“We all do it. Why does it suddenly stop when we end up in residential care?”
The “it” is sex; the speaker Gwenda Darling. “Just because I have a dementia diagnosis doesn’t mean that I’m not a sexual being,” she tells delegates attending the International Dementia Conference in Sydney in September.
Darling – a long-time advocate for people living with dementia – was one of four participants in a panel discussion about sex, consent, and cognitive impairment.
When it comes to consent – living with dementia or not – “No means no, but yes means yes!” says Darling.
Darling tells delegates that, since her diagnosis in 2012, her sex drive has fluctuated. “When I was first diagnosed in the early days I became hypersexual, then I became pansexual – I would have slept with anything. Now I’ve become asexual.”
Whatever her sexual appetite, Darling says: “It’s not up to aged care workers to decide who I sleep with and when I sleep with them.”
It’s a thorny issue.
“I do understand the struggle aged care providers have,” says Ashley Roberts – a consultant at The Dementia Centre. “They are trying to protect the resident from harm, I get the idea of erring on the side of caution.”
That said, Roberts tells delegates when aged care residents show one another affection people often rush to the wrong conclusion.
“We jump straight to intercourse when we’re talking about sexuality,” he says. “It’s important to know what we are looking at – what is the interaction, what is actually going on? We need to get a lot better at describing what we are seeing. We need context and we need to know intent.”
Dr Nathalie Huitema – a sexologist and psychologist who specialises in aged care – says providers should offer workforce training.
“Training and increased knowledge has a positive effect on the attitudes that people have towards sexuality. It’s very important to normalise sex.”
Providers need to support staff with clear guidelines, adds Huitema. “It’s important for care facilities to be proactive rather than reactive; I don’t think that is supportive of staff or supportive of residents.”
Steering back to consent, Olga Pandos – a lecturer in law at the University of Adelaide – tells delegates every individual is presumed to have full decision-making capacity.
“The diagnosis of a cognitive impairment does not mean that someone lacks capacity,” she says.
“And where there are incidences where we might question whether or not that person has impaired decision-making capacity, that does not mean they lack capacity to make any decision. It is decision specific. They might be able to make decisions about certain topics but perhaps not others.”
Darling agrees. “People living with dementia often say ‘yes’ or ‘no’ – but just because that’s what they say this hour, doesn’t mean it’s going to be the same in the next hour. If I give consent now it doesn’t mean in an hour’s time or two hours’ time I consent.”
Where there is a need to conduct an assessment of capacity, it should be undertaken by someone who has the expertise to do so, says Pandos. “To deprive someone of their decision-making capacity is a really significant outcome.”
And if an individual does make an unwise decision?
“We have every right to make mistakes and we have every right to make decisions that people do not necessarily agree with,” she says.
People can act on impulse and act in the moment, adds Huitema. “I think we hold older adults to a higher standard than we do ourselves.”
Basic sexual rights ought to be protected and upheld
Discussing the Serious Incident Reporting Scheme – which was established in 2021 to, in part, reduce sexual assaults in residential care – Pandos questions whose interests SIRS is trying to protect.
“Is it the resident, the worker, [or] the reputation of the aged care facility?”
There is, says Pandos, an inclination by providers to over-report. “Are we talking of mere acts of intimacy? Sexual act does not mean sexual intercourse. We are seeing a lot of defensive practice in our current scheme.”
Defensive practices that can infringe upon a resident’s human rights, she says, “basic sexual rights that ought to be protected and upheld”.
And talked about openly, says Huitema. She asks delegates to work with older adults on an individual level. “It’s important to view things from a resident’s viewpoint.” Understanding their sexual desires “and how we can support them in their wants and needs”.
When it’s suggested that people of a certain generation could be uncomfortable talking about sex, Huitema dismisses the notion.
“My experience is that older adults speak about it very freely. They tell me things that I think are too much information – I don’t need to know every detail.”
She adds: “They are very comfortable talking about it because nobody ever asks them about it.”
Roberts says providers need to prepare for the baby boomers who grew up in the era of free love.
“They’re going to be placing the expression of sexuality a little bit higher on their agenda than the generation before,” he says.
And why not? We all know that sex improves mental health and general wellbeing.
Or as Darling puts it: “Just for that nano-second when the fireworks go off, you’re pain free, your head’s clear – it’s a bonus. And we have that right.”
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