This video is a conversation between Stan, who was diagnosed with dementia in 2021, and Sam, his Memory Support Worker. They talk about Stan’s experience of receiving his diagnosis and what is important to him for living well with dementia.
Sam: So, Stan, we first met your care plan appointment at the surgery in Saltdean, which was following your diagnosis. How did you find that appointment for you?
Stan: I found it very interesting. I didn’t know what to expect. My expectation levels were quite high, but I didn’t know what to expect. So I eased back on my expectations to a degree and looked forward to develop my time with dementia.
Sam: How would you say it’s been for you adjusting to the diagnosis? Because obviously receiving a diagnosis like dementia can be quite a significant thing for people. How would you say the adjustment process has been for you?
Stan: Well, it’s… first of all it was strange because there’s no cure for it as it stands at the moment, but that is the same for various other type of mental health problems as well. That there’s no known cure at the moment for it. I just think I’ve adjusted quite well. The important thing is to remember is that you’re not on your own.
Sam: Absolutely.
Stan: Because it can, it can be a lonely disease.
Sam: It can be quite lonely.
Stan: Oh it’s very lonely.
Sam: It’s quite an isolating condition at times.
Stan: Oh yes, it is.
Sam: So making sure that you continue with the sort of social activities and being involved with conversations and talking to people, having those interactions is really important, isn’t it? To reduce that, that lonely feeling?
Stan: Yeah the important thing is do not switch off.
Sam: Yeah.
Stan: Don’t press the self-destruct button. And make a go of it.
TITLE: A personalised care plan supports Stan to live well
Stan: The care plan is such an important issue. It is with me.
Sam: Yeah. I think the care plan is a-
Stan: It’s a bible.
Sam: Yep, that’s a good way of putting it.
Stan: It’s my bible. On my condition.
Sam: Yes. And the nice thing about the care plan is it’s something we develop together. So we talk about what’s important to you, and we can include that into the care plan and also put in information in there that might be helpful for the future if you didn’t need it at that time.
Stan: It’s like my medication. You know, I’ve started, I’ve set off on five mg, I think it was. I’m now up to ten. So it’s about working together.
Sam: Yes.
Stan: And where you are with it. And when something comes along where they say, yep, I think we might need to up that now to ten and that’s fine. I’m perfectly alright with that. It’s not a question of us shutting the doors on you. It’s a question of opening more doors for you.
Sam: Yeah, that’s a great way to look at it, isn’t it?
Stan: You’re looking at something which is vitally important for you to do.
Sam: Yeah. So I know when we had that appointment it was quite clear that for you it was important to share your experiences and be involved in helping other people to get the right support as well.
Stan: Yeah, I think I agree with that, Sam, I totally agree with you on that. I think the people should get the support they can. And you give that support to people. You, you initially lay out that support with the diagnosis, then people know exactly where they are with it.
Sam: Yeah.
Stan: And are able to get that support that they do need. And I think it’s very important that we talk about these things rather than shut ourselves away. It’s not a disease that respects people that do that. It will just gnaw, it will just slowly drift on for you.
But if you, you’re not so much making a fight of it, but you’re understanding it a lot more so you’re able to live with that.
Sam: Yeah.
Stan: And it’s living with dementia that is the important thing.
TITLE: Stan’s role as a Patient Champion
Sam: And I know you’ve agreed to be a Patient Champion for us, Stan. Which we’re very grateful for.
Stan: Looking forward to it. If I can help in any way I’ll gladly do so.
Sam: Yeah.
Stan: You know, just keep me busy.
Sam: We will do, don’t worry. But it’ll be good to again, have someone with dementia to be involved in how we change our processes and how we approach things in the future. So it’ll be really good to have your perspective on things.
Stan: Yeah. What you don’t want to do is you don’t want to be in the situation where you’ve got this dogma where by that I mean, I mean that in the nicest possible way, but where you continually say, yeah, we’re going to do this, we will go down that line and there must be some variation where they can be changes brought to that. And I think that’s vitally important.
Sam: Absolutely.
Stan: Where things will work a lot better.
Sam: Definitely.
Stan: I’m not saying that they don’t work now, but it might take a bit of pressure off your good self!
Sam: There’s always room for improvement, Stan, and I think you’ll be really great at helping us to do that. So we really appreciate it. Well I live with the disease so I’ll help as much as I can.
Sam: Amazing.
The research that you take part in is also really helpful in shaping things for the future. So for people that will potentially be looking to go through the memory assessment process in the future, having feedback from people like yourself and Anne is really important for us to help shape the way the service is in the future for people.
So it’s definitely sort of making a big contribution to the way dementia is going to be dealt with and looked after and how people will be sort of seen in the service going forward.
TITLE: What should you do if you are worried about your memory?
Sam: Do you have any advice that you would give to anyone that’s sort of having problems with their memory and thinking about having a memory assessment?
Stan: I would I would go, first of all there’s your GP, if you go and see your GP, he will then do a referral for you. And I think that is one of the most important things. How silly it might be, I think that with dementia, if you ignore it, it’s better to be safe than sorry.
Sam: Yes.
Stan: And if you get… you don’t want to be suddenly confronted with a serious illness problem, you want that problem to be sorted before you get too old with it.
I’m lucky to have a good wife. We’ve been married, what, 53 years now. It’s 54 years coming up in June the 14th. And she’s there and she’s able to keep a very close eye on me. And when I’ve been overdoing it, she says, whoa, slow down.
Sam: Yeah.
Stan: And she’s very good that way, well she’s very good all round.
If you are on your own, try and find some dementia group or somewhere like that where you can be a part of something.
Sam: Yes, yeah.
Stan: Rather than be in a situation where you’re on your own. Loneliness is, it’s terrible.
Sam: Yeah, it quite often makes things a lot worse, doesn’t it? When you spend time on your own?
Stan: It makes your life decisions that you’re going to make a lot harder to do rather than the alternative.
Sam: Yeah, it’s always good to have that sort of community around you and that support network around you to help you sort of talk things through and think about things more, isn’t it?
Stan: Yeah, what I, what I have found, Sam, I’m not just saying it because you’re sitting opposite me is the fact that you’re very easy to talk to.
Sam: It’s good that you do contact me because that’s what we’re here for as Memory Support Workers, we have that, you know, to build up a relationship with our patients and we’re always there.
We always say to people, if you need us, just call us. And it’s nice that you do, because I think some people worry about doing that because we’re busy or, you know, they don’t want, some people say, we don’t want to be a nuisance and you know, it’s never a nuisance. It’s always lovely to speak with you
all.
Stan: Yeah, I know that. And it’s valued.
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