Jane Youell PhD Student How do people living with dementia, their carers and their key workers, experience and understand the changes in intimacy that accompany living with dementia Jane.youell@northampton.ac.uk

How did I end up here? Many hats……… Mum Carer Psychologist Activist, advocate, campaigner PhD Student

PhD Summary Home as intimate space Let’s talk about sex Resilience What did I find?

Sex Helps keep your immune function healthy Boosts your libido And why it’s good for you……top ten Helps keep your immune function healthy Boosts your libido Improves women’s bladder control Lowers blood pressure Eases stress and tension Good exercise Good for your heart Lessens pain Improves sleep Increases sense of wellbeing

Sex Old people don’t have sex People who are ill don’t have sex And older people…… Old people don’t have sex People who are ill don’t have sex Therefore, old ill people definitely don’t have sex

Sex Living well with dementia Improving care for people with dementia And dementia – why is that important? Living well with dementia Improving care for people with dementia Helping carers to stay healthy

Sex Normally Sleeping active Sex together life Healthy sex life What the data shows us…… Normal sort of sexual marriage Such a beautiful intimate sex life Normally active Sleeping together Sex life Healthy sex life We both enjoyed our sex We’ve the most wonderful, wonderful sex life Really good marriage, you know sexual everything Good sex life They just have sex don’t they, they don’t make love, we always made love The intimate side of life We had a jolly good run at it!

Sex The importance of a double bed ‘We used to have a double bed, we used to go to bed together and get up together, you know. (Mr B)

Resilience Everyday intimacies….. Oh yes, funny enough we do go out to Morrison’s. I do have a system where I go around about 5 o’clock and do a shop with Rita then have a meal. She has a chicken tikka masala and I have a fish and chips or ….and it suits us well because the meals aren’t very big so I suppose in a way we still going out to a restaurant although it’s a bit limited. But there you are (Mr B)

Sex Loss and lingering….. It was, fortunately it had been changed that week and as I say he never, ever wet the bed and I can’t change his bed and I go [getting teary] in ever night and lay in it and talk to him and this is what people don’t understand you’re still living, you’re still living that awful loss the whole time it’s not just you go in and see them and leave them, it’s hard for people to understand that you’re grieving the whole time (Mrs C)

Sexuality and care Accommodating needs I suppose I never got over the fact of finding him getting dressed up in ladies clothing in the bedroom, a wig on, makeup, high heels, I…..that wasn’t George (Mrs F) I’ve caught him dressing up, oh right, put it behind you, don’t say anything, but having to keep all these secrets isn’t easy (Mrs F)

Sex and consent Is it still ok? Well I would say that Vera’s more, she appreciates it more now than she did years ago, so I don’t see any change, other than she seems to enjoy it more but I think that’s because she’s relaxed and has no inhibition in any way. But otherwise it hasn’t changed in any other way either in frequency or intensity but I think it’s a little more intense now I think (Mr Fr)

Mental Capacity and the law Five guiding principles Capacity must be assumed unless proven otherwise. All practical help and support must be given to assist the person to make a decision. Capacity is not assumed to be lacking because a person makes an unwise decision. All decisions made must be in the persons best interests. All decisions must be least restrictive to his/her rights and freedoms

Sex and consent Is it still ok? Well I would say that Vera’s more, she appreciates it more now than she did years ago, so I don’t see any change, other than she seems to enjoy it more but I think that’s because she’s relaxed and has no inhibition in any way. But otherwise it hasn’t changed in any other way either in frequency or intensity but I think it’s a little more intense now I think (Mr Fr)

Sex and consent Is it still ok? the last time we had sex was on holiday three years ago that doesn’t mean that in the months following that I didn’t try to have sex. I’m still viable despite what young people think…. But either I got the feeling that I mean the desire for sex had gone and I always tried to give as much pleasure as I got and when I didn’t see the pleasure exhibited and then if I petted her she would find it funny she wasn’t sure why I was doing it so it’s like if you can imagine you’re trying to be romantic and your partner laughs it’s not exactly conducive to romance and that it went from disinterest to what are you doing to stop it and so I think I probably made some effort for a year or so after we had sex the last time (Mr J)

Sex and consent Is it still ok? the stage at the beginning is worse when you didn’t know whether you were still spouse or carer, soon as you were carer, you were a carer, 100% carer, 0% spouse, then you knew where you were (James)

Sex and consent Is it still ok? Edward was always very, well, yeah, you know, quite highly sexed I suppose you’d say, sort of, I mean take it or leave it, its just for men, what’s really strange is that he still, he still feels he wants that, which is really strange I find (Anne) And how do you feel about that? (Interviewer) Well…its…I don’t like it, it doesn’t seem to be him….its…its I feel really si….it’s horrible, and that’s an awful thing to say after a lot of years (Anne) And then I, its really funny because you’re battling with yourself, and I’m thinking he hasn’t got a lot; he hasn’t got a lot going for him, and if it pleases him and it gives him…and if he thinks he’s doing what he’s doing, you know, I’ve gotta go with it, I’ve gotta do it (Anne)

Love and dementia Mrs P: We still have our cuddles and kisses and ….. Jane: You are very affectionate with each other, you touch each other quite a lot Mrs P: Oh yeah we sit there of an evening Mr P: We had plenty of love making years ago to remember Mrs P: No, it was good Mr P: I’m too old now anyway [all laugh] Mrs P: He says I can’t remember how to do it [all really laugh]

Love and dementia Mrs C: Having our kisses and cuddles without sex really and truthfully Mr C: Oh I love to cuddle you Mrs C: I know you do Mr C: Well Mrs C: It’s not the same thing Mr C: What then Mrs C: I think he’s forgot that bit Mr C: Oh no I haven’t tell me Mrs C: Well we don’t have sex anymore do we Mr C: Oh well, well I don’t think it matters Mrs C: I’m not saying it matters, it doesn’t matter to me Mr C: Well, love makes me happy, that you love me Mrs C: I do love you Mr C: See that’s makes a lot to me Mrs C: Well we decided that if we love each other it doesn’t really matter haven’t we Mr C: Aye? Mrs C: If we love each other it doesn’t really matter does it Mr C: No, no, no, no, no I’m a bit of an old softie aren’t I, I am yeah I know Mrs C: Can be Mr C: I can and I can be an awkward bastard as well can’t I Mrs C: You can