said, “OK, I do think you probably do need to be seen by,” and that, I must admit, did take the wind out of my sails because I thought the questions were relatively easy. So, I thought what on earth did I get wrong to, to kind of merit this? And so, he made a referral to what was then, what is the memory clinic, our community memory clinic, and I went there. I had several sessions with, it was always with two people, with OT and a mental health nurse, for the assessment of my memory state; and I can remember distinctly because as soon as I started talking, they, nine times out of ten they trained at the same university, so they all said, oh you come from so-and-so. So, we’d spend a few minutes, you know, you know, saying how wonderful it was or how bad it was. [Interviewer laughs] And then – they were very keen to tell me, you know, “Are you sure you want to pursue this because there could be a likely diagnosis that could have an impact on you?” And I, you know, but, and I was very clear that, yes I did, because I want, I want to know is; I didn’t think, I didn’t think I had dementia, I didn’t think I had Alzheimer’s in particular, I, let’s, let’s say that, I didn’t think I had Alzheimer’s.

So, do you, what, when you had your diagnosis which is two and a half years ago, did you go to a memory clinic for some tests? 

Richard: I wouldn’t know now. [laughs]

Viv: They came here.

Oh OK, OK. So, they did, they maybe did some, sort of went through some tests with you or.

Richard: Mm.

Rather than, yeah, scans or anything like that?

Viv: Yes. So when Richard retired he, the year before, he, we had noticed that there, there was quite remarkable forgetfulness and we all thought well this doesn’t look right, but he went, he tried a psychologist because he got depressed, because he was a workaholic, I mean serious workaholic, he worked every hour they said to him, you know, and I, he did have a few sessions with a psychologist who diagnosed a pseudo-dementia, in his opinion, but I thought well let’s just clarify this because I don’t agree it’s pseudo-dementia; and the MRI showed it straightaway, it was frontotemporal dementia. So, it’s, that was definite diagnosis, and then the memory tests were done.

And they found that it was, the scores were very low; so, it had obviously been going on way before but we didn’t think about it. So that’s what happened, yeah.

I have PCA anyway, which is the same pathology as Alzheimer’s but begins in a in a different part of the brain and it is harder to get diagnosed because it isn’t, if you like, a common or garden or vanilla Alzheimer’s. In fact, there are several varieties. And I actually, was once told that I hadn’t got Alzheimer’s, after a scan, because they weren’t looking in a tiny little corner, where they, the PCA was, was hiding, which was a bit of a blow at that point.

Lorraine: And Dr [name] I think is psychologist there. And then we went and he diagnosed; well, the MRI had picked up ischemia on the scans.

Derek: Mm.

Lorraine: And then Dr [name] diagnosed you with mild cognitive, didn’t he, at that point?

Derek: Mm.

Lorraine: And you were still working and driving at that point, weren’t you?

Derek: Mm hmm.

So how old were you, were you then, when you first went to the doctors? 

Lorraine: Fifty-six.

So, the consultant did ring, she was guarded, hesitant, and said, “I,” she said, “well I think the, the important thing is you, I, you need to be seen by, I’d like another opinion and so I’m going to refer you to UCL to someone who’s got a specialist knowledge and they can see you in a satellite hospital so you don’t have to go up to London.” So that was, that was fine and I, we waited for that to happen. She said, “Whatever happens, I will keep seeing you, that’s not a problem.” So many months later we got a letter to see the consultant; am I allowed to say names or should I not?

It’s probably easier if you don’t.

OK [laughs]. So, I saw the consultant, or we saw the consultant from UCL; the very first thing was his manner, which was utterly amazing, his approach; and we were with him for two hours. Now, you know – if you get ten minutes with a consultant, you’re lucky, you get five minutes with a GP you’re even luckier; two hours, utterly, utterly amazing. He did various tests, etc, and at the end of it he said, “What do you want from me?” I said, “Well, you know, I’ve got these results, you know, I, can you tell me?” He said, “You want, of course,” he said, “what you want are the dots joining up?” I said, “Yes.” And he said, “Well I think you’ve got Lewy Body dementia, in fact I’m almost certain that you have.”

So, the PET scan happened and the neurologist went away on holiday which was very inconvenient of him [laughs]. But eventually, I rang the hospital and said “can I find out the result” and they actually emailed me and said, “you’ve got Alzheimer’s” [laughs]. And some people might say that’s a dreadful thing to do, but actually for me, given who I am, and what my approach to this is, it was absolutely fine because by the time I saw him, which was a week or so later, I had time to process it.

There was a bit of a shock for me, there was a sort of physical feeling of shock. But within a couple of days that had gone and I’d already started processing on from there and beginning to know what I wanted, how I wanted to deal with it and so I could have a much more useful conversation with him when I saw him again.

Yeah, that’s interesting, isn’t it?

Whereas probably if I’d been in the shock I would have, you know, it would have just all come from there, and, yeah.

Yeah, I’m sure- yes, that’s, that’s true actually about any diagnosis, I think. You, sort of, just reeling from the words they’ve said…[cough]

Yes [nodding]. Yes.

And it’s difficult to have a sensible conversation and ask the questions that you would if you have a few days to think about it.

Yeah. And, and I wasn’t panicking, you know, I wasn’t, and I know, I know it makes lots of people panic and I know it can be absolutely awful but that wasn’t how I was feeling. I’m not saying that I’m better or, you know, anything else, than anybody else but I was very, I felt very fortunate to be able to do what I was doing which was to get this definitive diagnosis because, you know, I could, he could show me, he showed me it so there was no, there’s no moving away from that.

Viv: So, he found that hard for a start and, yeah, he didn’t enjoy that at all. And then the actual day of diagnosis was even harder because he thought that was it, he was going to die, and it took him months and months of realising that dementia is something you have to live with and cope with and manage. Now that sort of thought doesn’t come in your head, luckily, which is good, and we just get on with it.

Richard: Mm.

How did you feel about going through that process?

Richard: Well, it was a, it was a tough time, but, you know, you’ve got to cross the [sighs] ticks and tick some cross, you know, and get on with it.