Advocates call for inclusive dementia care for 2SLGBTQ+ community

When Sharon Hunter’s long time partner Stacy was diagnosed with dementia in 2020, “everything just kind of shattered,” she says.

Having fought and won the battle to change the laws against same-sex adoption years earlier, she says it’s been gut-wrenching to see her once formidable partner “sink in the quicksand” of dementia.

“I’ve exhausted myself throwing ropes … and doing everything I can to get her out, and I can’t. And so I’m sitting here and I watch her sink. And it’s devastating,” she says.

Along with contending with a life-altering diagnosis, Sharon says navigating the healthcare system for dementia care as a same-sex couple has been fraught with homophobia and heteronormativity.

“It has kind of been a nightmare on top of the nightmare. We came out years and years ago, but having to navigate the healthcare system for dementia meant that I had to come out over and over again to caregivers,” she says.

“They would always be asking us questions like, ‘who are you? Are you her daughter? Are you her sister? Are you her friend? Are you her mother? Are you her neighbour?’ And nobody, nobody asked us, ‘are you partners?'”

With every instance of explaining their relationship came a fresh round of trepidation and anxiety.

“It’s already hard dealing with dementia, because it shreds your heart and you’re terrified about the future and what’s going to happen, but then you’re having to come out [repeatedly] and then you’re open and vulnerable because you don’t know how people are going to respond. Are they going to now treat us differently? Are they going to dismiss us? Are they not going to listen to what we say?”

Sharon feels a systemic tendency to assume heterosexual as default had serious consequences for Stacy’s prognosis.

“We had an appointment with one of the specialists and they didn’t invite me in to the appointment. And I think that led to a misdiagnosis [or] only led to a partial diagnosis,” explains Sharon.

“Stacy was embarrassed about having dementia. She didn’t want people to know about it. So of course she was very good at covering it up. So I think she probably didn’t tell them everything, and of course then you’re not getting the full picture of what’s going on at home.”

Stacy was initially diagnosed with primary progressive aphasia.

“But I had to advocate for months after that to say, ‘I think this is something more because she’s paranoid and has delusions and heightened activity.’ And so I kept saying, ‘I think she has Lewy body dementia.'”

Stacy was eventually diagnosed with that condition. Given that early detection is key for all types of dementia, Sharon can’t help but wonder if they could have done more for her partner’s health had she been in the room during those early appointments.

Getting the right care was further stymied because Sharon was not informed of the second diagnosis. One of Stacy’s family members with whom they had little contact got the call instead.

“I was listed as partner on all of the forms. I was listed as the person who had to pay the bill. They had a copy of the power of attorney. And they ended up telling somebody else her diagnosis … it’s bizarre. It’s humiliating,” says Sharon.

She made an official complaint which has since been resolved, but she says it should never have come to that.

“I’m never going to be able to prove that that was homophobia, but why would you do that? … I don’t know if that would’ve happened to a couple who identified as straight,” she says.

Campaign for change

Experiences like Sharon and Stacy’s are at the heart of Egale Canada’s ‘Help Us Remain’ campaign, which highlights the inequities and injustices faced by members of the 2SLGBTQ+ community as they navigate coping with dementia. It is informed by a report the organization published last year on the prevalence of dementia and cognitive impairments in the community.

“Members of the 2SLGBTQ+ community are at two to three times higher risk of dementia because of cultural trauma — which is basically day-to-day discrimination and stereotyping that we experience as part of our lives,” says Egale’s executive director Helen Kennedy.

“Seven per cent of our community members are over 65. And so every decade of their existence, they have faced discrimination, whether it be state-sponsored or social discrimination at work and the education system. So this trauma obviously impacts our community members and it leads to a high risk of dementia and cognitive impairment.”

The campaign includes short audio stories contributed by ten participants, each providing a glimpse into their or their partner’s journey with dementia.

In Sharon’s story about Stacy, she echoes the findings of the report, relating it to their harrowing fight for adoption rights.

“I think the combination of the societal things, the trauma that she experienced, the trauma that our kids experienced; because we had to bear witness to that, I think all of those things contributed to her developing dementia for sure. But, I think trauma does that, right? Trauma kind of splinters people off from each other. It’s like a bomb going off in your midst, and we just had a lot of traumas,” she shares in the audio clip.

Through these stories, the campaign aims to expose the barriers Sharon and Stacy, and millions like them, continue to face in the healthcare system.

“It’s a very cis, heteronormative system. As they age, members of our communities face the fear of further discrimination when they have to seek out medical care. How do they approach a physician, a long-term care facility, a caregiver with respect to their identities? Who they authentically are can sometimes be the cause of a major trauma because of the discrimination and the homophobia and transphobia that members of our community experience … it’s incredibly sad, but it’s something that is happening and people need to be aware of it,” says Helen.

In addition, the campaign provides resources for caregivers as well as those working in healthcare.

“We do have allies within the healthcare system, but sometimes people are not sure how to engage. They’re afraid they’ll say the wrong word, they’ll use the wrong pronoun, but there are lots of resources available to folks to make them more comfortable, engaged and really educate them around these issues and more,” says Helen.

‘Help us remain’ is also focused on advocating for better representation.

“Traditionally, we have not been included in research — that needs to change. We know historically that our community members are never, or are rarely included in these conversations … I think that we need to be included in every conversation because our needs are quite different and they need to be addressed,” says Helen.

She adds that one of the key components of the campaign is to encourage and foster empathy.

“People need to really understand what it means to be a member of a marginalized group. People take their own lives very much for granted in terms of … [navigating] their way through the world. That’s [not the case] for members of the 2SLGBTQ+ community,” she says.

“How [we] navigate the world is [our] primary focus because of safety. You have to figure out what do you do when you get into a cab or an Uber? Where do you send your kids to school? What kind of education are they getting? What are your neighbours going to think of you and your partner? Everything that everyone else kind of takes for granted is heightened within our communities.”

Sharon hopes Egale’s campaign will go a long way in allowing community members to age in their authentic identities.

“When [2SLGBTQ+] people age, they have to go back into hiding … because there is no safe place for them. So I think the fact that Egale is doing this campaign and bringing awareness to this means that it’s going to open it up. It’s going make more people aware. And I guess what I want people to know is awareness can lead us to a better understanding and to treat one another better,” she says.

“Heterosexism, sexism, ageism, sizeism, racism – all the ‘isms’ have hate behind them. And I think what we don’t acknowledge in our society is that hate is a health concern. It’s probably the biggest health concern in the world. So I want people to know that, you know what, it’s time for love. It’s time that we learn about one another, understand our differences, understand our similarities. And I’m hoping that this campaign leads us to be able to act with love towards one another.”