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Anthea Rowan

This is the 96th instalment in a series on dementia, including the research into its causes and treatment, advice for carers, and stories of hope.
A quiet heartbreak is unfolding behind the closed doors of dementia care, one that few carers dare to speak about openly: the ebb of physical intimacy.
A tentative question posted to an online dementia carer support group sparked a flurry of moving responses. That question: “I really don’t know how to approach this subject, but I’m wondering who is still sexually active with a partner who has a dementia diagnosis. I’m struggling with this.”
It is a distressing issue for the hundreds of people who weigh in. In emotional comments, both men and women describe their experiences, challenges and concerns, such as these below:

“For the past two years, we’ve slept in separate bedrooms. I just can’t go there: there is nothing sexy about a man who never showers or shaves and does nothing all day but sleep.”


“I have so many beautiful memories, but today is a very different reality, and I can’t ‘fake’ it. I tell him my hormones don’t work any more and I can’t do it – I tell him it is all my problem – a medical one. I hug him and tell him I am sorry. So far it has worked – but it breaks my heart.”


“My wife and I once enjoyed a very active sex life before she presented with [dementia] symptoms. The last time we had sex was a few years ago; she actually initiated it, but during the act, something shifted, her body stiffened visibly, and her expression changed. That was that. For me, consent in my mind was withdrawn and that was the very last time.”


Some respondents speak to struggling with partners who exhibit sexual desire that they cannot reciprocate because they feel more like parents than partners: “I feel like he’s my child now.” Some describe a partner’s anger when they do not respond in kind. Some explain that a period of uninhibited sexual interest is a phase of the illness and will wane or can be managed with medication.
Others speak of a different sort of intimacy: “We do have moments of tenderness, hand-holding and a kiss when he has episodes of clarity. These are becoming rarer as my nursing role takes precedence.”
Amanda Pang, co-founder of Hong Kong home-care company Evercare Health, says a dementia diagnosis “reshapes intimacy in ways people rarely talk about”. Her comment on how the dynamics within a romantic relationship change echoes many of those on the forum.
“When a partner becomes a full-time carer, the relationship often shifts from romantic to clinical. They find themselves bathing their spouse, dressing them, monitoring for nighttime wandering – intimate tasks that blur the boundaries that once defined their partnership,” Pang says.

Just as experts are quick to remind us that dementia presents differently in every person it affects, the experiences of sexuality and relationships are also unique to individuals.
Dr Nathalie Huitema, a US-based specialist in sexuality, ageing and dementia care, agrees that people – even healthcare professionals – are ashamed to talk about sexuality, and especially about sexuality later in life.
“Most clinicians aren’t well trained in sexuality across the lifespan, and very few have any education on sexual changes in dementia,” she says. As a result, these concerns are left unspoken – except privately on forums – and add to carers’ already substantial burden.
There are many types of dementia and even more types of people, Huitema says. The combination of both, and the effect on relationships and intimacy, is wide-ranging and unpredictable.
Huitema firmly rejects the phrase “inappropriate sexual behaviour” when applied to those with dementia.
That term, she says, “suggests some sort of moral failure. In dementia, these behaviours are usually the result of disinhibition, confusion or misidentifying a partner. It’s about the brain losing the ability to filter impulses or understand context. I prefer the term ‘misdirected sexual expression’.”

Sexual interaction between partners might feel instinctual, but there are a lot of cognitive steps involved in making a move and making out.
“First you have or know or feel that you want to have sex, then you have to initiate it, then you have to check in with your partner whether they feel the same way in that moment,” Huitema says. “Then you have to take certain steps, because sexual interaction involves a beginning, a middle and an end.”
People with dementia take less initiative in all kinds of activities – not just sex. They can become more self-involved, which means in relationships they focus on themselves and their own sexual desires and not on their partner. Brain changes mean they often become disinhibited.
That is one of the causes of misdirected sexual expression, Huitema explains.
What’s happening in the brain
Understanding how dementia attacks specific regions of the brain helps carers take the sudden shifts in intimacy less personally.
When the frontal lobes, which act like a social filter, are damaged, people can lose impulse control or misread social cues and become disinhibited, Huitema says.
If the temporal lobes – the brain’s “filing cabinet” that governs memory and emotion – are involved, a person may have trouble recognising their partner or feeling connected to them.
The parietal lobes – the sensory processor – can affect how touch is perceived. A gentle, loving touch or a reassuring hug might feel confusing, painful or even threatening.
As the brain’s cortex declines, a person’s awareness of the relationship with their significant other fades, but their more primal, deep-seated human needs for warmth, physical comfort and emotional security remain intact, and seeking intimacy becomes instinctive rather than relational.
These changes are not intentional, Huitema says, but neurological. “I’m really happy when spouses and partners understand that … so they take it less personally.”

