Disrupting Disparities for LGBTQ Older Adults in Illinois

Disrupting Disparities for LGBTQ Older Adults

Groundbreaking New Legislation Will Break Down Barriers for LGBTQ Older Adults, People Living with HIV in Illinois

AARP Illinois commends lawmakers for passing measure inspired by report organization commissioned with SAGE last year

On behalf of 1.7 million members across the state and all adults 50-plus, AARP Illinois commends the bipartisan passage of SB3490, “The Disrupting Disparities for LGBTQ Older Adults Bill.” LGBTQ people and people living with HIV have long faced unique challenges as they age because of a lack of affirming resources and services, and stigmatization, and this bill is an important step in ensuring that their voices are represented in state programming and policymaking.

AARP Illinois applauds the work of bill sponsors, Senator Karina Villa and Representative Lakesia Collins, who championed the passage of this bill.

The passage of SB3490 will:

  • Create a 3-year Illinois Commission on LGBTQ Aging;
  • Require the Director on Aging to appoint an LGBTQ Older Adult Advocate to ensure the needs and experiences of LGBTQ older adults and older adults living with HIV are considered and incorporated throughout the department’s programming and policymaking; and
  • Require state-funded service providers to complete LGBTQ older adult awareness and competency training.

The legislation will ensure continuity of the groundbreaking work of the Illinois Department on Aging under the leadership of Director Paula Basta, in support of LGBTQ older adults and older adults living with HIV.

“LGBTQ older adults face unique challenges, and we want Illinois to lead in valuing their identities, expanding access to inclusive services, and meeting the critical needs of this population,” said Director Basta. “I’d like to thank AARP Illinois, Pride Action Tank, Equality Illinois, stakeholders, and our legislators for affirming the administration’s continued commitment to supporting LGBTQ elders in our communities.”

This legislation solidifies years of work by advocacy organizations who supported this bill, including AARP Illinois, Equality Illinois, Pride Action Tank,  the AIDS Foundation of Chicago, Center on Halsted, and SAGE.

“LGBTQ older adults are a key part of Illinois’ rapidly growing elder population, and yet they remain largely invisible,” says Mary Anderson, Director of Advocacy and Outreach – Northern Illinois for AARP Illinois. “This bill is a critical step to break down barriers to access and to address the disparities faced by older LGBTQ adults, especially for the 1 in 5 LGBTQ older adults of color for whom those disparities are compounded.”

“More than half of people living with HIV in the United States are over the age of 50 and face innumerable challenges as they progress in their later years including stigma, isolation, and various comorbidities,” said Timothy Jackson, Director of Government Relations for AIDS Foundation Chicago (AFC). “AFC and Pride Action Tank are proud to support SB3490, critical legislation that will address some of these challenges faced by LGBTQ older adults and older adults living with HIV head on.”

“We must tackle the disparities LGBTQ+ older adults and older adults living with HIV face. By directing resources, training, and attention to meeting the needs of this critical population, SB 3490 helps make sure Illinois is a more affirming and equitable state for LGBTQ+ older adults and older adults living with HIV,” said Mike Ziri, Equality Illinois Director of Public Policy. “We applaud the leadership of Sen. Villa, Rep. Collins, and the Illinois Department on Aging for shepherding this bill to the Governor’s desk.  And we are grateful to the broad coalition of partners from across the state who helped build the case for this important law.”

“SAGE applauds the hardworking advocates on the ground in Illinois and our champions in the legislature, particularly Sen. Villa and Rep. Collins. Thanks to their leadership, Illinois continues to be at the forefront of making sure that LGBTQ+ older people and older people living with HIV receive the culturally competent aging services and supports our community deserves,” said Lynn Faria, Executive Vice President at SAGE. “LGBTQ+ elders will continue to have a voice both alongside and within the Illinois Department on Aging.  We look forward to Governor Pritzker signing this bill into law.”

LGBTQ advocates across the state expressed enthusiastic support for the passage of the bill:

“The passage of SB3490 of represents a pivotal moment for LGBTQ older adults across Illinois. Not only does the Commission on LGBTQ Aging represent a historic recognition of LGBTQ elders, but it represents an investment in the future of the entire LGBTQ community across our state,” said August Hieber, Manager of Advocacy & Programs at The Chicago Bar Foundation. “As a transgender Illinoisan, I am so grateful to Representative Collins and Senator Villa for centering the histories and experiences of the older adults in my community.”

“As an LGBTQ+ elder, and native-born Illinoisan, I am proud of the long history that the Prairie State has in progressive legislation that has made this state one of the minority of U.S states where  LGBTQ+ citizens enjoy full civil rights,” said Don Bell,  LGBTQ+ Elder and Advocate. “In stark contrast to the legislatures of many states across the country where LGBTQ+ rights are currently under assault, Illinois continues to reinforce the rights of all members of our community, whether they reside in the Chicago metropolitan area, or in the downstate, small town, rural, or exurban parts of Illinois. The Great State of Illinois is a great place to call home!”

