Sign up for our eNews and discover more about what we're up to, the difference we're making, and, most importantly, how you can help.
When Phil was diagnosed with dementia, he knew things would change but one symptom he didn’t expect was his lack of interest in intimacy.
The unexpected symptom
“My sex drive decreased dramatically,” Phil said.
“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. So obviously that really hurt her. She would go to bed and cry herself to sleep.”
We spoke to Rob, who is a social worker and a Dementia Support Specialist, about dementia and intimacy. Rob has worked at Dementia Australia for more than 20 years and has supported many couples through changes in their relationship following a dementia diagnosis.
“Dementia not only affects the way a person’s brain works but also affects the way a person feels about themselves,” Rob said.
“Changes in the person’s brain can directly affect sex drive and 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 is a progressive condition, changes to sex drive can and do vary over time and someone who has a heightened libido as part of their experience of dementia may experience a decrease in sexual desire as further changes occur in the person’s brain.”
Phil’s psychiatrist explained to them that this can be a part of dementia and that 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,” Phil said.
“We worked through it and it probably took 12 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.
“More hugging when Jan gets home and before she leaves for work,” Phil said.
“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.”
Rob said there are many ways for people living with dementia and their partners to maintain and engage in intimacy.
“Why not try creating a date night without the pressure of sexual expectation,” Rob said.
“Some date night ideas 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.
“Part of the challenge of dementia is accepting change as the condition progresses, letting go of the past, trying not worry about the future and being in the present moment with each other.
“What is important to keep in mind is that the need for closeness and connection does not disappear with dementia, but it may require a new and different expression.”
They don’t ask that question
Phil was surprised when he found out that the change to his libido was due to dementia.
“It was never brought to our attention. I think doctors worry it might upset the patient,” Phil said.
“I think you have to read the room, but for a patient who’s had a couple of visits and you’re starting to get to know each other and feel more comfortable I think it’s one of those questions that has to be asked.
“Because if it swings the other way where the partner becomes very sexual that can be very difficult to manage and if the doctor doesn’t know that this is happening in the background and the partner is too upset or embarrassed to even bring it up, I think the doctor has lost a massive opportunity there to make sure it didn’t get out of control in the first place. And all it would have taken was that question.”
Rob said that Phil’s experience is unfortunately a common one.
“The impact of dementia on intimacy and sexuality is often not talked about in interactions with health professionals,” Rob said.
“If you are seeking support to understand changes and explore ideas to maintain this aspect of life, a good way to begin the conversation is to be proactive and ask questions. The National Dementia Helpline is also a useful starting point to get support with ideas. The helpline is open 24 hours a day, seven days a week, 365 days a year on 1800 100 500.”
Dementia isn’t just about memory loss
“There is still a common belief that dementia is about memory loss rather than understanding that having dementia affects every aspect of life,” Dementia Support Specialist Rob said.
“Some partners are aware of this, and some are not. Having insight into the fact that dementia can affect expressing intimacy is beneficial and helpful for couples as it lays the foundation for ongoing acceptance and the opportunity for ongoing intimate expression whatever form it may take.”
Phil said it was a relief to find out that his decreased sex drive was due to dementia.
“I think I felt relieved that I had something substantial to show Jan what it was rather than me having an affair,” Phil said.
What can you do if you are going through this?
Rob said that understanding what is happening and acceptance can help both people in this situation.
“Realise that changes in libido after a diagnosis of dementia can be a loss experience for both people in the couple and is most likely the direct result of having dementia rather than loss of interest in a partner,” Rob said.
“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 and can create opportunities to explore different ways to be intimate with your partner with dementia.
“For people living with dementia, it is important to know that changes in libido can be a part of the experience of having dementia. If possible, discuss your changing needs with your partner.”
If you need support or information on this topic, we are here to help. Call us anytime on 1800 100 500.
Want to know more about dementia and relationships? Check out these articles:
How do you navigate intimacy with dementia? How does dementia impact a person’s ability and desire for intimacy? Can people with dementia give consent? In this article we explore these topics and provide practical advice for couples.
Can aged care residents continue or start new relationships in care? Aged care residents have the right to access safe and high-quality care and services. But what happens if a resident wants to engage in intimacy and should aged care staff interfere?
Should I stay or should I go? When Vicki’s new husband Michael was diagnosed with dementia, she quickly realised their life together was not going to be the one she had dreamed of.
Partner, carer or both? We talked to people living with dementia, their partners and a Dementia Australia counsellor to find out if you can still maintain your partnership after a diagnosis of dementia.
For more resources about relationships, intimacy and dementia visit our library guide here: https://dementia-org.libguides.com/relationships-intimacy-and-dementia
Want to read more stories like this one? Subscribe to Dementia Australia’s eNews: https://www.dementia.org.au/newsletters