Enhanced dementia practice resource for social workers and other professionals

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Video transcript: People living with dementia

How should social workers and other professionals support your rights?

Agnes - So I think it would be good just to remind professionals and the people 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 get on with your life and do what you can do. And let the professionals fit in with you.

Henry - Human rights, that's really got to be explained to you. And I mean in laymen's language. Some of these documents- it's fine if you are a lawyer and you can understand them. But if you are a lay person, like myself, then it's very hard to understand.

Can you give examples of when someone with dementia may need protection?

Peter - Well that could cover a number of situations. If you are on public transport for example, and you forget when you have to get off and you arrive in a place where you didn't intend to be, you could be in trouble and you will need some protection there.

For example, if I'm going somewhere I break the journey down: leave home such and such a time, arrive at bus stop or train station. There might be maybe six steps and if something goes wrong at step three, then the whole thing is up in the air. So that's it, but there needs to be somebody there. So if you've got a phone number you can call, that's fine.

Other things? Formal responsibilities like renewing television licenses and things- I just forget to do that. So my family have taken over that really. Most things that I have to pay, like fuel bills et cetera, are done by direct debit. So that takes care of that. But I forget, I just forget about these things. So somebody to make sure that I'm not being ripped off. That's it basically. I can count- I'm not daft, I'm not naive. But I just forget.

What advice can you give about how best to respect the rights of people with dementia?

Archie - Well I would like them to try and understand the illness that we suffer from. Don't dismiss us, because that is the worst thing that you can do to anyone with an illness, especially dementia, because you know it does your self-esteem no good, you feel put down and you feel lost and you feel alone. You feel vulnerable if people just dismiss you.

Treat us as a person- an adult and not a child. If people treat you like children it's really bad, it really is.

Video transcript: Carers of people living with dementia

How should social workers and other professionals support the rights of the person you care for?

Amanda - Again I think that it's important that people get the information at the beginning, when they first have the contact with social work. And that they explain things.

I think it's important to make sure people... In my experience again it was always as if it was going to be a huge problem if you were going to go for power of attorney and guardianship and it was made out to be a big thing with lots of paperwork: really time consuming and you'll have to go through a lot of different people to get this. Whereas that's an important part of what you're facing because you know you're going to get to a point where you might need to make a decision about living arrangements and financial stuff. If we had got to that at the beginning when my gran was still able to tell us I'm sure she'd be able to say that she would be happy for my mum to take that on board and look after all of that for us. Whereas we had to fight, get a solicitor involved, get my gran to go down there and try and ascertain if she had capacity to tell us.

So I think there's a big time delay a lot of the time in getting this information. People don't realise what kind of benefits are out there or what benefits the person might be entitled to, like we didn't know about the council tax benefit for people with dementia.

So different things like that you don't know about or you find out through word of mouth or from speaking to somebody else. Whereas I think the social worker can tell you all that at the very beginning or even give you a pack with information about the rights you've got. Even now with all these new standards that have come in- so you know that you've got some kind of power, because sometimes you do feel as if you've got no control.

I mean you've got no control over the actual illness but if you can have some control over what is happening that would probably make, well it would have made us feel better. Definitely. But you feel like you've lost the control.

So if you were able to get all the information so that you can make the proper choices because even then again, you are having to make decisions and it's hard. You know you're sitting there thinking 'what do I do' and you don't know, and you don't have all the information or you don't feel you can approach somebody to ask questions about it.

I don't know if it would be worthwhile if there is some sort of group you can go to that was specifically about the rights and the benefits to start with and then you can discuss it with other people and have time to ask questions if you're not sure about things. I definitely think it's important, whenever they have their first contact with you; whenever it is down the line of the diagnosis. If they are diagnosed early, it would be great to have it at that point.

How should your right to information, recognition and participation be respected?

Jeanette - Well I think that is a two way thing. First of all the information has got to be there. We've got to be made aware of it. And then a two way dialogue. To be successful that means listening again, taking on board what the person is saying and then moving on from there and together maybe jointly achieving an outcome.

Can you give examples of when the person you care for or another person with dementia may need to be protected?

Lorna - I think people need to be protected from their own illness. For example, my mum went to the hospital through a fall she had in her nursing home and it was so difficult trying to get established staff into the mode that my mum had dementia.

You were constantly saying from the receptionist, to the x-ray staff, to the nursing staff 'look, my mum has dementia. She can't answer these questions. Come and speak to me I'll let you know what she's about'.

Her different pains that she has- she can't tell you but she can actually do it primitively. In that if she was sore, if you moved her she could locate where the pain was as well as non-weight bearing sort of thing.

But also as well, my mum's diabetic. So had it not been for the fact that a junior doctor went and got my mother a sandwich she probably wouldn't have got anything to eat either. So it's a part of actively knowing the person - and when you care for them you know them intimately.

Enhanced dementia practice for social workers

Rights, support and protection - living the life

Video: People living with dementia

Video: Carers of people living with dementia

Video transcript: People living with dementia

Video transcript: Carers of people living with dementia

Questions

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