Consent and sexual health: International Dementia Conference 2024

Those in the International Dementia Conference (IDC) arena faced some of the biggest taboos in aged care head on. One of the most complex being the sexual health and rights of people living with dementia.

The already sensitive issue of sexual consent becomes even more nuanced with the introduction of cognitive decline and the discussion around decision-making capacity.

For context, there were 2320 reported Priority 1 incidents for unlawful or inappropriate sexual conduct in the 2023-24 period, equating to around 50 sexual assaults occurring every week in Australian aged care facilities.

Although this raises significant concerns for the safety, dignity and protection of those living in residential care, US based sexologist Dr Nathalie Huitema believes that at least some of reported incidents may have been consensual.

“I advocate for a more dementia-friendly approach, where older adults with dementia are considered autonomous individuals with personal needs and wants,” Dr Huitema said.

“Many people wrongly think that cognitive decline means you can’t give sexual consent.

“But studies show that the brain area responsible for attachment, love, and lust is actually quite basic, which challenges the idea that high-level thinking is needed for love and intimacy.

“By understanding that individuals retain their emotional depth, we can better appreciate their full humanity, ensure they live with dignity and respect, and allow them to express their love and attachment to others.”

The complexities around giving consent with cognitive decline opens up myriad issues around human rights, the role of a carer, and, more widely, the deeply ingrained societal expectation that people become void of sexual desire as they age, and that perhaps there is some "hidden expiration date" on giving consent.

Dr Huitema says that many people unconsciously hold older Australians to a higher standard than they would apply to themselves, especially on matters of sex, and there is a long way to go when addressing this cultural bias. Understanding and a non-judgemental approach are key.

“Staff training will enhance a positive attitude towards sexuality, and guidelines will support staff in implementing a positive attitude to sexuality in daily work with residents, and family,” Dr Huitema said.

“Sexual health is fundamental to the overall health and well-being of older adults, as it can elevate mood, improve cardiac health, and reduce pain, among other benefits.

“Depriving older adults of that seems almost counterproductive to what healthcare stands for. We all need closeness, friendships, love, and intimacy, throughout our whole lifetime. Even in our golden years, even when we have cognitive issues.

“I hope Australian healthcare is ready to focus on potential instead of deficits, promoting sexual well-being and overall quality of life."

Much of the discussion around sexual health at the IDC boiled down to a few key principles, highlighting the importance of language, definitions, and training in managing sexual consent in dementia care, and emphasising the need for a much broader view of sexuality and the consideration of affectionate relationships within a care setting.

Panels also discussed the importance of respecting the autonomy and rights of individuals with dementia in all aspects, including their right to engage in consensual sexual relationships.

"What I think is missing from current work on sexual consent in long-term care is a focus on potential versus deficit, assent versus consent, and sexual potential versus capacity," Dr Huitema said.

"I think to thrive, residents need relationships, they need touch, we need to optimise their environments and meet the needs. And I think it's important to be proactive as aged care instead of reactive, towards sexuality."

Dementia Advocate Gwenda Darling received her dementia diagnosis in 2012 and has since become a fierce advocate for the rights of others with the disease, she is a member of the National Older Persons Reference Group, (OPAN) Council of Elders, Dementia Australia Advisory Committee and AdNET registry steering committee, and an investigator with University of Western Australia, Deakin University and QUT research grants.

"Look, we all can do it [have sex]. Why does it suddenly stop when we end up in residential care? Just because I have a dementia diagnosis doesn't mean that I'm not a sexual being," she said.

Ms Darling said that by "telling the truth" about older people and those living with dementia the sector will be able to provide better and more inclusive care, as she called out policy makers and media outlets for infantilising and sensationalising her's and many others' story.

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