“I salute everyone who had a role in getting the LGBTQ 50 + Older Adults Bill passed,” said Billy Rogers, co-founder of the Golden Rainbows of Illinois South (GRIS), a group formed in 2021 through the Rainbow Cafe LGBTQ Center in Carbondale. “My spouse of 32 years is 87 years old and I am 66 years old. You might say I am in the ‘fourth quarter’ and my spouse is in ‘overtime.’ We are living in this culture of disparity, having been victim to insults and discrimination, but we celebrate this moment.  GRIS is now working to provide programs and resources for the aging 50+ LGBTQ seniors throughout Southern Illinois.  As co-founder of GRIS, I realize the work is far from over.”

The solutions in SB3490 are based on findings from a ground-breaking report from AARP Illinois and SAGE, Disrupting Disparities: Challenges and Solutions for 50+ LGBTQ Illinoisans, as well as the work of advocacy organizations and direct service providers that serve LGBTQ older adults and older adults living with HIV in Illinois.

As a critical final step, AARP Illinois encourages Governor Pritzker to sign this meaningful bill into law.

SAGE Dedicates $1 Million to Support Trans Elders

Transgender and Nonbinary Elder Program Equity Fund

SAGE, the world’s largest and oldest organization dedicated to improving the lives of LGBTQ+ elders, recently announced the Transgender and Non-Binary (TGNB) Elder Program Equity Fund. The decision to create the Fund emerged following SAGE’s collaboration with Trans Equity Consulting (TEC), led by Cecilia Gentili and Cyd Nova, to develop theorganization’s strategy to build more TGNB-related services and advocacy for elders.

The TGNB Elder Program Equity Fund will dedicate $1 million to support TGNB-focused services and advocacy at SAGE, both in New York and nationally. These opportunities are vital to TGNB members of SAGE’s community, as trans older people are at a higher risk of discrimination, marginalization, health disparities, and poverty as they age.

“It feels particularly appropriate to announce this initiative during Trans Week of Awareness because the need to amplify and recognize trans experiences is the very core of the TGNB Elder Program Equity Fund,” said SAGE CEO Michael Adams. “Decades after Stonewall, which was led by TGNB people, TGNB elders are still pushed to the margins in society and even within the communities they helped to create.

“Equality cannot be achieved without action to dismantle the anti-TGNB oppression that many of our transgender and non-binary elders still face today. The TGNB Elder Program Equity Fund is what that action looks like,” said Joanna Rivera, SAGE’s Manager of TGNB Outreach & Community Engagement.

“This initiative allows us to continue honoring our TGNB elders while they are still with us, letting them know that we see them and embrace them as valuable members of our community.”

“Transgender and non-binary elders have survived and fought for equality in various capacities over the years, and this recognition through the TGNB Elder Program Equity Fund is a definitive step towards the respect, change, and acceptance we deserve,” said SAGE constituent Sandi Salas.

The TGNB Elder Program Equity Fund was created with a gift from the Estate of Jack Dowling to honor his friendship with legendary transgender activist Marsha. P. Johnson. The two formed a bond from their time spent together during the community heyday of Chelsea Piers and became close acquaintances and kindred spirits. Dowling, who passed away in February of 2021 due to COVID-19 complications, wanted Johnson’s legacy to live on for trans elders for years to come through his generous gift to SAGE.

Best Practices for Working with LGBT Elders

LGBTQ Older Adults

Lesbian, gay, bisexual and transgender (LGBT) populations, in addition to having the same basic elder care needs as the general population, experience disparities and barriers related to sexual orientation and/or gender identity or expression. Many avoid, delay, or receive inappropriate or inferior care because of perceived or real stigma and discrimination by care providers and institutions. The stigma associated with sexual orientation and gender identity impedes access to important programs, services and opportunities.

Below is a recommended set of best practices based on recommendations made in a nationwide report titled “Improving the Lives of LGBT Older Adults” released by Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders (SAGE), a national organization that provides services and advocacy for GLBT elders. These best practices will help reduce some of the stigma LGBT elders face and will improve culturally competent service delivery.

General

• Sexual orientation and gender identity are, like certain other demographic and personal characteristics, relevant to health care delivery; some illnesses including breast cancer and depression are more prevalent among LGBT populations and LGBT patients are less likely to have accessed regular screenings.

• Every person has their own sexual orientation and gender identity. These are two distinct identities that describe a particular person. So, for example, while a non-transgender person can be straight, gay, lesbian or bisexual, so too can a transgender person be straight, gay, lesbian or bisexual.

