Skip to 0 minutes and 8 secondsWe've designed this course so that we can learn together how to stay connected and live well with dementia. As well as hearing from experts in dementia and dementia communication, we ask carers to share their experiences with us. We hear from Barbara, who cares for her husband who was diagnosed with vascular dementia, Denise, who has been a carer for a number of family members and who now cares for her mother who has Alzheimer's disease, and we'll meet Leon, whose father has dementia and lives some distance away.
Skip to 0 minutes and 43 secondsLater in the course, we'll also hear from Tony and Joy, dementia friends champions from the Alzheimer's Society, who talk about their changing relationship, and Barbara who describes the impact caring has had on her own health. As well as the guidance received from our experts and carers throughout the course, I will be helped by a team of mentors who will contribute to the discussions each week. They will summarise key points and answer questions.
Skip to 1 minute and 18 secondsAlthough the brain isn't supposed to be working, and we don't know what they're taking in. We don't know-- maybe they can't get back to us and say how they feel. But, they'll maybe show it in other ways. With Jim, what sometimes happens is he'll take a dislike to someone. Now he was never like that. He was always an easy going kind of a guy, coped with anything. But that then becomes an obsession, and he doesn't want to have anything to do with that person at all. And that's a difficult thing, because how do I explain that to the person, you know?
Skip to 1 minute and 57 secondsAnd sometimes you've got to be honest with other people, because they'll come up-- Jim can sometimes come out with things that you wouldn't normally say. You could be walking through a shop or something like that, when she was able to walk and get out-- you'd be walking along and, "my, she's fat!" [LAUGHTER] Or whatever, but children can do the same, so-- My Dad will just stare at people, swear, not know what's going on, get very confused. And she's [mum's] sort of worried about what the rest of the world's thinking. Now I think it's getting a bit better, but for quite a long time, she sort of felt embarrassed, because she didn't know how to cope.
Skip to 2 minutes and 43 secondsAnd I was saying that the rest of the world's got to understand this, that Dad has a disease. As you said earlier, if you'd had a broken leg, you have sympathy. Someone behaves like that with Alzheimer's or dementia in public, and behaves in an unusual way, the world's got to understand and accommodate that. But you get worried about it. I can't have any deep conversation with my husband, because he hasn't, he's not able to function in that way.
Skip to 3 minutes and 13 secondsYou can have light conversation about the things that's going on during the day, but you know, you can't have deep conversations about anything, anything that's going on in the world, because he just, he either doesn't want-- he can't be bothered with it, or he we doesn't want to understand it, or he can't understand it, so he just lets it go. It's the same with watching maybe a movie or series on the telly. He'll say, oh what's this all about. I don't understand why these-- what's happening here. And sometimes it's very difficult. My mum got to where, I used to have to choose what was on the television, so as not for her to get angry.
Skip to 3 minutes and 55 secondsBecause if it was something like Eastenders, Coronation Street, and so on. First of all, it started with the characters who she didn't know, new characters. "Well, who's this?" "Who's that?" "Who's that person?" Because she couldn't remember, it was only the very old ones. Then it got to where it was as if they were real people in the house. Because if there was an argument going on Eastenders, "I'm not having that." [LAUGHTER] You know, she'll be, "I'm not having that, they can get out!" You know? Last time-- so my mum, around Christmas, she'd just bought a new chair for the living room. And we're walking down the street, and I was saying, "how's the new chair?" And she started crying.
Skip to 4 minutes and 43 secondsAnd, "what's up?" And she said, "you're the only person who has asked me about the chair", and she said, and "I would've talked to your dad about this, because he sits in the chair, but he's never asked me anything, because he doesn't quite understand it." And she says, "I miss that so much, just having a conversation with him about the most inane things." And it was really, really touching, that something as simple as talking about a chair had such an effect on her.
Welcome to the course
We invited carers and experts in dementia communication to spend time with Lynne Corner (Lead Educator) at Beamish Museum, in the North East of England.
Being here reminded us of how memories can help us reveal something about who we are. Together, we discussed the impact of dementia in our lives.
In this video, Denise, Barbara and Leon talk about the communication challenges they face as carers, how they are dealing with them and how they are adapting to changes in their own situation.
As well the guidance received from our experts and carers throughout the course, Lynne will be helped out by a team of mentors who will contribute to the discussions each week.
We won’t be able to offer medical advice or detailed individual support, but we will aim to summarise key points and answer general questions where we can. Please see the links at the end of step 3.2 for information about organisations who may offer support.
We want to hear from you
The more we know about what it is like to live with dementia, the better we can plan for the future. Each week, you will have an opportunity to contribute your own experience and expertise to help think through our understandings about dementia, our strategies to communicate, and the practical challenges we face. We encourage you to get involved in the discussions throughout the course.
We’ll be reflecting on your insights and experience so that, together with the latest research evidence, we have a clearer understanding of the remaining challenges and opportunities for innovation.
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