1. 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

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

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

4. 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

5. 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

6. 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

7. 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!

8. 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)

9. 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)

10. 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)

11. 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)

12. 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)

13. 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

14. 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)

15. 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)

16. 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)

17. 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)

18. 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]

19. 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