• If a patient or care recipient does disclose his or her sexual orientation or gender identity to you, this information should be treated with great sensitivity, respect and confidentiality. If his or her sexual orientation or gender identity is relevant to the care they are receiving, this information should only be disclosed to others on a need to know basis.

• LGBT elders are more likely to be single, childless and estranged from families-of-origin; LGBT elders may well have developed “families of choice.” Consequently friends and partners of LGBT patients and care recipients should be given the respect and access usually given to a spouse or relative, where legally permissible. Medical practitioners should be sensitive to a possible need for caregiver assistance at home.

Intake

• Approach the interview showing empathy, open-mindedness, and without rendering judgment.

• Intake forms should use the term “relationship status” instead of “marital status,” including options like “partnered.” When asking—on the form or verbally—about a patient’s significant other, use terms such as “partner,” in addition to “spouse” and/or “husband/wife.”

• Respect transgender clients by making sure all office staff – especially staff charged to process intakes – are trained to use a patient’s preferred pronoun and name. The patient should be asked to clearly indicate this information on their medical record in a manner that allows the health provider to easily reference it for future visits.

• Consider adding a “transgender” option to the male/female check boxes on your intake form. This will help capture better information about transgender clients, and will be an immediate sign of acceptance to that person. Do not list transgendered as an alternate sexual orientation (like lesbian, bisexual, or heterosexual). Gender identity and sexual orientation are distinct.

• Ask LGBT seniors (clients) about a personal history of hate crimes/violence. As you may already know, victims of violence are at increased risk of post-traumatic stress disorder. Depression and anxiety are also more prevalent among LGBT persons, a probable result of stigma and discrimination.

Office Environment

• Disseminate or visibly post a non-discrimination statement stating that care will be provided to all patients, regardless of age, race, ethnicity, physical ability or attributes, religion, sexual orientation, and/or gender identity and expression.

• Providers should create a welcome and friendly environment for LGBT staff and patients and should refer patients to competent providers when follow-up or specialist visits are necessary.

• Healthcare providers, including nurses and volunteers in medical, social and housing facilities should be trained on factors that affect older HIV-positive patients, sexuality, isolation, stigma, comorbidity issues and others.

• Include LGBT specific media, signs and posters that include relevant information for LGBT persons in public areas.

• Provide in-depth training for staff members on the impact of homophobia and its effects on providing culturally sensitive care for LGBT patients. Proper use of language is also vital in establishing a welcoming environment.

• Participate in provider referral programs through LGBT organizations.

• Do not list transgender as an alternate sexual orientation (like lesbian, bisexual, or heterosexual). Gender identity and sexual orientation are distinct.

Udo Kier and Michael Urie on their queer cross-generational bond in ‘Swan Song’

Arthouse icon Udo Kier and co-star Michael Urie on their moving, queer cross-generational bond in ‘Swan Song’

An Aging Queen Gets His Swan Song
By Chris Azzopardi

Swan Song is available on Amazon Prime

German character actor Udo Kier is on camera holding old prints of press photos from his previous films over his face like a Halloween mask. He jokes that if a journalist dare ask a terrible question that he considers daft, the photos, not Kier himself, will answer back. Luckily those prints never made their way back onto camera during our conversation, which also included his “Swan Song” co-star Michael Urie.

“Swan Song,” the new film from openly gay “Edge of Seventeen” director Todd Stephens (“Another Gay Movie,” “Another Gay Movie 2: Gays Gone Wild”), wouldn’t be the film it is without Kier’s brilliant performance at the heart of it. He’s a leading man for the first time, rightly earning him some of the biggest buzz of his 50-year career. But there’s no question the film’s bittersweet coda, a scene that serves as an elegiac tribute that Kier shares with Urie (“Ugly Betty”), is something special in its own right. Poignantly, it honors older generations of unapoletically queer elders who enriched the lives of younger LGBTQ+ populations, demonstrating that, without them, queer life now wouldn’t be the same. 

Though Kier, also openly gay, has appeared in more than 220 films over the span of five decades (among them: almost all of Lars von Trier’s films, as well as Dario Argento’s “Suspiria” and Gus Van Sant’s “My Own Private Idaho”), he’s never played a character as proudly gay as Pat Pitsenberger, a legendary Ohio hairstylist known as the “Liberace of Sandusky.” Women loved Mr. Pat, as he’s called, for making them look, and consequently feel, beautiful.

Now in his advanced years and living in a nursing home, retired from doing hair, he’s more than earned the right to be a bitter old queen. Mr. Pat survived the AIDS epidemic, lost friends, was at the forefront of gay liberation. In this new gay world, he’s an outsider all over again, his glory days behind him. But when one of his former clients dies and he’s asked to do her hair, he has an opportunity to reclaim the history that made him who he is.

Kier, speaking from Los Angeles, and Urie, at home in New York, recently chatted about shooting their powerful scene, what attracted them to the film and the legacies they hope to leave behind.

