Dementia Australia says more understanding and acceptance is needed about the effects of dementia on physical intimacy.
When Phil was diagnosed with dementia, he knew things would change, but one symptom he didn’t expect was a dramatic decrease in his sex drive. ‘It got to the stage where my wife Jan thought I was having an affair or that I was falling out of love with her,’ he said. ‘Obviously that really hurt her. She would go to bed and cry herself to sleep.’
Dementia Australia support specialists say imtimate relationship changes following a diagnosis are common, with dementia not only affecting the way a person’s brain works, but also the way people feel about themselves.
Changes in the person’s brain directly affect sex drive, which can include decreasing or increasing a person’s sex drive. Damage to communication centres in the brain can result in changes to a person’s ability to understand and interpret cues for intimacy from a partner and be able to respond to them appropriately.
As dementia progresses, changes to sex drive can and do vary over time, which means someone who has a heightened libido as part of their experience of dementia might experience a decrease in sexual desire as further changes occur within the brain.
Phil’s psychiatrist told the couple that it can be a part of dementia for people can experience an increase or decrease in libido.
‘So the psychiatrist explained that to Jan, but of course that doesn’t just change how you feel,’ said Phil.
‘We worked through it and it probably took twelve months for both of us to understand where we were, and I guess we made up the part that’s been missing in different ways. Because we are still in love and care for each other deeply, so it’s worked out really well but gee it was tough to begin with.’
Phil said that he and Jan have found other ways to share love and intimacy, including more hugging when Jan gets home, and before she leaves for work.
‘Because Jan is working full-time, I make sure she feels good when she walks through the door. When she gets home, I make sure the kitchen is done and the vacuuming. I never forget to tell Jan how beautiful she is before she goes to work and that is genuine.
Dementia Australia says there are many ways for people living with dementia and their partners to maintain intimacy, including date night ideas without the pressure of sexual expectation. Possibilities include walking together in nature, holding hands, watching a movie, getting up to see the sunrise, listening to music, and verbally expressing love and affection.
Experts say part of the challenge of dementia is accepting change as the condition progresses, letting go of the past, trying not to worry about the future and being in the present moment together.
The important thing to keep in mind is that the need for closeness and connection doesn’t disappear with dementia, but might require a new and different expression.’
A question that has to be asked
Phil was surprised when he discovered the change to his libido was due to dementia. ‘It was never brought to our attention,’ he said. ‘I think doctors worry it might upset the patient… but it’s one of those questions that has to be asked.’
Dementia Australia says the impact of dementia on intimacy and sexuality is often not talked about in interactions with health professionals, but being proactive and asking questions is the way to go. There is still a common belief that dementia is all about memory loss, when in reality it affects every aspect of life.
Experts say that for partners, accepting this change, without blame if possible (and letting go of expectation and guilt), can be a respectful and nurturing approach to a new way of being together. It can create opportunities to explore different ways to be intimate with your partner with dementia.
The National Dementia Helpline is a great starting point for individuals and couples to find out more. The line is open 24/7, every day of the year, on 1800 100 500.