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Video transcript: People living with dementia

Can you share some experiences of the peer support you have and how this contributes to your sense of wellbeing?

Archie - I enjoy coming to the Working Group and being part of it- rather than the isolation that this illness causes you. You can feel so alone at times.

Henry - I joined the Scottish Dementia Working Group and it was fantastic. There are people who have got the same things that I've got. We all support each other.

I think that's the good part of dementia; you'll always have somebody there. I'm fortunate, I've got my wife and I've got my - well, they're not children now, they're thirty years of age - but they look after me. They look out for me. They are always there. Each day I'll get a phone call from at least one of them, just to ask how I am.

That's how it's affected me but I'm more and more outgoing now. I was always a confident person. I'm what they call a 'people's person'. I could talk to anybody. That was part of my job. Rather than lock somebody up, I'd rather talk them out of it. Really, that's just me. It's just my nature. Since I've got this, it's given me a new outlook on life. I know there could be problems later on, but my family know me now and that's what I'm happy about.

Can you tell us about a time when you have faced challenges when in a particular environment?

Agnes - Travelling is not easy and it's horrific when you've got dementia. If you're not given enough time to take information in, assimilate it, and then respond. They want instantaneous stuff.

So we, my daughter and I, we were going to Brussels for the European Dementia Working Group and the people who organised it didn't leave sufficient time between the flight connections and the transport airport people wouldn't listen to what we were saying. So consequently we lost our flight.

So on the way back we thought we would get assisted travel. We thought 'this is it we've found the solution so this will be great'. Nancy from the group was by this time with us, so my daughter was supporting two of us, and they wouldn't let my daughter travel with us on the assisted travel.

So Nancy's face was a picture, because people with dementia when they are stressed can become very aggressive and very stroppy and really act out of character- through fear. I remember Nancy's face and Nancy demanding in this polite voice banging on the counter and all these other people looking and they were looking because we were not physically disabled according to them. You see. In my head I was saying I wish I'd bought my white pointy stick, and maybe they would have been kinder to us. By this time we'd had all this drama. We even had the pilot standing you know trying to resolve it and they still were adamant Donna couldn't go on it. So Donna my daughter was running after us trying to shout words of comfort to Nancy and I was with Nancy trying to get off this trolley and that's the kind of stuff that happens you know.

So when I came back I bought it to the European Dementia Working Group and said we need to highlight these issues and maybe make it easier for carers for people with dementia for example on how to fill the forms out so that the carer can go with the person, because there's no point in separating us. You can just imagine Donna getting the flight and us being left, or us getting the flight and Donna getting left! We would have tried to escape the plane!

They were creating a problem, and that's what they don't understand. So we have had a lot of issues with travelling to and from conferences. I've bought it back to the group and we've got a small sub group and we are trying to look for solutions. People don't want to make things difficult for you but we need to train them and help them to help us have a safer journey.

As I say, because of this hyper acusis I have a terrible reaction to loud noises and I'm overwhelmed by loud noises. Life is full of loud noises so sometimes I have to remove myself from very noisy places because it is causing distress to my brain. I can't concentrate because of the noises. Even the gym is a very noisy environment. And don't even mention hospitals, don't even go there. Thank God I try to stay away from them. So it's trying to keep things within reason.

What environmental support have you found useful in everyday life and in maintaining your independence and wellbeing?

Peter - So the locality worker (social services) gave me a doorbell, and it's one that lights up and you can't ignore it and I know what it's about when that goes off. The other thing is leaving the door open at night when I go to bed. I don't do it often, but you only have to do it once at the wrong time really, so there's a chap coming to see me tomorrow... or I think it's tomorrow. It might be next week, but I know that he is coming anyway. So there's a device that they can put in place and it uses your own voice, and after you have opened the door if you haven't closed the door quickly it tells you 'close the door' and so that is a big help as well. So we'll see how that goes.

Agnes - Well at the moment I've got a brilliant thing because I was forgetting to lock the door. My locality officer got me a thing which is my voice, and when I go through the door threshold (I've got two doors) before I go through the second door it's my voice saying 'lock the door' and I automatically lock the door. Which is absolutely amazing because I locked my daughter out. She doesn't live with me but she was supporting me and I go in and she's in the car and it said "lock the door" and I locked the door and hung it up and it wasn't until she phoned me up on the mobile and she said "Mum! I'm outside with the messages, at least it works!"

She was absolutely enthusiastic about that. I will need that, more and more. Thank goodness I have got it now and it's not in the future. I think you should be putting it in before we need it because it takes me a long time to get used to and comfortable with something new. New isn't good for me, so I need to get it before I actually rely on it. I have a kettle now because my daughter (when she was home before) noticed I was boiling the kettle that many times and she was wondering how there was still a bottom in it. This new kettle does one cup only and it lights up and makes a noise when it is done, so there are lots of adaptations.

