Caring for LGBTQ Care Partners

Zander Keig knows there is a possibility his father, who lives with vascular dementia, may soon forget he has a son. But he also worries that, as a post-transition transexual man, he may face an added dilemma that not all care partners to persons living with dementia will face.

“I’ve started to think about the possibility that there will come a time when my father wants to know where his daughter is,” Keig says. “That seems, to me, to be uniquely a trans caregiver experience.”

Although it’s hard, Keig has accepted that someday his father may only recall memories of him pre-transition, since he knows vascular dementia can bring with it memory loss and confusion. “We're all going to be handling that in a different way, and my hope would be that we handle it with grace and compassion.”

Zander Keig, co-founder of the LGBTQ Caregiver Center

Other care partners in the LGBTQ community experience their own unique challenges. According to Emory University’s Goizueta Alzheimer’s Disease Research Center in Atlanta, statistics show that up to 45 per cent of LGBTQ people in the United States care for a person with a chronic illness, whether it be dementia, cancer or another ailment. LGBTQ people are also more likely to be high-intensity care partners, meaning they will have to perform more medical and nursing tasks such as helping someone go to the washroom, changing colostomy bags or caring for wounds. In addition, compared to non-LGBTQ care partners, they have higher rates of physical, emotional and financial strain and are less likely to seek help due to the fear of discrimination and poor-quality services.

“We feel like if we can improve caregiver well-being, then the caregivers are better positioned to give high-quality care to the person they are caring for."

– Jennifer Henius

Jennifer Henius, co-founder of the LGBTQ Caregiver Center

An award-winning social worker with a rich history of LGBTQ advocacy, Keig saw the need to address these specific challenges. He, along with LGBTQ ally, fellow caregiver and social worker Jennifer Henius — whose background includes serving on the leadership team at the National Caregiver Support Program at the United States Department of Veterans Affairs — co-founded the LGBTQ Caregiver Center, a virtual hub where LGBTQ care partners can seek resources, information and services meant to enhance their health and well-being. The duo is backed by an advisory board made up of LGBTQ community members, allies and care partners.

The LGBTQ Caregiver Center is an initiative of the Caregiver Wellness Collective. Image courtesy of Jennifer Henius.

The LGBTQ Caregiver Center is an initiative of Caregiver Wellness Collective Inc., a non-profit start-up based in Tampa Bay, Florida. Also founded by Henius, the collective aims to provide holistic wellness education and services to care partners in general.

“We feel like if we can improve caregiver well-being, then the caregivers are better positioned to give high-quality care to the person they are caring for,” Henius says. “We are talking about nutrition, we’re talking about mindfulness, sleep, physical activity and body movement.”

The LGBTQ Caregiver Center offers holistic wellness workshops and training, yoga classes (Yoga4Caregivers), retreats and other events made to support care partner well-being. Additionally, it provides LGBTQ cultural competency training and LGBTQ caregiver-focused training for small businesses, community agencies, medical and human service providers, and other organizations to educate about how to meet the specific health and wellness needs of LGBTQ care partners.

“We're a non-profit in the U.S., but our services right now are being held inside a Facebook group, and so, we leave that open to whoever self-identifies as a caregiver to come and practice [wellness] with us,” says Henius.

“It can be very isolating being a caregiver. Knowing that we don't have to be alone, whether we're connecting on a breathing exercise webinar together, or yoga or stretching, or just sharing our story can make all the difference.”

– Zander Keig

LGBTQ community members can access Yoga4Caregivers to explore the self-care practices of yoga, meditation and mindful movement. Image courtesy of Jennifer Henius.

Volunteers from around the world showed immediate interest when the Yoga4Caregivers Project launched in March 2020, with people from Amsterdam, Mexico and Spain reaching out in support. A little more than a year later when the LGBTQ Caregiver Center initiative launched during Pride Month in June 2021, it too created a lot of international buzz. Now, with an expanding network, including a potential partnership with a major Canadian care partner organization, more widespread access to support for LGBTQ care partners of persons with dementia may not be far off.

“If you're LGBTQ-identified and you’re a caregiver, you can look in the directory to see if there's anything close to you ... to find a group to connect with or a place that has whatever resources you might need,” says Keig.

Another matter Henius and Keig are looking to address is the research gap concerning LGBTQ care partner experiences. To this end, the center is working with researchers at Emory University on the Equality in Caregiving study, which aims to better understand the needs of LGBTQ care partners of people with dementia.

The study, which began in May 2021 and is scheduled to end in June 2022, is designed to collect data from LGBTQ care partners using online questionnaires, instructional videos and discussions, and a focus group. The center is helping researchers by distributing information and promoting the study. It plans to partner with more researchers and universities to help promote future studies and to serve as a pipeline connecting care partners to researchers.

While the center experienced widespread interest and network expansion in its first few months, Henius says it needs help moving forward. “We are all volunteers. We do this out of pure passion,” she says. “We have big visions, but we don't have funding and so there's only so much we can do.”

Those interested can get involved through the LGBTQ Caregiver Center website, where they can sign up to volunteer, become a sponsor or partner, join a research study, donate or simply share their LGBTQ care partner story.

“We need to let people know that we're out here. Once we can connect with caregivers directly and we can help them share their stories, that'll make it so much easier for other caregivers to come forward,” Henius says. “We want them to know that they’re not alone and that they can ask for help.”

Keig says the LGBTQ Caregiver Center’s ability to connect people in the care partner community may be most important.

“It can be very isolating being a caregiver,” he says. “Knowing that we don't have to be alone, whether we're connecting on a breathing exercise webinar together, or yoga or stretching, or just sharing our story can make all the difference.”