Enhanced dementia practice resource for social workers and other professionals

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Video transcript: People living with dementia

How important is living well with dementia, and what keeps you healthy?

Henry - It's more so because of being diabetic, to makes sure I take my injections- I take four injections a day. I also take tablets for various things. I've got to make sure I take these. So, with the tablets, I've got them signed as well then I know exactly where they are and to take them. I take them first thing in the morning and I take them last thing at night.

I've got to be healthy. I think it's a part of me. I've always liked the outdoor life. I like getting out and about. I like holidays. I'm not a person who will normally sit in the house and do nothing. I've got to be doing something.

How would you expect to be supported to maintain your health and wellbeing?

Agnes - I've got what they call a 'locality officer'. She's not a social worker as far I know and this is relatively new. I'll explain it to you: what happened was, in the area where I was there was nothing for people under the age of 65 and I was very angry as I explained in the beginning. I remember going from health (because they weren't linked up) and saying 'what can you provide?'

'Oh, we monitor your medication'.

(But if I was schizophrenic or anything like that) you're telling me that I'm mentally ill because it's a mental health condition, but you're not going to give me the mental health support because it's dementia. I've got to go with the nurses. I said 'this is against my human rights'.

So I was invited to the local social work department. I was very tearful and I just put it to them. I said 'this isn't right, all my life I've worked. Nursing and various things like that, and you're letting me down. The system is letting me down.'

So anyway, they came to my home and they spoke and they did a wee pilot and I was the first one, and I got a locality officer and it's been the best thing that has ever happened to me. This girl came to my house and she got to know me, and that was how I got my power of attorney. She didn't know anything about power of attorney, so I taught her and told her. Together we went through it and with her encouragement hey ho it was done. It almost became very clear and we done all of that and that happened.

So that, getting a named person. Mine is a locality- she's not health. I think it's just someone who knows what's in the area and can signpost you there. But signposting isn't enough, sometimes you need to be taken the first couple of times so you know how to go and the various things like that and you're comfortable so you've got to be comfortable with that person and that person has to be comfortable with you, so that you can phone up as and when you need it. So that if I get an infection and it's really quite bad, my locality officer can be told and I let her know and then she can set things in motion if I need it. So that if a crisis comes up she already knows me and I'm already on the books. That's good.

I asked her - they deal with people who are under 65- so I'll be 65 in October so I'm changing my consultant, and I was assuming I was losing this and she said 'oh no no, only if your needs get to the point where we no longer can help you, then that's when the service will change but we wouldn't withdraw totally' and that's what it is- it's mixing together. It's where you can see maybe if I've to get handed over maybe to someone else because my needs are different it's working together so it's a transition rather than a crisis and that's what I would be looking for the future, that people would be looking and making it a smooth safe journey where you're making transitions just smoothly and not just this ups and downs and ups and downs and crises and causing distress and anxiety, you know.

What contributes to a sense of wellbeing in your life?

James - Well I've met an awful lot of people with dementia. What I've noticed is that the ones that keep a sense of humour are the ones that seem to do better. People who moan and groan tend to deteriorate that wee bit quicker. Sometimes people say 'have I got any regrets?' Well, I've forgotten how to do dishes. I stand and I look and I think 'I don't know what to do' and my wife shoves me and says 'get out of my road'.

So it's a big loss in my life, forgetting how to do that. And the hoover, oh! Complete mystery to me. I'd be willing to learn again but the trouble is you forget so easily. Five minutes later you've forgotten and it's quicker for my wife to hoover than to try to tell me again. I'll take tongue out of my cheek...

Video transcript: Carers of people living with dementia

How would you describe the quality of the health and wellbeing of the person you care for?

Caroline - My mum's health and wellbeing right now essentially is controlled by the numbers of staff who might be on shift. That's just the truth of where things are right now. Her health, her mobility, isn't great at all now; she has to have support to walk.

Her wellbeing physically? She's quite strong. She's tiny now, but she's got a strong spirit. That's another aspect I think is really important to health and wellbeing- my mum had a spiritual connection with her church in the past and that has stopped again. So there are so many things I think we need to be looking at (that again are very, very easy but we complicate them) to support a person's health and wellbeing.

It's how she feels about herself. She's very content in herself; she's content and happy when her family are round about her. But again, because many care homes focus on the health aspect, the social aspect needs to find that balance in order to maintain a person's health and wellbeing. What contributes to the quality of your own health and wellbeing as a carer?

Jeanette - Well someone one asked if they could interview carers about the impact on them and I actually thought that I'd have to go to my family and friends and ask them how they perceived me to be, because I wasn't quite sure of myself.

You lose yourself, there's no question about it. It sounds pathetic I know, and it's not meant to be because your loved ones still there and you're thankful for that and you'd do the same again- I would do the same again, that's not an issue. But you just had to come to terms with the fact that the hardest thing of all, your health is impacted because you are seeing your loved one day by day disappear and things happen and the sad look on their face (although that's a mask that can come as well you know).

I did overlook things, I didn't take my tablets when I should have, and I didn't get sufficient sleep and I didn't eat properly. Because sometimes, there was two carers four times a day and many changes so it was repetition, repetition, repetition: this is the routine, this is the colour coding, this is what you do here, this is where you go there, this is how...

And there just wasn't much time at all throughout the day, so come the evening time when they came in and sorted him and went away about half past eight I felt, you know I'll never get a paper read, I might just have a cup of tea then and have something to eat. So I didn't have any outlets, because well it would have meant bringing somebody in.

The only thing I did the last year or two was the church guild. I didn't even go to church on a Sunday morning, because I couldn't. It meant someone coming in. Once or twice I got someone in, but I felt so bad. So to get out at night I would have to get someone in, so one of my friends whose grandchildren are in Glasgow - she's freer than the rest. She would come over with her friend and they would let me go to the guild for a couple of hours but that was probably only five or six times a year, because I didn't go to this one or that one, you know.

What kind of support has helped you to maintain your own health and wellbeing?

Lorna - I think it's important that social services have a cognisance of the fact that when you are looking after somebody with dementia, that your mental health will suffer. That is a fact. I have suffered. I openly admit to that.

But the thing with it as well is the fact that you are suffering is recognition that you care. The important thing about it is that you have the control over it. Sometimes you actually feel yourself that you have dementia, because you are living the life. And you're not yourself. You might think you are but you're not. Other people can look at you and maybe actually say things to you in such a fashion that they're trying to be helpful, and you'll take it the wrong way and it's because you don't want to admit to defeat maybe. But also it's maybe another recognition that maybe you're not coping.

I'll speak to other people and I'll speak to anybody that will listen to me because I'll tell them, that even if you're upset and you cry, it's ok to feel that way because then at least you've got a take on what your life is like. It then becomes a problem when you don't realise the effect that someone with dementia is actually having on you. That's a totally different thing as well.

So it's imperative that you seek out support. I've actually phoned the dementia helpline at four in the morning because I got to the end and I didn't know where to turn. I knew the different organisations; I had all the information and the leaflets in a drawer. I was doing the care 168 hours. But I still needed help and I knew I needed help, but that became a recognition in myself that I needed help. I went out with a torch and I had enlightenment because that light showed me the number of the dementia helpline which was in my car - which I'd been running about showing the community, showing the world, but I needed that at that time. And I went and I phoned that helpline and I poured my heart and my soul out for two hours. And like that, it's a helpline. It doesn't give you the answers. It gives you the help. It allows you to speak of the things you are feeling but it's also non-judgemental. They can make you, or support you, to see maybe a different way to do things and that's very important.

Enhanced dementia practice for social workers

Health and wellbeing - 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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