Andria Bianchi's research focuses on questions of sexual consent among those with dementia
By 2030, 75 million people will be diagnosed with dementia worldwide. Many of them will be sexually active. But how can they consent to sex?
That is the key question Andria Bianchi is examining for her PhD dissertation in Philosophy. Through her research, which included placements at two Toronto hospitals as part of the department’s new Applied Philosophy PhD program, she learned that many clinicians and caregivers were unsure how to handle the issue of consent for those with dementia and were uncomfortable discussing the topic. A few institutions have policies in place about sex and sexual consent, but most do not. Sometimes, the police are called.
This was the case with 78-year-old Henry Rayhons, a retired Iowa legislator who was charged with sexual abuse after having sex with his wife, who has dementia, in a nursing home. Staff believed she was no longer capable of consenting due to her Alzheimer’s. Bianchi used the case to illustrate the challenge in her Three Minute Thesis presentation, for which she was awarded the runner-up prize at the university-level finals on March 23.
The placement experience was eye opening for Bianchi. After months of reviewing literature on how medical decisions are made with or for people with dementia, her initial area of study, Bianchi was surprised to find actual practices in hospitals and nursing homes often differed greatly from recommendations. “A lot of people writing on the topic, including myself, aren’t clinicians and don’t understand the complexities of what they have to deal with every day, including family dynamics. I tend to support what the literature says and going out into the field forced me to contest some of those beliefs.”
While the general topic of decision-making among patients with dementia was well-covered in the literature, Bianchi saw a gap in discussion on the topic of sexual decision making. In her placements, too, the nurses and doctors were eager to speak about the broad problems, but Bianchi found they were reticent to speak about sexual consent.
"I think it’s a taboo topic," says Bianchi. "It’s something that is not commonly spoken about day to day. Health care workers were more comfortable speaking about medical decisions and sometimes that was the only experience they had and had considered."
In an effort to enable people with dementia to have their own sex lives, Bianchi envisions three potential approaches to the problem. First, family and clinicians can make decisions based on the patient’s prior wishes and values. Although this might be beneficial in some circumstances, it can be problematic since dementia often changes a person, including their interests, says Bianchi. Sometimes, they forget their spouse. Second, family members and clinicians can try to enable and support a patient, who may struggle to show consent in typical ways, to make their own autonomous decisions. “There are cases where this might not be the best approach, if family members and caregivers have their own values that could be forced onto the person with dementia, for instance.” Lastly, the idea of consent can be dismissed entirely in this population and family and clinicians can instead focus on individual happiness and pleasure.
Bianchi hopes her research will inform and influence changes at the institutional or even governmental level. At the very least, she hopes people will talk more about it.
“There’s this descriptive claim that people with dementia are asexual but also this normative claim that, well, they should be asexual,” said Bianchi. “I’m trying to refute that idea and develop ways of enabling them to engage in healthy, informed and autonomous sexual practices.”
A version of this story was published on the university's homepage.