I loved when I looked out there and there's the day and the date and I can't remember the other thing, I think it was an old fashioned clock. So things like that I would need, and just constant reminding. Not everyone with dementia has a carer or a partner, or a loved one at home. I live alone. A lot of people in the working group live alone so we need prompts and aids to remind us more and more.

I don't have my oven; I've got a halogen glass one and I've got to lift it out, put it up, and stand and concentrate. I can see that I am needing it more and more- I'm relying more on more on what was a gentle reminder. Now it's almost as if it's a need- a great need- and that is emotionally quite traumatic; to know that you are becoming more needy and more reliant on things- on physical things- for your day to day life. It can distress me quite a lot, when it suddenly comes to you that you can't do without it because without it you just wouldn't be able to cope.

So yes, I think, in this modern society and this time of all this technology I don't think we are using enough of it to make life, for people like me, easier. I don't have a lot of technology. In fact, I'm losing a lot of my technical ability because I'm not being helped to keep it up. And there are wonderful things out there. The children, three and four year olds; I was sitting having a coffee and this child was doing something and I started to speak to her and this wee one was showing me lots of wonderful things on this big screen thing. I thought 'why can't we have something like that for dementia?' You know, with big icons; you can make them bigger. She was showing me, and you know she wasn't even at school yet! I was absolutely amazed.

Video transcript: Carers of people living with dementia

What does the term 'supportive environment' mean to you?

Amanda - I think it just means being able to have the person with dementia live in the community and that takes on lots of different things. When you're caring for somebody with dementia you're aware of things that have changed for them and difficulties they might have but the outside environment doesn't always take that into account.

So, to me, to have a more supportive environment would be that everybody has some kind of knowledge about dementia and that there are specific things done for people.

For example, my gran used to go to the supermarket. It was just round the corner from us and she used to walk to it. She would go in, buy what she needed to buy, then she would go home and go back again later the same day and try and buy the same things; because she had forgotten that she had already been. Now luckily the girls in the supermarket knew my gran because she'd lived round about that area for nearly 15 years so they knew who she was and they knew my mum. So they were able to phone my mum and let her know that this was happening. At that point we didn't realise that she was doing it twice in the one day. So in that way, we were lucky in that sense.

There was a local pub on the corner and my gran used to call it a cafe. She used to go in there because my gran used to like a glass of red wine- all her life every night she had a glass of red wine. She always had that. She enjoyed going there. She used to go in there and in the beginning she could go in and have a glass of wine and maybe a sandwich and then she could go home again. But she started to get to the point where she was forgetting how to get home and things. Again they were really supportive. They knew who she was. My Mum had given them her number and they contacted us any time sheA was there a bit later than she should've been so we were able to go and get her. So, those are two examples of where we were lucky. But there were lots of times that she would go out and maybe we weren't sure what had happened.

How important is being outdoors to the person you care for?

Jeanette - I think it was quite important because when you're in four in walls I think that can be distressing for anyone. We were people who went out, either to work or play. Hobbies like lawn bowling, or walking, gardening- we enjoyed all of these things together.

I used to try and get Ken out. At that time I could shift him from the wheelchair. He started to walk from 2008 to 2009 and then of course when he had another operation then that was him, totally off his feet for good. In 2009. But up to that point it was very important, and I took him out almost every other day. I could get him from the wheelchair to the car with a little bit of help from him and we could get out and about - and it was good. Even just a walk down to the beach and a wee walk along to friends. It kept things quite as normal as could be, as could be expected at that time.

When 2009 came, we were hemmed in and that was a nightmare. It was twenty four seven, because he didn't have any use of his legs so he couldn't even stand on his own. It was full body weight, and that's like dead weight you know, so I couldn't get out without help. You know, people around us are all older. If someone was there it was fine, I would organise something if we had something to go to specially.

What environmental support might you find helpful now and in the future?

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

So 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 and we were brought up Catholic. 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, ten days before my dad died. I believe it was his legacy. It was essentially saying to the church community that potentially there is somebody sitting beside you that is really struggling and 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 Scotland. They had, I think, the highest number of people going on to the bus asking for information.

It's really, really simple.

Since then there have been 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 really simple information. So the schools have now become involved and one of my passions is to try and make Bishopbriggs a dementia friendly village - and it's my dad's legacy.

Can you share some examples of what you do to enhance the environment for the person you care for?

Diane - She might not be able to see very well anymore, her eye sight has been affected as part of the condition, but colour was always something that was important to my mum. Her favourite colour was purple, so her whole room has been done in purple. Every time we buy something for her we try and make it purple.

But also, scents and smells and tastes - so we try and make sure that we take up all of her favourite foods. She was a right curry queen so we always try and take in some curries and things like that from time to time. Nice fresh flowers and also just things that she can touch. You know textures and things like that which are familiar to her that she can enjoy as well.

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