Sexuality is not just about attraction but about context and how people feel. After a dementia diagnosis, there could be huge disparities between feelings, and the person with dementia might feel confused, stressed or upset, and their partner exhausted and underappreciated.
Huitema says one thing everybody needs is human touch, and that this is true “no matter how the dementia evolves, or even among people with severe cognitive impairment”.
“We call it skin hunger,” she adds. “Even when sexuality changes in dementia, the need for physical closeness doesn’t go away … People still need to be held, touched, hugged or have someone sit close to them.
“Touch is calming, grounding, and helps people feel safe and connected. So, when sexual behaviour becomes confusing for partners, they can still offer nonsexual touch, such as holding hands, sitting together, gentle massage, cuddling.”

Getting the right help can support caring partners who feel exhausted, says Evercare’s Pang.
“We’ve worked with spouses who couldn’t sleep for months because they were concerned about their partner wandering in an unfamiliar environment,” she says. “Our carers take on these tasks so the healthy spouse can step back from being a nurse and simply be a partner again.
“That creates space for whatever connection remains: holding hands, a quiet moment together, or just the relief of knowing they’re safe.”
5 expert tips on intimacy after a dementia diagnosis
1. Acknowledge your own needs
Recognise that your intimacy needs are valid, even if your partner can no longer participate – from the National Institute on Aging (US)
2. Seek a specialised community
Connect with carer support groups and join platforms for carers to reduce isolation. Use relationship counselling services; you will feel less alone if you do – Alzheimer’s Society (UK)
3. Use comfort alternatives
Offer body pillows, a wrapped hot-water bottle, or a large stuffed animal to satisfy a person’s physical need for a warm body in bed. Keep their hands busy with an activity, such as folding, sorting or squeezing stress balls – Alzheimer Society of Canada
4. Redirect and distract
Gentle shifts in environment, like taking a walk or holding hands, can de-escalate misdirected sexual energy – Dementia UK
5. Consult a doctor
Sudden spikes in hypersexuality can be managed medically; consult a specialist if behaviours become overwhelming – Mayo Clinic
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Physical intimacy often reduces in couples where one partner has dementia, but it is an issue that is rarely spoken about. Experts advise on navigating natural urges and offering different forms of intimacy. Photo: Shutterstock

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Du has maintained a daily yoga practice for 10 years. Photo: Courtesy of Shan Studios

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Zahinoor Ismail, of the O’Brien Institute for Public Health at the University of Calgary. Photo: University of Calgary

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Professor Fiona Kumfor is a neuropsychologist at the University of Sydney in Australia. Photo: Fiona Kumfor

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Timothy Kwok is a professor of geriatric medicine at Chinese University of Hong Kong. Photo: Timothy Kwok

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Amyloid plaques and tau tangles found in Alzheimer’s sufferers’ brains are caused by build-ups of proteins that block electrical messages. 
Photo: Shutterstock

Dr Andrew Lees, author of “The Silent Plague”, is a professor of neurology at the National Hospital in London and University College London. Photo: Dr Andrew Lees

Lee’s image of “sepia galactic storms”: the rust-coloured clumps are stained amyloid plaques, the little black squiggles are tau tangles. Photo: Andrew Lee

Two neurons: a healthy one and one with Alzheimer’s disease – with tangles and disintegration of the microtubules. Photo: Shutterstock

Daniele Vigolo and his team were able to monitor the change from liquid to solid in “fused in sarcoma” proteins, and study their internal structure. Photo: Daniele Vigolo

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Lifestyle tips for avoiding or delaying the onset of Alzheimer’s disease, the most common form of dementia, include staying active and socially engaged. Photo: Shutterstock

Keep your brain active throughout your lifetime – particularly by learning new skills as you age. Photo: Shutterstock 

Regular physical activity – even having a daily walk – can help delay the onset of dementia. Photo: Shutterstock

Dr Andrew Lees is professor of neurology at the National Hospital in London, and University College London. Photo: Dr Andrew Lees

Professor Timothy Kwok is professor of geriatric medicine at the Chinese University of Hong Kong. 

Professor Craig Ritchie is professor of the psychiatry of ageing at the University of Edinburgh. Photo: Professor Craig Ritchie

Dr David Merrill is an adult and geriatric psychiatrist and director of the Brain Health Centre at the Pacific Neuroscience Institute in California. Photo: courtesy of David Merrill

David Robinson is a consultant geriatrician at St James’s Hospital in Dublin. Photo: David Robinson

How to navigate sex and intimacy when dementia changes a relationship

.css-1c6uqr6{color:inherit;font-weight:inherit;font-size:inherit;font-family:inherit;line-height:inherit;overflow-wrap:break-word;}Dementia often alters relationships beyond the sufferer’s urges. Experts share tips on dealing with this part of the condition few discuss

Dementia often alters relationships beyond the sufferer’s urges. Experts share tips on dealing with this part of the condition few discuss