Richard and Viv
Richard was diagnosed with frontotemporal dementia at the age of 66. Richard and Viv feel a little isolated as neither of them now drive which makes accessing local facilities or dementia support groups very difficult.
Richard is aged 68 and lives with his wife, Viv in a small village with limited transport connections. He ran his own kitchen design service for thirty years and is now retired. Richard is an accomplished guitarist and also achieved black belt in karate.
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Richard and Viv have three sons. They are all working but help out as often as they can. Richard was dedicated to his design business and was a workaholic, Viv says. He enjoys talking to his sons about what they are doing.
Richard and Viv have a lovely garden which Richard designed years ago. He likes to walk in the garden but is too anxious to going any further in case he gets lost. The evenings are difficult for Richard as the darkness brings on confusion.
We asked Richard if he had advice for others who are having memory problems.
We asked Richard if he had advice for others who are having memory problems.
That’s a hard question.
It is, sorry.
I wouldn’t know how to, how to answer that, I’m sorry.
What about what advice would you give yourself? [Laughs].
Keep going. Keep going and don’t stop.
Even though Richard left India when he was a young child, he has memories of living there.
Even though Richard left India when he was a young child, he has memories of living there.
So, do you remember anything of being in Bombay even though you were only four when you left?
I can still picture the, where we lived yes, and I would like to go back and, you know, see who’s still alive [laughs].
Although Richard feels his playing is not good enough now, Viv says he lights up when he plays.
Although Richard feels his playing is not good enough now, Viv says he lights up when he plays.
Have you changed some of the things that you used to do, hobbies or sports or?
Richard: My hobbies have gone.
What sort of hobbies would you have done?
Richard: Music.
Playing music?
Richard: Playing music.
What did you play?
Richard: Guitar. I mean I still plink and plonk about but, you know, it’s, it’s getting harder and harder.
So, you, you just feel like you, you’re not playing it to the standard you used to?
Richard: I haven’t touched the guitar for about [laughs] a few months now.
Viv: No, you, you can play, but certain chords you forget, and you did play yesterday, so.
Richard: Oh right.
Viv: I have to really pressurise you to play [laughter] because when you’re playing the guitar and it’s sort of, your eyes, you know, light up and you stick to a rhythm which you hear off the music on YouTube and it helps you.
Richard: Mm.
And when did, were, were you, did you learn to play guitar at, at school or was that just something you did?
Richard: It started at school, yeah, yeah, at the, the same school I’m talking about [name of school], horrible thing [laughs] but, you know, the, the people who wanted to play music, they got their guitars out, they got the, you know, there was a drummer, there was a, you know, we could have had a, you know, a band, but it didn’t happen.
Mm, no, just do it for fun.
Richard: Yeah.
Did you take exams in music?
Richard: Yeah, yeah, that was easy [laughs] dots all over the place, you know, that was dead easy.
Living in a remote area means Richard and Viv struggle to get to local groups.
Living in a remote area means Richard and Viv struggle to get to local groups.
What about things on Zoom or anything like that, have you tried any of those? Some people had little groups on Zoom, you know, during the pandemic but a lot of them have continued.
Richard: No.
Have you, do you use Zoom at all to chat with your family or anything?
Viv: Yeah, I do, not, not Richard so much, but I haven’t looked at that but I, but I don’t think there is any local Zoom.
Well, you could do it in anywhere.
Viv: Anywhere, yeah, yeah.
Actually, yes, that’s a good idea, I guess I can just do that to see if we can find one on Zoom or, or even an exercise one, because that is something so important, I have been told, and having someone who did karate all those years ago.
Richard experienced side effects with his medication for frontotemporal dementia.
Richard experienced side effects with his medication for frontotemporal dementia.
Viv: And of course, some of the side effects of the Memantine, you know, the Memantine, whatever they say, and that could be the reason for thinking there’s someone in the room, else in the room.
Yeah, yeah.
Viv: That, that could be part of the confusion; so, it could be the medication.
It might be; have you spoken to your doctor about the medication that you’re on, you, you know, sort of ask them to review it?
Viv: Very much so, I have, yeah.
Richard: Mm.
Viv: But we stopped it for a little while, for a month but everything got worse so he went back on.
Getting the diagnosis of frontotemporal dementia was tough for Richard.
Getting the diagnosis of frontotemporal dementia was tough for Richard.
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.
To begin with, Richard was told he had pseudo-dementia and depression.
To begin with, Richard was told he had pseudo-dementia and depression.
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.
Richard’s assessment was done at his home but he found it intimidating.
Richard’s assessment was done at his home but he found it intimidating.
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].
Richard is no longer interested in his hobbies.
Richard is no longer interested in his hobbies.
Tell me about those signs, the sort of symptoms that you’re, that affect your everyday life?
Tiredness, sometimes confusion…what else can I pick out? [Laughs] Oh [sighs] oh gosh, run out.
Have you, have you changed some of the things that you used to do, hobbies or sports or?
My hobbies have gone.
Richard goes through this every evening but during the day he cannot remember – so his wife explains about sundowning.
Richard goes through this every evening but during the day he cannot remember – so his wife explains about sundowning.
Do you, sort of during the day when everything’s bright and fine, do you not think about that or is it just in the evenings when it’s in the moment?
Richard: Just in the evenings, well not at night. Mm, mm, mm. Are you able to tell me about that from your own perspective, what it, what it is that sort of is confusing or frightening?
Richard: Mm, oh if I’m indoors it’s all right, if I’m stranded outside [laughs] somewhere I might panic a bit.
Viv: No, you find it hard even indoors.
Richard: Oh.
Viv: Yeah, yeah. It’s not even the daytime it’s, as I call it, it’s the brain clock, if I can put it that way, that affects people, or him in particular, because we, you know, we’ve got the summer months and it’s been a great advantage and hoped that it wouldn’t happen, but it does happen, it’s just automatic; after about six o’clock he’s worried about the darkness, he’s worried about this, where am I, what am I, etc.
The change in personality was noticeable in Richard.
The change in personality was noticeable in Richard.
Have, have you, have you always been quite a quiet person? You’re not somebody who particularly wants to?
Richard: I used to be a loud person.
Viv: Yes [laughs], gregarious [Richard laughs] you were very social, very gregarious; that has changed, oh drastically, completely.