With Valentine’s Day on the horizon, we’ve asked a Relate counsellor to share her thoughts on how dementia can affect romance and intimacy.

For some people, Valentine’s Day is the very embodiment of love and romance and a chance to show others how much you care, for others it’s a commercial money-making scam that seeks to encourage competitive romantic gestures.

Either way, it places the spotlight very much on relationships, and this is also the case if dementia is involved. But how exactly does dementia affect relationships?

Let’s talk about sex

‘Sex in general is a taboo subject – in today’s society we’re surrounded by sex, but in my role, I’ve realised that people generally aren’t that willing to talk openly about the topic,’ says Denise Knowles, a psychosexual therapist from relationship charity, Relate. ‘This is particularly the case for sex between the elderly, despite it being very normal and healthy.’

But the truth is, intimacy and sexuality can be affected by dementia in a number of ways, including:

- Increased or decreased sexual demands
If it’s the former, it could lead to unreasonable or exhausting demands, at odd or inappropriate times or places. If it’s the latter, you may feel like you’re losing your closeness as a couple because your loved one with dementia doesn’t like to be with you.

- Loss of inhibitions and inappropriate behaviour
Sometimes dementia causes people to lose their inhibitions, make unsuitable advances, touch themselves in public or expose themselves. It’s worth remembering that as far as the person with dementia thinks, the way they’re acting is totally 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 aren’t sure how to communicate it to you properly.

When looking at sex in dementia, it’s vital that you take on board the different levels or stages of the condition, as that can of course impact on how people relate on a sexual level.

‘For someone in the earlier stages of the condition, there may be few if any problems between you and your partner, despite the diagnosis of the condition,’ says Denise. ‘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 around consent

‘There is a great deal of complexity around this area, because there are issues surrounding being able to give your consent vs the decline in mental capacity that happens when you have dementia,’ says Denise. ‘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 cases such as this, it’s best to be led by the person with dementia, and put the decision into their hands.

Dealing with rejection

It can be especially hard if someone with dementia starts to push their husband or wife away, because they’re struggling to recognise them.

‘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,’ says Denise. ‘They may be living in an era where their partner has no role. It’s important that they not take it personally, which is not an easy ask of course.’

It’s at times like this that you realise how important it is to support the carer as much as the person who is being cared for, particularly when it comes to a change in relationships.

‘The carer is basically the secondary victim in a dementia diagnosis, especially when it comes to relationships,’ adds Denise.

And remember, 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 Denise.

Maintaining intimacy

So sex may be off the agenda, but intimacy can still be maintained. When thinking about this, you need to take into account not just their dementia, but also their age and any physical problems that may exist. It’s normal for sex drive to decline as you age, irrespective of whether you’ve been diagnosed with dementia, and if the person with dementia or their carer also has health problems – joint issues, heart problems – that could already affect intimate relationships.

However, it’s still possible to maintain intimacy says Denise. ‘Think sensual rather than sexual. 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.’

Finding support

‘It’s vital that you have someone you can talk to and who can provide emotional support if you’re struggling with relationship issues since a dementia diagnosis,’ says Denise. ‘Whether that’s a friend, family member or counsellor, talking about it will help.’

Denise Knowles is psychosexual therapist and counsellor for Relate, the relationships charity. She is also a Dementia Champion. Watch the video below to find out more about Relate’s The Best Medicine campaign which is helping to support people whose relationships are affected by illness, mental illness or disability.