Back in the closet? The LGBTQ community's struggle with dementia

The problems of caring for someone with dementia can be compounded by an LGBTQ identity, and Jeanne Rokosh is worried she is going to have to face those problems first hand.

Rokosh lives in Sicamous, B.C., and identifies as an androgynous gay woman. Her grandmother had dementia, and so did her aunt.

"I said to myself, you know, you need to pay attention to this," she said.

"As a result of that, seven years ago I had an MRI that showed some early, early markings that could be connected to that particular dementia. And then I just had an MRI this year that showed it was progressing, albeit slowly it was progressing."

Rokosh is widowed and not currently in a relationship. Should her condition deteriorate to the point where she can't care for herself, long-term care seems to be a likely option for her.

"I would probably go into a facility somewhere and I wouldn't disclose," she said.

"I would fear that if I did disclose there would be people who work there who have religious backgrounds, for example. They might feel strongly that I am sinning or that I am acting in a way that's inappropriate. That could mean that I get different treatment. That could mean that I get different meals. That could mean that when I need somebody when I ring the bell, somebody doesn't come. So I fear that."

Community more isolated

The Alzheimer Society of P.E.I. is in the midst of research to learn more about the issues the LGBTQ community faces with dementia care.

The research is part of a partnership for an inclusive dementia care initiative. There is not a lot of educational material for anyone caring for a loved one with dementia, said society CEO Jaime Constable, and help addressing the particular problems faced by LGBTQ individuals is even harder to come by.

"They tend to be, as they become seniors, more isolated," said Constable.

"Thirty four per cent of them live alone. They don't have a large circle of support around them. Their primary caregivers are often friends or distant relatives or community members and acquaintances because they don't necessarily have adult children who would care for them."

They can also be estranged from their families, who may have cut ties with them when they came out of the closet. This can lead to particular issues around planning, in particular regarding who has the power to make decisions about their care.

Potential discrimination in long-term care is absolutely an issue, said Constable.

"These spaces are not usually well set up for queer-specific care," she said.

"The individual often has to come out again to the staff and the residents. And many of these folks, they actually just choose to go back into the closet to avoid discriminatory acts or isolation or harassment or mistreatment."

And so in addition to the losses associated with dementia for anyone going into long-term care — of health, of home, of independence — they also suffer a loss of identity.

"You live this mixed feeling of, 'This is who I am and I really need to be this person,' but it's always at a cost," said Rokosh.

The research being done by the Alzheimer Society is really important, said Rokosh, and will likely reveal more complexity in the care requirements of LGBTQ individuals.

The Alzheimer Society is connecting with local groups — Pride P.E.I., PEERS Alliance, P.E.I. Transgender Network — for its research, and also inviting people to share their personal experiences.