Rob Rinder offers support for Lewy Body Society
An Interview with Rob Rinder whose father is living with a diagnosis of Lewy body dementia. Credit: Lewy Body Society
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00:00Well, hi everyone. Yeah, so my dad has Lewy body dementia and it was very difficult to
00:13get a diagnosis at the beginning, as a lot of people listening to this will understand
00:18because first of all, he's relatively young. He was relatively young when he was diagnosed
00:24at the end of his 60s, or as he would have said slightly earlier on when he was more
00:30well, 60 plus that. And again, as many people will have experienced listening to this, it
00:42doesn't happen in one moment. It's a series of subtle changes to begin with that then
00:49become more evident and obvious. And that's very difficult for families and loved ones
00:55around them because you start thinking, is there something strange going on? And then
00:59gradually it becomes more obvious. And in my dad's case, that's exactly kind of what
01:04happened. At first he was living a very normal life and then there were these changes and
01:11it became evident that there was a problem. And at first, we weren't really sure what
01:18that was. Eventually, it looked like what you might describe as a kind of dementia presentation.
01:24But again, because he was such a young person, relatively young person, that wasn't immediately
01:31clear. Then he'd gone on a cruise with his partner and he'd had what first appeared to
01:39be a series of mini strokes. And from there, we eventually, as a family around him, got
01:47an appointment in London with a brilliant doctor, Dr. Ramona Weil, who will be known
01:55to a number of people in the Lewy body community. And I was sitting with my brother as she carried
02:03out a series of tests. I'm sure I'm getting this timeline wrong, by the way, because again,
02:09as a number of loved ones in this shared space and community will have no doubt experienced
02:14your sort of memory of how the series event results evolve into a diagnosis, takes place,
02:21becomes quite blurred. But eventually we met this doctor who carried out a series of tests
02:25and was quite, very extraordinary. Because at first, he seemed to answer all of the questions
02:33very clearly. And you know, you sit there with your brother and think, okay, I think
02:40I can count back from 10 and do all of the things. And gradually, the questions became
02:46seemingly more challenging. And again, he was able to answer them fairly straightforwardly.
02:52And then, in the most curious way, affecting way, moving way, actually, she drew a picture
03:01and very straightforward shape and asked him to draw the same thing he couldn't. And then
03:07there was a moment as he looked at her and she very kindly looked at him and asked him how many
03:14times he sees people, how often rather he sees people who are not there. And he told her as if
03:24it were nothing. So that, of course, I say, of course, because it will be, of course, to many
03:28people here, was clear evidence that he was having hallucinations. And then followed with a brain scan,
03:35etc. We were given that diagnosis. And it was, at first, a sort of relief, let's say,
03:46firstly, because we didn't know very much about, as no doubt will come onto the lack of research
03:50that there is in new bodies, or the kind of lack of clarity of the prognosis as to what's going to
03:56happen and when, which is the most darkly frustrating and difficult issue of all.
04:02But it was good to have an answer. That's the thing, to the strange collection of behaviours.
04:10And once we knew, we were like, OK, fine. Now we know at least what it is we can begin the work
04:19of putting a care plan alongside one another in place. And we're very blessed to be alongside
04:26a great family, my uncle and aunt, the forefront of it. And also, to have had Ramon a while,
04:37and that community, to be able to speak to them fairly effectively, to say the least.
04:44And also, in our case, as a community, to have Jewish care who have provided,
04:52when it's come to the situation my dad now is in, where he needs full-time care, to really have
04:59been there in the best way possible for him. But it's a very difficult one, as many people will
05:05know, because the first thing that you want to ask is all of the very dark and difficult questions.
05:14What will this look like? How long will the process take play? How long will the process be?
05:19How bad will it get? How soon? And we, as human beings, want definite answers for that,
05:24because we want to be able to plan, and we want to know. And LewBody doesn't give that to any
05:31family, because it's different for every single sufferer, as many people will know. For a lot of
05:36people who are living with this disease, there simply isn't the care out there. There isn't the
05:41quick access to a diagnosis. And certainly, there isn't the type of funding required to
05:50give individuals and loved ones the very real and demanding assistance that's required for a
05:58disease like this, especially where it changes very quickly, and the level of care might simply,
06:07frankly, alter overnight. So we're enjoying the time that we have alongside each other,
06:12which is the most important thing of all, to not kind of grieve insofar as possible what
06:18he can't do, what he can't remember, but to delight in and to find humour and fun,
06:23and even joy in the things that he can. And so that's been really, really special.
06:31But the most frustrating thing of all, and it is a frustration,
06:35as I'm sure lots of people hearing this will understand, is the not knowing and the lack
06:43of clarity. And it's nobody's fault. It's just there isn't the research.
06:49This is a form of dementia and Parkinsonism, which, though definitely not rare, there isn't the work
06:57or the sufficient analysis for families in our situation to have quality information,
07:07leaving aside just, by the way, that medication, and obviously, the advances we'd all like to see
07:14in helping people living with this condition live longer. We'd also like simply the type of research
07:22which could at least help people, as I say, live in less anxiety about how the disease will change
07:29the person and provide all of us with better, a better prediction so that we're better prepared
07:36and ready for when all of the various moments in this disease emerge.