Skip to content
Join our Newsletter

Gay people often have nowhere to turn for partner's dementia

Losing his partner to dementia was bad. But for a Saanich man, being gay and elderly created an almost unbearable isolation. “There was no help,” said the man, now in his 80s. He lost his partner in 1999 after several years of progressive dementia.
New_C1-0612-gay.jpg
Experts and advocacy groups are just starting to grapple with the issues surrounding gay people who suffer from dementia.

Losing his partner to dementia was bad. But for a Saanich man, being gay and elderly created an almost unbearable isolation.

“There was no help,” said the man, now in his 80s. He lost his partner in 1999 after several years of progressive dementia.

“We came from a generation for whom we didn’t really exist or we didn’t exist legally or morally,” he said, even now asking his name be withheld. “Some of [that generation] even think we are not really human.”

So when his ailing partner was still alive, the Saanich man was referred to seniors’ groups or support circles for Alzheimer’s patients and their partners. But there was no way he was going to seek them out.

“To go and talk to a bunch of old women and a few old men about my problems with [his partner] and their problems with their spouses, I wouldn’t have wanted to talk to them,” he said.

“They wouldn’t have understood me and I don’t think they would have wanted me there.”

Geriatricians and advocacy agencies for Alzheimer’s and dementia patients and their families are starting to recognize support for gay patients and their partners is increasingly necessary.

A support group was started in Vancouver recently, but so far there is nothing on the Island.

Numbers are difficult to determine, but Island Health counts about 15,000 patients over 65 with dementia.

Meanwhile, demographic estimates of the gay population on Vancouver Island vary. In 2009, a Statistics Canada countrywide survey reported that two per cent of respondents said they were gay. A 2011 survey in the U.S. by the University of California reported four per cent.

Applied to the 15,000 Vancouver Island dementia patients, the numbers of gay people with dementia likely ranges between 300 and 600.

Experts say for many of them, dementia can bring on a special kind of horror.

Dr. Marilyn Malone, an Island Health geriatrician and medical director of senior’s and spiritual health, said gay dementia patients over 65 undergo an experience similar to Holocaust survivors or former prisoners of war who develop dementia.

For example, Alzheimer’s disease, the most common cause of dementia, robs people of their most recent memories first. So recent recollections of acceptance from their families and community will vanish.

“They will be remembering earlier, more homophobic experiences,” said Malone. “For these people to come out of the closet it was the end of a job, of being excommunicated from their community, their church, their family.”

“That’s not something that is easily shuffled off. They [gay seniors with dementia] are from a different culture than younger people who are gay.”

Meanwhile, partners of these dementia patients often have to deal with a special type of isolation. Many gay seniors don’t have children and family connections may have frayed or been lost. And they can be reluctant to turn to organizations like churches or the Alzheimer’s Society of B.C., said Malone.

“Imagine, you don’t have the same family connections, you don’t have children of your own — a lot of them don’t. It must be difficult,” she said. “And no one can handle it as a lone caregiver for a demented spouse.”

“Even the general population is still learning about the basics of Alzheimer’s disease,” said Malone. “It is one of the most feared diseases and I still don’t think dementia gets the respect it deserves in certain branches of the health-care system.”

“And its prevalence is skyrocketing with the aging population,” she said.

Kara Turner, support and education co-ordinator with the Alzheimer’s Society of B.C. in Vancouver, said since January her agency has operated a special Rainbow Caregiver Support Group for caregivers within the LGBTQ (lesbian, gay, bisexual, transgendered and queer) community.

Right now, the group has 12 members but the Alzheimer’s Society thinks it will grow because there is a need.

 

Turner said her agency has often tried to offer specialized support. Groups exist for spouses of dementia patients, adult children of dementia patients, family members living in care facilities and now a support group for care-givers of gay people with dementia.

“Everybody is different,” she said. “It’s different if you are caring for a spouse or you are caring for a parent or if you are caring for spouse of the opposite sex of the same sex with dementia.”

“What we were hearing from the LGBTQ community, they feel like they have to come out all over again and explain themselves in a regular group,” she said. “They even have concerns for their safety in a group with other caregivers.”

Turner said for gay seniors it can be worrisome to find caregivers to work in their homes and provide some support. What if the caregiver is not “gay friendly?”

Or, how does any person check out care facilities to find one that is gay friendly for that time when a gay dementia patient can no longer live at home?

It’s issues like these that prompted the Alzheimer’s Society of B.C. to form the Rainbow Caregiver Support Group.

‘There are some very difficult issues that come to their table and we wanted to create a safe, supportive environment for everybody,” said Turner.

For the gay man from Saanich who lost his partner, some emotional relief came by way of a Victoria social group for gay seniors. There was one man there who, despite being gay, had been married and his wife suffered from dementia. He remained with his wife to the end.

That man told stories of how his wife would wander off at night in the rain and remember nothing when she was returned and how she just kept on getting worse.

“And he would tell me, ‘Whatever you do, don’t ever think for a minute there will be a change because it won’t happen,’” said the Saanich man.

“Of course, he was right, but the support for me was the fact he understood what I was going through.

“I realized afterwards how helpful he was to me. I think of him now practically everyday and I say, ‘Thank you for helping me.’ ”

rwatts@timescolonist.com