In the next 20 years over a million of us will have dementia, yet dementia care is something we are often reluctant to think about. Gerry Robinson, whose father had the disease when he died, returns to our screens in a new series that highlights this important issue.
In this podcast, Gerry Robinson reflects on his experience of filming in a number of struggling care homes, where he examined the way they are run in a bid to improve conditions for residents.
I suppose my own involvement in it probably is probably stimulated by my father who had dementia at 84, and for reasons I've never quite understood something in me knew to stay with him rather than try and bring him back to me.
What was striking for me was how cogent he was when he got into certain territory and in a sense the older that territory the more cogent he was. For whatever reason it did seem to me to be the place to be was to be with him – and of course that is now generally accepted to be the right way forward in dealing with people with dementia.
Literally without exception - literally in every case, sometimes taking longer than others - but if you gave enough time with any one that you sat with and sat with quietly and sat with either holding their hand or looking them in the eye you got something. Some thread got picked up.
People told you amazing stories about their lives, what they'd done in the war, how they'd lost their loved ones. I mean really, really, kind of poignant and potent stuff.
You couldn’t but come away from an encounter like that and not feel that they had got quite a lot from it. And it must be awful mustn’t it? It must be just awful to be wandering around in a… in your mind, in a lost sense, and have so little connection.
And when those connections happen how potent and powerful they are.
The worry that people have is that you know people are in danger and therefore they don't allow them access to things like gardening tools; or give them an opportunity to do some things which have an element of risk. And therefore you have you lose that sense of them, living in their own homes, and having some kind of… some kind of normal life.
You have an overly protected approach. And I think the thing that strikes me most is that there is an automatic assumption that when people are angry and frustrated and they shout and… Actually, sometimes striking out in dementia care, that’s nothing to do with dementia.
That's the frustration that goes with not being heard, not being able to communicate in the normal run of things. So our assumption is that dementia has all these characteristics. It really, really doesn’t.
When you get good dementia care there is such a pay off, when somebody is well handled in dementia versus being badly handled and it's very obvious when you see it.
I'm really hoping that the programme will have the impact of making people realise that actually it isn't the quality of the curtains or the colour of the carpet or even the fact that it doesn’t smell, important though that may be. Those aren't the things that matter.
If you're going to put a loved one into a home - and clearly that is a necessity at times, you'd better spend a day and actually look what happens. Look to see what kind of care is going on, what kind of connection is there with the residents? How much is being done to keep the residents active, involved, in touch with themselves, feeling part of something, feeling like a home rather than an institution.
That’s what will change - what will change the ways that homes operate is the choice of the customer, and the customer is nearly always not the resident but a relation of the resident.
And I'm hoping that the programme, if it does anything, will make us choose homes where this kind of care happens. And what's interesting of course is if you run a home very successfully - and obviously I've seen some which are just brilliant - then the economics also work for you because people want to come to the home.
I don’t have a problem with the profit motive. I have a problem with the profit motive when the profit is earned as a result of skimping and cutting back.
If the profit is earned because the home is full because people want to be there because people can see those making the decisions can see that it is a happy experience for those that are in there I have no problem with that at all. I'm up for it in fact. I'm completely up for it because I think that kind of service, that kind of caring, should be rewarded.
We need to think about this in a way which allows these people, who have done amazing things, really amazing things, and to remind ourselves of that, and end up caring for them in a way which keeps their dignity.
And it's perfectly possible. I suppose that for me is the both the hope and - in a way - the fear. If your starting point is that you think this “people with dementia, you know, they just have dementia and that’s all there is to it”, then when you see that it can actually be managed brilliantly, from the point of view of the resident, and that you can have a group of people who, although you can't solve the problems of the disease, you can certainly leave them feeling happy, involved, connected as far as that’s possible. And honestly you can so see that when it's there.
And I think that’s a lesson that this can be done properly and it doesn’t have to be done - it's not a choice between money and care. Both are possible. It's possible to make a reasonable living out of this and still do it well and care for those that - you know – that are under your care.
Gerry Robinson was talking to The Open University in a telephone interview.