Sex and dementia are often perceived as unlikely bedfellows. In many cases, care partners assume a person living with dementia loses interest in sex or loses their ability to be a sexual being. In other instances, care partners (and other loved ones) feel uncomfortable just thinking about the subject. But dementia specialist Danuta Lipinska is working to dismantle these stereotypes by facing the taboo topic of sex and dementia head on.

Danuta Lipinska, author of "Dementia, Sex and Wellbeing"

Lipinska, who resides in Norwich, England, is a seasoned trainer and counsellor for persons living with dementia and their care partners. Years ago, while working as an elder services director for a community mental health organization in New Hampshire, she began speaking with people with mental health issues and cognitive changes — including people living with dementia — about their sexuality and the grief surrounding the loss of their sexual selves.

These conversations eventually led her to write two books, the latest of which was published in 2017 and speaks candidly about sex and dementia. Aptly titled Dementia, Sex and Wellbeing, the book dives into the topic of dementia and sex through a person-centred lens by discussing the biological need for sex, the sexualized circumstances care partners may find themselves in, how to respond to those sexual expressions, and how to have progressive conversations while encouraging self-reflection.

Here, Lipinska shares some of the insights from her groundbreaking book, along with tips on how care partners can better respect and accommodate the sexual rights of people living with dementia.

Q: Why did you write Dementia, Sex and Wellbeing?

A: The book is about taking a risk and saying some things I've heard [from people living with dementia] in therapy, in training programs and in family support groups. My clients, in a way, asked me to write this book because they wanted people to know how important sexuality is for them and that they wanted to be considered as whole human beings — that involves spirituality, sexuality and all of who they are.

When someone's living with the challenges that accompany dementia, considering the whole of that individual somehow becomes diminished. Caregivers spend a lot of time and effort trying to enhance the well-being and the lived experiences of the person, yet they manage to chop out a whole piece of the human being.

I think I partly wrote the book for myself, too — so that if I get to the stage where I have a dementia and I'm living in a care home, somebody will figure out I really want to have sex with my husband, and they’ll let us have a double bed and a closed room. That's slightly tongue-in-cheek, but not entirely.

"The older we get, the less sexually attractive and sexually available we are considered ... It’s another way people living with dementia are ignored and disenfranchised."

– Danuta Lipinska

Q: In the book, you write about the stigma surrounding sex and dementia. Why do you think people are afraid to talk about this subject?

A: Inherently there's great stigma around sexuality and intimacy, in general. But there are more stereotypes and assumptions that we have about older adults and sexuality. The older we get, the less sexually attractive and sexually available we are considered. Add into that the complexity of how some adult children find it very difficult to imagine that their parent or grandparent living with dementia has sexual thoughts, feelings, fantasies and behaviours. It’s another way people living with dementia are ignored and disenfranchised.

Q: How are you working to break the stigma?

A: It's a lot easier when you're a professional to take that step back to be able to support someone's identity, individuality and choice. The work I do is to try and support people to get over barriers and to help people to get past that thinking. My role is being an advocate for the adult person living with dementia … I know it's your dad, your husband or your grandpa. But my responsibility is to ensure that their individuality and their human rights are protected. If someone wants to continue intimacy and sexuality in their life, either alone or with others, then we have to be willing to consider what that might look like. I hope that the book will help people to have these tricky conversations.

"Sex is an area of a person's life that may be important to them, and one which has given them great joy and connection with other people. We can’t just leave it out of the conversation."

– Danuta Lipinska

Front cover of "Dementia, Sex and Wellbeing". Photo courtesy of Danuta Lipinska.

Q: And what might that look like? How might a person with dementia express their sexuality?

A: Depending on what kind of dementia a person has, the frontal cortex can be damaged. They may not have the control over their sexual impulses that they might have had previously. And let's face it, if you are naked and being bathed or being massaged with lovely smelling cream, the trigger is there. The last time you were naked in somebody's hands may have been a prelude to sex. It's possible that person can simply misinterpret what those triggers mean and then we end up with a sexualized situation that wasn't intended that way at all.

This disinhibition is one thing, but memory also comes into play. Let's say a woman is having a conversation with her son, but because her son is the spitting image of how her husband looked when she met him many years ago, she may make inappropriate moves or have a sexualized conversation. The poor son is horrified but the woman is simply seeing her husband back in time, as he used to be.

That's how we hear of people being in the lounge and, let's say, exposing themselves. I’ve heard people say this is inappropriate sexual behaviour. But it's not the behaviour that's inappropriate, it's the people involved, the circumstances and the context.

Q: What should a care partner do if events like these happen?

A: Our impulse is to be shocked, disgusted and unnerved, especially if there are other people witnessing what's happening. But think about it: an adult is used to having their own sexuality and their own way of expressing themself, but all those private thoughts, feelings and behaviours are now available for everyone else to be witnessing. The most important thing is to ensure that the person who is self-pleasuring or speaking out sexually is not judged or made to feel embarrassed and humiliated.

For care staff, at the back of my book there are scripts about training staff and how to get into these conversations. I would really encourage care providers to be talking about sexuality and the people they support. Sometimes we say we can't talk about that until creating a sense of trust, yet we ask them questions about their bank accounts and their bowel habits … we can’t get much more personal than that.

Q: Why is it important to acknowledge that people with dementia are sexual beings?

A: People had been sexual before their diagnosis. This is a natural expression of human connection, even if that connection is only with self. After all, self-pleasuring may be the last opportunity an individual has to have control over their body and agency over what goes on. Somebody else shouldn’t take that over.

Photo courtesy of Pexels.

There are older women and men who really need help and support with things like Viagra, lubricants, vibrators and sex toys, because nobody's talking to them about it. There has to be somebody who's willing to say, “I know this isn't the most comfortable topic, but let's just talk about it without judgment or expectation and see where this takes us.”

If we're not imagining a person living with dementia could be a sexual person, we're discriminating against them.

Sex is an area of a person's life that may be important to them, and one which has given them great joy and connection with other people. We can’t just leave it out of the conversation.

Danuta Lipinska’s top three care-partner tips for handling natural sexual expressions:

1. Be supportive and understanding of the person’s right to express their sexual self.

“If possible,” Lipinska says, “help to move the person to a safe and private space where they can continue self-pleasuring or talking in a sexual manner.”

2. Redirect their sexual energy.

If it’s not possible for that person to express their sexual energy in the moment, Lipinska advises care partners to “[say something like] ‘You've got a lot of energy today — let's do something with that energy!’ Then go do something that's active, something that helps to dissipate the build-up of energy equivalent to the energy that builds up around sexuality, giving that person a sense of well-being and relaxation afterwards.”

3. Talk about it openly.

“It needs to be part of the conversation when people are moving into a care home as we explore the whole of who that person is, including their sexuality,” Lipinska says. “Find a third person who can support those conversations if it feels too tricky to be having them by yourselves — someone who will address the process of sex, in terms of their health and any kind of aids they could benefit from, to help them to continue having a healthy and active sex life.”