Enhanced dementia practice resource for inspectors

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Video transcript: Voices of experience

Archie Latta, Scottish Dementia Working Group

Sometimes you just get really down, you know? It's people, places and things. I've always had problems with people, places and things all my life because of my low self-esteem.

I'm now enjoying coming to the working group. I've just been to Warsaw. We did a talk over there. I think it's basically people understanding the illness you suffer from. It's not a cop out, it's an illness, a mental illness that's centred in the brain.

I enjoy coming to the working group and being part of it rather than the isolation that this illness causes you as well, you can feel so alone at times.

Agnes Houston, Scottish Dementia Working Group

If I want something badly enough I can't expect professionals to provide it. I have to sometimes say to my friends or to the people there: I am struggling. I would really like to keep going, but can you help me? Is there a way round this? Can we think outside the box, for want of a better way to make this happen and that's what it is. So I don't have carers in my life but I certainly have lots of dementia 'angels' if you like, helping me...

...at the beginning when I was diagnosed there was a lot I could do, but without being supported, without that constant egging on for want of a better word... my confidence isn't that great so I need these people in my life to be able to live. I did think six months ago that I would go into the house and shut the door and just be safe, because I need to feel safe and secure. If I don't feel safe and secure, that's a big frightening world out there even without dementia. Add dementia into that and it's really scary.

I walked up to the Coatbridge College this morning and my daughter had been on the phone last night, now I was all prepared for going and I woke up this morning and I didn't know what day it was. I wasn't quite sure if it was today I had to do the College and I wasn't sure of anything. And that's a scary place to waken up to in the morning.

But I had to take that giant leap of faith and that's what my daughter says I do a lot. I have to trust that the things are in place, everything is going to be secure. I have locked the door. I don't have to go back for a sixth time. I have to have a tremendous faith that I'm safe and secure and what have you, but I did think that I was going to go into the house and not come out because the big world was too dangerous for me and I could no longer cope with it. But I'm still out and about (laughs). Well my gym is a supportive environment. It's not the professionals that made it that way; it's the girl that will say 'good morning Agnes, it's a lovely day isn't it?'

Greeting you by your name makes me feel safe and secure. People who look out for you, that's just genuine niceness. But a supportive environment- because I have vision problems, and I have balance issues and hyperacusis with my hearing with my dementia, I'm now needing a bit more extra support - to see properly, to be able to identify and make the place safe for me. So good signage... Just before we came in here they were admiring a beautiful cup and saucer - fine bone china, made to be dementia friendly - and they said to me 'isn't that lovely Agnes?' and I said 'well it wouldn't work for me' and they said 'why? Two handles, absolutely stunning'. I said 'well there's no contrast' and they said 'I'll have to let them know.Because they don't have dementia. I mean, it's so blatant to me. How do they not know? Because they don't have dementia. Because it's not a constant living reminder that they have.

I remember when I was sitting in a taxi, a black cab with black seats and when I landed on the floor the man thought I was drunk. I couldn't see the seat, black on black -are you kidding me? And I explained to him and he said I'll get a tartan rug and any time I see you I'll put the tartan rug on the seat so you don't fall down. So it's letting people know and explaining things, and giving them your solution if you like. It doesn't cost lots of money to make things that wee bit easier, so when you see the challenge you look for a happy humorous solution.

Caroline, National Dementia Carers Action Network

The important relationships in my mum's life have changed quite dramatically since we lost my dad, because she saw my dad every day. I visit every day. I've visited every day since things happened and life changed.

I can't honestly say she has any friendships, in the real sense of the word. There are twenty nine other residents in the care home where she is, but I can't say hand on heart that she has any friendships.

The friends that she had are ten miles away and she doesn't see them. I understand their reasons why and I'm not criticising because life is busy.

Essentially it's her family. My sister and I visit. My children were always involved in my parents' lives on a day to day basis. We went to see her yesterday for mother's day and that spark is still there with her grandchildren... so in terms of relationships, it has shrunk big time.

Environmental support is something that is really important to me, both from a personal and professional perspective. Part of my background and my career, I worked around environments: lighting, colour contrasting. There's lots of similarities with people who had sight problems but the parallels are very close for people who have dementia as well.

We need to make it simple. We need to make the environment something that a person understands as opposed to trying to teach them something that's new.

My dad actually, before he died, inspired me to do something about dementia friendly communities. I live in Bishopbriggs. We were brought up catholic and my parents went to church every day.

As a result I spoke to the parish priest and spoke at all the masses one weekend in November, in fact it was ten days before my dad died. And I believe it was his legacy. It was essentially saying to the church community that there is potentially somebody sitting beside you who is really struggling. You might not know it. So we need to help people become more aware of this illness because more and more people are going to be affected.

I spoke to the local hairdresser, the school became involved. We got the memory bus from Alzheimer's Scotland. They had the highest number of people going onto the bus asking for information. It's really simple, and since then there been one of the reminders - the 'dementia tips' - in the church newsletter.

People are still approaching me since my dad died saying this has really helped me and it's really simple. Now all the schools have joined in. It's one of my passions to make Bishopbriggs a dementia friendly village and that's my dad's legacy.

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

Informing and promoting person centred, family oriented care and community connections - voices of experience

Video: Voices of experience

Video transcript: Voices of experience

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