There are times when you know you need, for example you are looking for a loo, when you do get in,
can you get out again? It does sound really silly, but you do feel like one of those clowns that
sort of is pretending there’s a sheet of mirror, of glass in front of you. It’s a bit like that,
you’re sort of going round the room like this and to be honest sometimes you’re waiting
for your wife to come and say, are you still in there, come on out, I don’t know. [laughs]
Ian Grant, a dentist in Swindon, was diagnosed with dementia at 59
and had to give up work at his practice.
We ended up seeing a neurologist at the local hospital, which was not one of my best experiences.
And um, to be honest then, we then spent a year, over a year, trying to find out
exactly what was going on.
Very much up until now, people have come to their doctors and that’s been the last thing probably
on the list, dementia. So they are regularly being diagnosed with depression or mental health problems,
you know, and sent away. And certainly the people that I’ve worked with on the whole have sometimes
gone up to two years without getting a formal diagnosis and it’s been heartbreaking.
Maria believes that because there are relatively few people with early onset dementia,
even after diagnosis, services can be lacking.
The problem is that often people get a lot of help at the beginning and then they’re left
to fend for themselves without really being plugged into local services.
At the Forget-Me-Not Centre in Swindon, they exclusively support people under 65 with early
onset dementia. Funded by Avon and Wiltshire Partnership NHS Trust, people are referred
through their GP or older mental health services.
- What time we going? - Probably about 11 o’clock.
Lynda’s just phoned and said she’s just leaving, she’ll be about half an hour.
The understanding in society is it’s a disease of old age, so if you’re diagnosed in your early 50’s
or early 60’s or even earlier, that’s quite devastating, your expectations of life are
different, you’re in the full thrust of your adult life, you’ve often got dependent children,
you know, you expect to go on working, you’re looking forward to retirement, the financial
implications are absolutely enormous.
I was suddenly faced with all the angst and the worry and the worry of where were we going,
what was happening, you know.
Ian was referred to the centre, and like all clients can receive counselling and support if he needs it.
You don’t look like you’ve got an illness, you look perfectly normal and therefore people expect you to
be able to function, and you know that’s very hard for people to contend with. And you can’t
sit in a dark room, and do nothing, you have to engage with life, and that means engaging
in the real world which is really tough.
It’s just a bit confusing, you know, finding the places I wanted to go to.
- It’s hard isn’t it? - It is, quite. And the other thing…
You can’t necessarily tell people how to live a better life. For a while you have to do it with
them. So for example if somebody is really scared and living at home and hasn’t gone out for ages
because they’ve had a terrible experience in the shop and they can’t get the bus anymore.
Then actually, they can find their way to the shop, but you have to do it with them. Every single
thing needs to be broken down into very small tasks, and practiced a lot. So that’s a big message for
services, I think, because it’s not about sitting in a clinic room, you can only help people and show
them the way by doing it with them for a while.
Good, press that one down, that’s it.
- Thank you very much. - Is that enough?
With rehabilitation in mind, individuals are encouraged to take on simple tasks, like making
a picnic for their regular sailing trip.
You want a bit of danger in everything really. Nobody wants to be cocooned really, and if
we can make it so that - some of us are fitter than others, then we can help each other you know.
- Step down - That’s it, Terry, well done.
Sandy Reed found out she had dementia at age 58.
They said to me oh yes, there’s something wrong. And after that I was just sent home, there was no
follow on straightaway or anything. You know to be told you’ve got something and then left,
it’s horrible. And it got to the stage where I’d just sit in the house and draw the curtains.
And I think the depression set in then and Lynda came along and said would you like to
start at Forget-Me-Not and I thought, I’ll give it a try, but I won’t stay.
- Uh-oh! - We’re trying to look professional, you know!
It's such an invisible illness, and people are so shamed about describing their difficulties,
that to be in an environment where they can do, not just ordinary things, but great and amazing things,
is transformational actually. And it enables people to take the lead, to take responsibility where
they can, they can learn each week to do a little bit extra so you know - how lovely to go home
and have something to talk about actually.
- Come on - There you go
It was a challenge for me because of the water. But I thought, come on girl, if the rest of
them can do it, you show them you can do it.
- I’m dead, I’m dead. - You’re alright.
So I got in there, and it was really good, really good.
- Look, I’ve got hold of my string! - [laughs]
I try anything, I’m afraid. I’m a bit of a risky person.
People with dementia who are under 65 are often really quite physically fit. So being able to go
somewhere in which you have a physical regime, you know you enjoy activities, you get involved with
other people, peer support is absolutely crucial. You know, being in touch with other people who
share the same diagnosis can make such a deal of difference because you don’t feel marginalised
anymore, and you certainly feel included.
Excellent, excellent. That was quite energetic, the paddling, I think you’ve heard everybody
laughing all the time. So it’s a great day, you know. And my wife knows where I am,
but she can do what the hell she likes.
There may be some doors opening in terms of social care personal budgets, obviously the younger
person with dementia would have to be eligible for that budget, which means they would have to have
critical care needs, possibly living by themselves and having other severe needs. But the possibility
is there and I would have thought that this group is very very well set up for taking
advantage of the social care personal budgets.
Although we are specialist mental health actually this model is a very very worthy model and a model
that ought to be embedded in practice across the UK, I think, in dementia care. Fundamentally people are
not in any care service unless they’re offered opportunities to do what they want to do and
supported to do what they want to do. They don’t want things taken away from them, they want
to be empowered to do whatever it is, and to take the risks that make life worth living.
It’s a different life but it’s a good life, it’s a good life that we’ve got at the
moment at the club. In fact it’s quite wonderful. Best carers in the world.