If you, like me, know someone whose relationship is affected by dementia, you’ll know how painful it can be.
And whereas personal care needs get attention from health workers, rarely does anyone spend time listening to you and your partner about how dementia is undermining your relationship – and how some issues, such as sex and dementia, feel embarrassing, even taboo.
Sadly, when one partner suffers dementia, their mindsets may engender Increased, or decreased, sexual demands.
Increased demand may lead to unreasonable or exhausting demands, at odd or inappropriate times, and in odd or inappropriate places.
Decreased demand may leave you feeling you’re losing your closeness as a couple: your partner with dementia may turn on you, yell at you, tell you you’re cruel and, out of all character, demand a divorce.
You know that your loved one’s brain has been affected by dementia, but it’s unpleasant, hard to stomach and it wears you down.
Sometimes dementia causes people to lose their inhibitions and make unsuitable advances, touch themselves in public, or expose themselves.
To them, the way they’re behaving to them is normal.
They may think they’re a young, single man, which is why they’re flirting with a waitress in a restaurant. Or they may be lifting their skirt up or touching themselves because they need to go to the toilet and cannot communicate it to you appropriately.
It makes you want to curl up in embarrassment.
Of course, different stages of dementia impact on how you relate sexually. ‘For someone in the earlier stages of the condition, there may be few if any problems between you and your partner, despite the diagnosis,’ says one of our counsellors.
‘However, by the later stages, the person with dementia may no longer recognise you, so there’s a risk that they will become upset or agitated at the prospect of someone making sexual advances on them.’
Issues of consent come into play – as if you didn’t have enough problems already. ‘There’s a great deal of complexity around this area, because there are issues surrounding being able to give your consent versus the decline in mental capacity that happens when you have dementia,’ says our counsellor.
‘Essentially, if someone is lacking in mental capacity, you need to ask yourself if that means they will understand whether or not they wish to have sex with someone, and be mindful of that.’
In such cases, says the counsellor, it’s best to be led by the person with dementia, and put the decision into their hands. Which can mean rejection.
‘It can be especially hard if someone with dementia starts to push their partner away because they’re struggling to recognise them,’ says the counsellor. ‘What’s important is to remember is that the person with dementia hasn’t necessarily fallen out of love with their partner, they just don’t know any different. They may be living in an era where their partner has no role.’
It’s important you don’t take it personally, but that’s easier said than done.
At such times, more than ever, the carer needs support as much as the person who is being cared for. ‘The carer is basically the secondary victim in a dementia diagnosis, especially when it comes to relationships,’ says our counsellor.
Moreover, rejection in a relationship doesn’t always come from the person with dementia. ‘If you’re caring for someone, you may well be carrying out intimate caring, such as helping them to use the toilet, which can have an impact on your day-to-day relationship,’ says the counsellor.
Despite all this, it is still possible to maintain some intimacy. ‘Think sensual rather than sexual,’ says our counsellor. ‘Strokes, cuddles and holding hands are all tactile ways that maintain touch and a connection without being too forceful if the person with dementia doesn’t like it.’
What’s more, ‘it’s vital that you have someone you can talk to and who can provide emotional support – whether that’s a friend, family member or counsellor. Talking about it will help.’
If you might need our help, give us a call on 01234 356350.