Caregivers for those with dementia tend to experience isolation, a loss of sense of self, and a lack of time for other relationships and activities. Grief and guilt can come with such an unwelcome change, and family issues can arrive when family members disagree over care and end-of-life planning.
As crushing as all of this can be, caregivers in the LGBTQ community often are left to tackle a greater number of challenges.
Eighty percent of support given to a primary caregiver tends to come from families, but caregivers who are lesbian, gay, bisexual, transgender or queer are half as likely than heterosexual peers to have family members to lean on.
“Then they need to rely heavily on professional health care providers: doctors, hospitals, nursing homes,” said Deanna Bednarz, new caregiver wellness coordinator with the Pride Center of Western New York. In some cases “there are care providers who may be uncomfortable, or even hostile, toward LGBTQ elders, or they’re not trained to work with them.”
These caregivers, and those they care for, can be further ostracized by some in their age group brought up to see an LGBTQ way of life as flawed, Bednarz said. Other medical and legal barriers also can be thrown in their way.
This is why the Pride Center launched the LGBTQ Memory Loss Caregivers Program.
“The goal of this initiative is to provide a safe space for LGBTQ caregivers for those with dementia,” Bednarz said. “At the Pride Center we understand the unique circumstances that individuals face within the community. Whether you need support, education or a referral plan, our objective is to guide caregivers through a challenging time.”
The program will host its first memory loss caregiver support group meeting from 5:30 to 6:30 p.m. Tuesday at the Pride Center, 200 S. Elmwood Ave. Additional meetings will take place the third Tuesday of each month at the same time and place.
“Talking to a professional is one thing,” Bednarz said. “Sitting down and talking to somebody going through everything that you are is something completely different, whether you’re in the LGBTQ community or not.”
The first meeting will involve introductions, sharing of stories and helping to set the stage to develop strategies to better tackle caregiving. Future meetings will involve more of the same, as well as visits from experts who can help.
“It’s important that caregivers take care of themselves, too, and make themselves a priority,” Bednarz said.
Bednarz once worked with the Alzheimer’s Association of Western New York to bring off the Blondes vs. Brunettes fundraiser. She started with the Pride Center four months ago. The program she leads will provide caregiving resources to those in the LGBTQ community, as well as help train health care-related businesses about how best to serve those who are lesbian, gay, bisexual, transgender or queer. Those interested may call 852-7743 or email firstname.lastname@example.org. More information also can be found online at pridecenterwny.org.
The Pride Center has received a five-year, $100,000 Underserved Communities Grant to start the new caregiving program. Several other organizations in the region that serve underserved people got similar grants.
State leaders are aware that the cost of Alzheimer’s and other dementia is expected to approach $250 billion nationally this year, according to the Alzheimer’s Association.
“The diagnosis of dementia is often a precursor to institutional placement,” Bednarz said. “The goal with these grants is to keep loved ones home for as long as we can.
“This program means a lot to us and we’re looking forward to helping more people.”
Twitter: @BNrefresh, @ScottBScanlon