What made you agree to do this project?

Udo Kier: For me, I got the script and I liked it. I said, “I want to meet Todd, because I want to see if I can work with him.” If I wouldn’t have liked him, I wouldn’t have made the film. But I liked him.

He came to Palm Springs, and we talked about it. His script was very strong. And I wanted to shoot as chronologically as we could. I wanted to start in the retirement home, which we did. I stayed there a single day on my own with no camera, because I wanted to feel the bed, I wanted to see where everything was. And then we went into town.

For me, the importance (of) this film is the different generation — my generation — and going back (to Ohio), and people don’t recognize me anymore. You see, I’m from Germany, and in Germany … if two men lived together, and the neighbors were hearing some erotic noises, they could call the police and the people were arrested and put in jail. Now they’re holding hands at Applebee’s.

So I think it’s so, so wonderful (that) in (a) relatively short time, two men or two women can get married and adopt children. It’s amazing. It’s amazing that, after 50 years in the business working with genius directors like Lars von Trier and Gus Van Sant, the critics now write that it is my best film.

Michael Urie: It was Udo from the beginning. When I was offered the job, he was already on board. That was very exciting to me, ’cause I’ve been a longtime fan of both the filmmaker, Todd, and Udo. But it’s this quiet observation that we as queer people have when we’re younger. Most queer people do not grow up in households with other queer people, and so we look elsewhere to find ourselves to see what we could be.

Michael, your character Dustin acknowledges that Pat, even though they had never met, made it easier for him to be openly gay. Who are the queer people you never personally knew who paved the way for you to be openly gay?

Urie: I’m from Texas, and I grew up in a suburb of Dallas called Plano, Texas. I was in drama in high school, and I was reading great queer literature and (there was) theater: “Angels in America” and Terrence McNally plays. I was exposed to this stuff, and I was aware of it and titillated by it. But there was a guy in my high school who was tall, strapping, extremely well dressed, very attractive, and pretty obviously gay. When I picture him in my head, he’s 30, even though he was, of course, 17 at the time. I looked to him and his strength and his power and his beauty. He was, in many ways, my Mr. Pat. I still think back on him. I still think about how awesome he was.

As gay men, do either of you see parts of yourself reflected in Pat?

Kier: I think, first of all, Michael, you did amazing, good work. (Our) scene on the couch works so well because I don’t move one inch. If I would have had a conversation, that would have been not good. But just having the cigarettes with the ashes, and listening, listening, listening made it stronger than if I would have answered you.

I’m more like an actor who likes to underplay (the character). That’s why, also, I never rehearsed with Todd, because Todd is a director who likes to rehearse. I learned from Lars von Trier, (whose) favorite line is, “Don’t act.” I always think about, especially if you’re in a movie like “Swan Song,” when you have a strong story, a strong situation, which is funny at times, and sad at times, there’s no need to do acting numbers. A lot of actors, they’ll start with their back to the camera, by the chimney, and then they’ll turn around and they’ll talk to the floor, and finally they’ll come up to the camera. No, no, no, no.

Yesterday I saw 20 minutes (of “Swan Song”), and today I will see the whole film at Outfest, and it’s a strong film. I hope a lot of people will see it. I showed it before to a few friends. Not many. I don’t have many friends. But I showed it to a few friends, and they all said, “Oh, I cried and cried. And I laughed.” So that is good. If you’re able to tell a story where people laugh and cry, that’s good.

It’s amazing how many really young people liked the movie. You know, I was afraid that (they’d say), “There’s an old man.” But it’s not true. There were young, young people. And one girl, yesterday, said to Todd, “This is one of my favorite films ever.” And I said, “Wow. Maybe she only goes once a year to the cinema.”

I got choked up throughout the movie thinking a lot about my older self and what I might be like when Im Pat’s age, how I might look back on my life. Do you feel like you share something in common with Pat when it comes to being gay and aging?

Kier: That’s why I accepted the role. Todd told me a lot about Pat and when I got there (to Sandusky) I talked to Pat’s friends and (they) told me how he was smoking and things like that. It’s definitely the generation, and we’re very lucky that in Sandusky, the main street became our set. So in that green suit, I went to have a glass of chardonnay, and they all know me. There was the secondhand store and across the street was the theater, so it became all real. It was not a film where you have trailers. No, no, no, no. It was a real film. It was all from my heart. It wasn’t calculated. I never in the whole film calculated a situation. When I come out and say, “I’m back!,” that was a copy of Liberace. Because when Liberace was performing in Las Vegas, he ran through the stage with all (his) rings and said, “You paid for them.”

Because this movie says a lot about the legacies we leave behind, how do both of you hope others will remember you?

Kier: Well, in my case, because Mike is so much younger, doing it for 50 years, being Andy Warhol’s Dracula, