Support for people with PCA

One thing we found early on is that a common experience for people with PCA, because it’s a relatively rare condition, is that people were asking us, am I the only one with this? And so that is what prompted us to start this PCA support group, which we now run available to people across the country, is really to provide community, to give people the experience that they’re not alone. There are other people who either are on this journey, or have been down this path before, who can give you advice, or even just can understand what it’s like in a way that I as a professional can’t because I haven’t lived it 24 hours a day.

I’m Jill, for those of you I haven’t managed to say hello to yet. There are various members of staff from the Dementia Research Centre here today. And we’ve all got kind of blue name badges around our necks. So if anybody has a badge like this around their neck grab them with any requests or any questions you have that we can answer for you or make life easier in any way. One of the things Valerie and I talked about is that some of your close friends, you know, who you think will kind of stick with you, sometimes those people, I think they don’t know how to deal with the disease, or things.

And so you kind of don’t hear very much from them. And I think maybe they’re embarrassed. They don’t know how to approach and how to cope so they don’t do very much. And it’s quite hurtful sometimes. Apart from us all benefiting as patients and carers, it is of course, led by the research, and the development, and people who are treating us. And so I think it gives a lot of feedback to people who we are beholden to, in terms of the drug trial– well, you’re on a drug trial– and in terms of the treatment generally, because that’s the only way they’re getting a really good feedback.

I think being able to contribute to the research is, you know, very important to me and Noel has taken part in various research projects when he was first going there a lot. And I think that made him feel good also, just as you were saying, is that you want to do whatever you can to try to benefit, or at least get the research moving forward. And this is a trial drug. And it’s finished its third stage clinical trial and it’s now an open-label trial so everyone on it is actually taking the drug, not a placebo or something. So it’s not a- that’s very good. So it’s, you know.

But whether or not it’s successful, at least we feel we’re doing something.

I’m involved in a project in Luton to find out what carers have problems with and what one or two things would make their life better as a carer. And the project is a co-production project with all the organisations in Luton involved with dementia. And led by the council, who are very good in Luton with dementia and carers particularly. And was started by one of the GPs who deals mainly with dementia patients. She was spotting carer breakdown. So this project is to try and find ways of avoiding carer breakdown and you know, to improve carers’ life generally. My family are incredibly supportive, my three kids.

And so we organised a charity bike ride in Majorca– Well, they all love cycling –which has raised quite a lot. I’ve done personal letters to business contacts and so on, and we’ve raised quite a substantial sum over the last 12 months for a particular PCA research project. And I think it’s beholden to us as patients and carers to do everything we can. These sorts of groups exist, as I say, to bring people together, to provide them with information about their condition, hopefully at the time they want it, rather than just having a splurge of information at the time of diagnosis and then nothing after.

So we have regular meetings that people can come to at any time, to provide that sense of community and sort of a shared sense of, everything that can be done is being done, which means updating people about new research findings, fundraising efforts, public and policy changes. My name’s Chris Lane and some of you may actually have met me in one of the cognitive disorders clinics where I work as one of the doctors. And I’m also doing a PhD at the Dementia Research Centre. So I’ve been asked today to talk a little bit about medication and PCA.

And I thought I’d just give you an overview of what I’m hoping to talk about today, and hopefully this does answer some of your questions. I’m going to talk a little bit about the symptomatic treatments that are available in PCA. And these are treatments that help the symptoms of PCA. What I’m also going to do is talk a little bit about future avenues in drug therapy in PCA. And sort of talking a little bit more about some of the disease-modifying treatments that are being developed. And so these are treatments that, rather than purely treating the symptoms, they actually act on the underlying process to try and slow down the disease. So the importance of regular tablet taking.

Well I mean, they should be taken, ideally, every day, of course. Just because in order to try and keep the levels of the drug in the bloodstream at a reasonably stable level. And also trying to let people with PCA drive the research questions that we’re asking, rather than us saying, top-down, this is the research you’re interested in, this is the relevant question. We try as much as possible to listen to the experiences people have, and to pick out the ones we don’t understand at all, and let those be the primary questions we’re addressing in our research.

So for example, PCA is typically described as the visual dementia, but what we found is that a lot of people are describing strange sensations, and particularly problems with balance. One lady asking her daughter, am I the right way up? Another person saying, that when he walked down the pavement he felt like he was about to fall off the edge of the world. So, he was straight but perceived himself as leaning over. Whereas other people perceive themselves as straight and actually are leaning over, causing difficulties for walking, being able to get around services, meet friends, et cetera.

And so we’ve got a whole experiment which– and grant funded by the Alzheimer’s Society which has sprung off that, working with a balance specialist and physiologist. Questions we would have never dreamed of asking had we not heard what about these challenges that people are facing, and these experiences that they have which they don’t understand. Jill has been immensely creative in getting interesting people along, in running those sessions. And I’ve got real value from being able to talk to others, to listen to their complaints, and sometimes, in a gentle way. Because that’s what you can do, is say, well, have you thought of such and such. Or is that something that maybe you could actually do.

So I find that is very nurturing and as much as possible we will attend.