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  • What does it feel like to live with dementia?

  • The experience of living with dementia is often a challenging one.

  • The more people’s emotions and perspectives are understood, the better they can be supported.

  • This film introduces four people who are able to share their insights on living with advancing dementia,

  • insights that were filmed over time, and which were not always easily communicated.

  • I wake up and I feel afraid to get out, what am I going to face today, what’s going to go wrong.

  • Because I’ve always got this thing in my, well, often get this thing in my mind to say, youve done something, youve broken something,

  • youve lost something, you aren’t any good to anybody, why are you here, I get that a lot.

  • Oh it’s awful. You get to the stage where you don’t want to talk to people in case you repeat yourself.

  • I couldn’t go outside and go to a shop or something,

  • I’d die, well I couldn’t do it.

  • I used to do alright one time,

  • but it seems to get a bit harder and harder every year.

  • You end up with things like this.

  • Well you don’t feel as if you are in the world. At least I didn’t. I didn’t feel as if I was part of the world.

  • Yeah, I used to have fun.

  • It makes you feel defeated. What good am I in this world, I’m doing nothing. More than sit down here and be fed

  • and be fed and sleep, washed and, like an animal.

  • Let me live.

  • Barry has lived with dementia for more than fifteen years. He is aware of the changes within his life

  • and is still both able to articulate this, and importantly, express how he feels about it.

  • Well when I came home last night, and I went out Ange said she wanted a cup of tea and I said

  • I’ll make that one minute. So I went out and made the tea, but I couldn’t remember which cupboard

  • was which, couldn’t remember where the jam goes, where the sugar goes, where’s the milk,

  • where’s that. And I was like this for a minute or two, is this my kitchen?

  • I used to manage butcher’s shops, I used to run a care home.

  • I used to drive all over the country giving lectures on

  • meat, here I am, I can’t make a cup of tea.

  • Olive, who has lived in a care home for two years, describes her feelings about dementia.

  • Awful. It’s terrible. Because youre hurting the people you love most, dementia.

  • You really are. It makes you feel very guilty.

  • Bob has received full time care for two years. He talks about how dementia has changed his life.

  • In a word, concentrating. I can’t seem to concentrate on one thing for very long.

  • I don’t think you realise how it hits you.

  • Bob’s symptoms include hallucinations and mistaken beliefs, which his wife Sally explains.

  • When he gets hallucinations, theyre extremely real to him. He sees things that aren’t actually happening.

  • Weve had problems where his room’s been on fire, and he’s had to get out.

  • Shortly before Bob moved into a care home, there were two occasions when he found himself on the roof of his house.

  • Twice I got up on a roof, walked across the roof of a house.

  • I don’t know what made me do it. That’s the difficult part, you can’t explain it.

  • All you can say is it’s happened, and you did it.

  • One o’clock in the morning, it’s quite frightening.

  • Judy was diagnosed with dementia eleven years ago. She experiences problems with visual perception and is often disorientated.

  • Where am I here? I know who I am -

  • - I’ve got that one down. - Where are you here?

  • Yes, no, what place is this place?

  • Judy’s daughter Karen knows her mother so well that she understands Judy’s needs and feelings even when Judy can’t find the words.

  • She wants to express herself in ways that she just can’t anymore. She wants to do things that she just can’t do anymore.

  • But because she still has a little bit of insight, it makes it really difficult

  • because she still knows the things she wants to do, but she just can’t do them.

  • - Why are you sad mum? - Looking back, looking back.

  • - Looking back? - Yeah. - Why does it make you sad looking back?

  • Oh, I don’t know. Probably I shouldve done other things.

  • Just, you can’t do anything about it, that’s the thing.

  • People can feel powerless in the face of dementia.

  • Well, it’s like a silent illness isn’t it. It’s the sort of thing that creeps up on you.

  • Yeah, there is a feeling of loneliness.

  • Well, dementia stole in. I had no understanding that there was coming

  • this thing that was going to attack my mind. I had no idea that

  • anything could attack my mind if you know what I mean. Other people yes, but not me,

  • didn’t occur to me that it could happen to me. And it’s just like a persistent spy almost,

  • someone who is not recognisable. But his effects are, what he leaves behind him and what he’s implanted, are noticeable.

  • Dementia is sometimes portrayed as taking away a person’s identity. Judy was asked if she feels this is true for her.

  • Oh, doesn’t, you are what you are, well with me, I’d be the same, exactly the same as I am.

  • I’m sorry, it’s still me, it’s still me.

  • It’s horrible, because she was so young being diagnosed with Alzheimer’s, but then you know bits of her do still shine through

  • and she still is my mum.

  • Barry is also clear on this point.

  • Yeah, I’m a man, it’s me. And I am me, I’m my wife’s husband, I’m my son’s dad.

  • And it seems to me that most people, ‘oh she’s got dementiathat’s sort of like a full stop.

  • End of sentence, end of discussion, ‘she’s got dementiaorhe’s senile’.

  • Supportive relationships with families, friends and professional carers

  • play a key role in helping people with dementia live well.

  • Theyre very caring, and I get big hugs from my husband, my children. Andthat’s alright mum, you forgot something,

  • that’s all, doesn’t matter, here we are’. And it’s all sorted out again. (laughs)

  • Well, theyve just got to stay here and help me. Just to be.

  • - Always been friends as well. - Yeah. Friends before the romance, so I think then you

  • do stay in a loving relationship because the depth is there, isn’t it.

  • But he’s still the Bob I fell in love with, and I still love, he’s still that person underneath everything.

  • For people with dementia, as with any individuals, empathy and support can help to retain their sense of identity

  • as well as enhance their wellbeing and quality of life.

  • If I could say one thing to somebody who’s got dementia or a carer, it would be

  • probably, hang on in there, because they really do need you and they have feelings and totally understand what youre saying.

  • And one thing, if I walk into the room and Mum can’t see me, she hears my voice

  • within a split second if I say hello to somebody, she knows that I’m there,

  • and it means so much to them.

  • (to Judy) Hello. Hello (laughs)

What does it feel like to live with dementia?

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Living with dementia

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    Yishuan Chu posted on 2014/11/18
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