Enhanced dementia practice resource for social workers and other professionals

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Video transcript: People living with dementia

How can a social worker or other professional best support you to understand the dementia you are experiencing?

Agnes - There was no emotional support. There was no, what I would consider support. So what could they have put in place?

Well, maybe introduce me to people in a similar situation. To hear it from people who have gone through it before would have been a great asset to me. Because I always thought it was people like my dad, who was much older, and my mother in law, who was much older. I had never met anybody under the age of 60 with dementia. Actually I don't think I had met anybody under the age of 70. So, meeting others with a diagnosis and just being there for you constantly. One person; a familiar, comfortable face. Instead of that there was nobody who I felt that I could have asked questions as and when I needed them.

So yes; good information, and information that you can dip in and out of as and when you need it. Not overloading you, but as you're getting tripped up or it pops into your head you know. Certainly if I'd have known about the 24 hour helpline that would've been a great asset to me, but I thought Alzheimer Scotland's helpline was only for carers...

Henry - The best thing that could happen is if there was somebody else there with you. Whether it's your wife, husband or son or daughter, it is better having somebody there. They might be able to explain it better to you. But, for nobody to be there it's very difficult for someone who doesn't understand what dementia is. That was one of the things; they didn't explain to me what vascular dementia was.

The other thing I think they could do is give some information, an information leaflet to maybe explain what vascular dementia is. I think they have got to get it right first of all. If they don't get it right first of all, then it causes problems later on.

I think for any newly qualified social workers; I think it's compassion. They've got to be able to listen to what the person is saying, treat them as an individual. They'll get more out of the person if they talk to them in the same kind of manner as they would talk to anybody else.

What are the best forms of support a professional can offer you in coming to terms with your dementia?

Peter - I think from a social worker I would expect someone who is trained, and not programmed to act in a stimulus response basis. You know, he's doing this so therefore we must do that. I would expect someone to listen to me, that would be the best thing. Listen to me, because everybody's an individual and I've found since I've been coming to Alzheimer Scotland that everybody with dementia has a different set of problems. A lot of them overlap obviously but dealing with the GP, the practice nurse and various other people I see; it's as if you are treated as part of a huge homogenous lump- which we're not. So that's all, just individual. See me as an individual and what my individual cares and troubles are.

Video transcript: Carers of people living with dementia

How can a social worker or other professional best support you to understand the dementia the person you care for is experiencing?

Diane - I think the first challenge with social work is actually to make them known to people, to make them known to the families.

The challenge we had was that we didn't know if any intervention was appropriate from social work. And, we went for probably about four or five years without any social work intervention at all. We did everything on our own. I couldn't have even told you what a "CPN" was, never mind what it stood for but actually what they were there to do.

So social work, the first thing is being introduced early to the family. You have to bear in mind about dementia- you can't be selective about who it affects. Therefore the people that it does affect, they're not always aware of how all these processes and how all these people work.

The other thing is that we are very proud people as well. We have coped very well without any support from the state over the years so to admit that you need help from someone else (some pen pusher as my dad always used to say) is very difficult actually, to acknowledge.

So visibility at the right point in time is the first thing, and the second thing is just acknowledging that one size just does not fit all. As I said my dad is a very proud man and to allow anyone to come in and talk about our situation or even offer any support for him, never mind my mum, is a very difficult step. So it's not just a case of having a check list and saying I've done that, I've spoken to that man and that lady. It's the people aspect.

If they can get round the thoughts and feelings of the people that they are going to go out to meet and work with - I think that's the biggest piece of help that they can give us.

What are the best forms of support a professional can offer you in coming to terms with the dementia the person you care for is experiencing?

Lorna - I think it's important for social workers to appreciate that the services that are available- respite services essentially- are a realisation for carers that they are needing help. It is not as a derogatory thing. It's something that they are aware of; that they need time out from caring and the caring element. And from that they can get the energy to recharge, to try and continue the care. So I think where maybe some people in the past have thought about respite services as a negative thing, it should be adopted as a positive thing; because it does allow for time out, but it also allows time out for the carer which is important. A lot of the time the person with dementia is oblivious to the needs of the carer. So these time out sessions are important.

The other thing that is important is that I had a beautiful social worker who gave me personalisation, in that we got personal laundry, and from that we got three pieces of items daily washed and laundered by the local services. And that essentially gave me time out to care. It gave me time out to take my mother out to society which is very important- to be part of the community.

So I didn't need their four times a day care as a total care package, I was doing her personal care. That's where you need the variables. You need these things that are a wee bit different, but that are effective.

How would you describe your feelings as you recognise changes in the person with dementia you care for?

Eileen - My feelings were strongest at the start, because I was absolutely devastated. I felt totally helpless in terms of what to do. But fortunately there is so much; I've been on very good training conferences and things like that where I realise that it's his world that I'm living in now. It's like going to a foreign country; you know, if you're against the culture you won't fit in. That helps me realise that in fact it's his world, if he wants to go and put a box of chocolates on the bird table- which he did- just let him!

Enhanced dementia practice for social workers

Understanding dementia - 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

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