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Trans-Inclusivity in Alzheimer's Care with the Human Rights Campaign

Trans-Inclusivity in Alzheimer's Care with the Human Rights Campaign
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June 27, 2022
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Dan Stewart of the Human Rights Campaign (HRC) Foundation is a proud Latino, Indigenous, queer, transgender man, and gerontologist. Dan has a decade of experience in the field of aging, doing dementia-related research in long-term care before moving into LGBT advocacy. "My heart has always been drawn toward aging. It's through my professional experience that I have been given the gift of meeting people with Alzheimer's and as they ARE with Alzheimer's," Dan shares. 
The LGBTQ community faces particular challenges related to Alzheimer's and dementia. These include finding inclusive health care providers, less ability to call upon adult children for assistance, concerns about stigma and higher rates of poverty and social isolation. The transgender (trans) community often live in isolation, hiding their identities as a coping mechanism, which prevents them from getting the care they need. “As I was growing as a gerontologist, trans human, advocate and activist, I realized that we have to support those who are overlooked,” Dan says. “There has been a lot of movement in the long-term care field, with LGBTQ folks being more recognized over the past five years. People are seeing the needs of the community."

The Importance of Inclusive Dementia Care

When Dan started his career in skilled nursing, he had the benefit of being involved in care home activities. "I didn't know people prior to their diagnosis,” Dan says. “It was such a gift to get to know these people’s spirits in an environment where I could help support their longevity so they can live their best lives.” 
And over the past five years, there has been a lot of movement in the LGBTQ advocacy field, which gives Dan a lot of hope. “In health and social services, there is a stronger emphasis and recognition of wanting to recognize the differences and challenges for trans people, and what I have found through my work with HRC is that most providers want to provide that person-centered care.” Despite the struggles and difficulties along the way, ultimately, Dan says trans people are doing their best to live as authentically as possible. “And we must support people where they are on their journey.” He notes that we all have trans people in our lives, people we love and need to support. “Trans people are our friends, family, neighbors and colleagues. They are part of the community.” 
As a society and culture, Dan believes seeing people as they are is integral to getting people access to the care they need, and addressing those needs. “It’s really heartening to see movement and desire from the people in the community and our allies,” he says. This said, there is an overlap amongst the aging population in long-term care, and Dan hopes trans people will be seen for the diversity they bring as individuals, and that those who provide care will recognize that the trans community is made of many people on very different journeys, not dissimilar to the unique experiences of those living with Alzheimer’s and dementia. “For a lot of older transgender people, they may have not had the time, space or language to come out until much later in their lives. We must treat them with the dignity they deserve.”
While there is a lot of promise, and a lot of work being done, Dan says that there are still gaps. “We must cultivate relationships and be in this together. When people are hidden in the closet, they may not seek out the care they need. And because of the social and political lifetime stressors LGBTQ community members experience, trans folks in particular have a higher risk of disability and chronic illness.” Dan knows that many members of the trans community and their loved ones fear they won't be able to get care, or be accepted into a care home. “This often comes back to policies not being in place for the trans community, and while it may not seem like an easy ask, in theory, it should be,” he continues. “Long-term care should be able to provide care for all who come through the doors.”

Moving Dementia Care Forward

In his experiences, Dan says he has learned that the best practice for LGBTQ people with dementia is to meet them where they are. “Today, Sam is Sam. Two days from now, Sam may be Samantha. It’s just checking in with people, like asking them if they want to wear a sweater if they have a chill. I've found that people living with Alzheimer’s and dementia will often answer if you ask them about themselves, their opinions, their views. Keep asking.” 
It is difficult to predict what LGBTQ aging will look like for each person, so it necessitates community partners and organizations like HRC to educate the older community as whole. “If they get to a place where they can no longer make decisions for themselves, we can help them find a support system. Trans elders often find themselves alone as they age, having to rely on people of the same age for care,” Dan says. 
Dan wants people to know this: There isn't a lot of certainty in this world for trans people. That is why we collectively need to focus on how we can help the trans community today, and going forward. “In a world that was not made for us, that is often challenged by the very existence of us, people often make unfair conclusions,” he says. “We are legitimate. We are part of your community. It comes down to wanting to support people and give them the respect we all deserve as we age.” 
Dan notes that the trans community has not had a model of how to live successfully in long-term care, but in collaboration, we can be ahead of the curve when it comes to inclusivity of trans elders. “We know there has been a lack of acknowledgement, and now that more people are out, we need to be prepared. HRC and the Alzheimer’s Association have something very important in common — we care about people. That makes all the difference in the world.”

The Human Rights Campaign and the Human Rights Campaign Foundation make up the largest civil rights organizations for LGBTQ individuals in the United States. The Alzheimer’s Association and Human Rights Campaign (HRC) partnership is aimed at providing Alzheimer’s disease information and resources to LGBTQ communities. Learn more about the Human Rights Campaign.

About Dan: Since 2014, Dan has proudly been working with the Alzheimer’s Association in a variety of ways, beginning with the Greater Missouri Chapter of the Alzheimer’s Association. With hobbies including cross stitching quotes from the TV show “The Office,” Dan also plays guitar, bass and ukulele, the latter of which he played 20s, 30s and 40s songs with during singalongs for memory care home residents. Dan leads the Long-Term Care Equality Index, which promotes equitable and inclusive care for LGBTQ older adults in long-term care. He received his M.S. in Gerontology from the University of Missouri-St. Louis. He and spouse Katie have two dogs who keep them on their toes!

LGBTQ Resources for Dementia

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