Enhanced dementia practice resource for inspectors

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Video transcript: Voices of experience

James, Scottish Dementia Working Group

Well I think the biggest factor was the way I was being treated by people. From being a capable adult, you got a diagnosis of dementia and suddenly you were written off, you couldn't do things for yourself anymore. I think I was programmed to accept that. But then I began to rebel and think I can still do things for myself and I can still give back to society. So it was just a process of re-discovering myself.

There was one time there was a dementia conference and I wasn't allowed in because I had dementia. At that time I had a support worker called Brenda and she backed me up. To cut a long story short, the next year I was back at the same conference presenting at it.

Again I thought, doctors, nurses, journalists have all got there unions. Carers have got their groups. But there are no groups for people with dementia anywhere in the world and I thought that was wrong. What did people fear if we got together, what did they think would happen?

So with the help of Brenda and Heather the three of us got together and set up the Scottish Dementia Working Group. I was the only member at one point but now it's mushroomed to over 100 members I believe.

But it was basically because I was driven into it by the way people were acting. They just don't understand that if you've got dementia you can still have some sort of life.

Everybody loses their confidence when they get a diagnosis of dementia. I was no exception. But through support from social work I got on a programme where I got person centred help and through that I got my confidence back up. I was able to do things. There's things I can't do now, like counting change and things like that, but there's still so much that I can do. And others: it's not just me, we've all got something to give back and that's why we're in the group. We're giving back to society for the help that we've been given.

Caroline, National Dementia Carers Action Network

Generally my experience is that when many people go into care homes their very rarely taken out doors and the importance of having fresh air and sunlight for vitamin D and all of the things that are linked to being outdoors is just one of the other things that can be taken away. I became an assessor with the Care Inspectorate and so I see things in other care homes, and I'm a great believer in if one care home is doing something really well, tell another care home share good practice because again most of these things are really simple, one of the big issues you hear from staff is we don't have enough staff, you have an activities coordinator in a care home they often one person out at a time, there's a garden at the back, why wait for the good weather so you're really hitting on things that I think are really crucial and need to be identified and highlighted much more, lets involve the communities if people can't access their communities bring the communities to the people in care homes, and the very specific's then could you spend an hour a week taking somebody or going for a walk with somebody, whatever the weather might be cause to me that sense of connectedness both with the person and with the environment to me its madness not to do that.

Diane, National Dementia Carers Action Network

I think the most important thing is just to remember that you might be new to this, but we are all new to this as well. It's not like this is the third time round that we can all learn from experiences with other family members.

For most of us this is the first time it has happened to us. We're like rabbits in headlights. We kind of need that emotional support, but we don't know we need it until we start to get it.

And we don't know what we need because we never experienced it before. And I felt we were quite lost. And even when social work did rock up to help us, we had no clue what they were there to do. So even if they can just be specific about what they can and cannot help us with, and just empathise with people like my dad that are just a wee bit too proud... even when they know what you're there for. Just reassure my dad that you're not going to take over his life, he's not going to become a statistic. But actually that you're thinking about him as a person and about my mum as a person.

Agnes, Scottish Dementia Working Group

I now have a Power of Attorney which took me five years to attend to because there wasn't enough, in my opinion, simplified information about it and it was quite a big complicated thing that I think could have been simplified better. Then once I had got it done, got the lawyer and got it signed I felt much better about it. But while it was hanging over my head it was like one of those kind of doom and gloom things, and I was giving talks by this time in the working group about power of attorney and yet when someone says 'have you done it?', I would say no, I'm in the process of doing it. So I think we need more trained people to take... I'm going to say take control because at that time, and still do... I'm not great at making decisions. I'm not sure of myself. I need someone to not sit back and say 'well it's really your decision' because it took me five years to make the decision because nobody was helping me to that step through fear.

Well I think, just treating me like a human being is so precious. Professionals are so busy that sometimes they don't have time to be that caring person that you know they are. Because they maybe only have ten minutes to get a certain act done and they are pushing you forward. So I think it would be good just to remind professionals that they do have rights. Why is it that they expect the person with dementia not to have a life, and to always be available when they want them to be available? And then they look at you quite crossly when you say 'I'm sorry I'm not available. I'm coming to do filming today, to do training'.

I mean, you're not supposed to have a life when you've got dementia and I wonder where they get that from, because when you've got a diagnosis of dementia your life is different. It might be you're not able to do as much (which I certainly can't do) but I like to fill my life: as the government, as the doctors, and the professionals are telling me. But once you start to do that, the professionals frown because you're out! 'When you're supposed to be sitting depressed at home, waiting on me calling you'. And I just think it's horrific!

So start realising, and don't come and say 'well I can put you in on a Wednesday'. Well I'm sorry, but I'm busy on Wednesday. You know. So why should I be any different from anybody else? The thing I want to say, to the people with dementia more so, is just to get on with your life and do what you can do and let the professionals fit in with you... you know

Enhanced dementia practice for inspectors

Promoting and protecting peoples' rights - voices of experience

Video: Voices of experience

Video transcript: Voices of experience

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