Sex and Dementia

I've come very close to writing about this again and again but, again and again, I've backed off.  Our sex lives aren't something we talk about are they?  Or maybe that's just me (but my friends don't seem to either), or maybe it's our generation but whatever the reason every time I've come close to putting this into words I've changed my mind.  One reason is that friends read what I've written and maybe they don't want to hear about my sex life and, more importantly, Jake reads this blog occasionally to find out what's really going on in my head and who wants to even think about  their parents having sex?  Then I realised that friends don't have to read it if they don't want to and Jake will run a mile as soon as he sees the title so I came to the conclusion that this area of our lives is too important not to be put out there for some discussion or other.

So, sex and dementia, can the two exist side by side?  The main difficulty with sex in the lives of those living with dementia is that there is so little information on the subject, couple that with the fact we have no idea what others are going through and we feel completely isolated.   There are fact sheets of course but I haven't read one yet that had anything useful in it and all I know is that this area of our life is different now to how it was.  I promise you I won't go into too much detail but, after 42 years together, Ash could still make me go weak at the knees with a kiss.  No matter what I saw in the mirror he made it obvious that he found me irresistible.  He couldn't walk past me without putting his arm round me, he frequently walked up to give me a kiss, he told me he loved me more than once every day and sex was something that happened at least once a week.  I don't know if, after all that time together, once a week would be considered a lot but I do know it made us both feel good.  Several years ago Ash made a super king size bed for us and, when we woke after our first night in it, he said 'you'd better call a taxi and make your way over here for a cuddle'.  That became a frequent comment because mornings were always for cuddles, other times were for hugs and there were lots of those.  Then came that fateful day when we were told he had dementia and the cuddles, hugs and sex stopped almost instantly.  One of the most stupid comments I read in a fact sheet on sex and dementia was that the best way to deal with the lack of it was to find other ways to 'be intimate' (that phrase alone should tell you all you need to know about the fact sheet itself).  I read that and instantly realised it had been written by someone with no actual experience of this situation because, in my opinion, there is no substitute for the intimacy created by an active sex life with someone you love beyond anything and it really isn't possible to create intimacy a) with someone who can't even bring themselves to hold your hand or b) with someone who is actually a stranger to you.  I realise that this is our situation and others will be experiencing something completely different but the reality of it all seems to be that, whatever it was like before, it will now often be the reverse and maybe we need to be able to talk about that rather than reading fact sheets which don't resemble real life in any way, shape or form.  In the past I've said that you should grab every opportunity that comes your way, have adventures while you can, don't wait to do something until you can afford it or have the time etc etc.  Now I say that if you are reading this as a son, daughter or sibling of someone with dementia but are also in a relationship of your very own then don't ever think I'm too tired tonight let's wait until tomorrow, I'm too busy this week let's wait until next.  If your other half wants to make love say 'yes, I'd like that too' and then maybe, in the future, when you're reliant on the past you can look back on all those times you said yes and smile at the memories.

You might not want to comment publicly on this post but please feel free to email me at  I'd love to know I'm not the only person who feels like this.


Anonymous said…
What's a sex life!!!! Seriously thought for me speaking personally it would feel strange as I have never been into sex with strangers and that's sadly the case now as there would be no emotions attached to the act not because there aren't any emotions for each other but because that particular connection that we yearn for including love and empathy is lost to us ♥🌵
Jane said…
Exactly my thoughts. It's a bit like being married to a twin. You start off with one of them and then they start swapping places, without you noticing at first but then it becomes more obvious until you realise you're sharing your life with the one you don't know very well. He looks and sounds the same but he is definitely a different person.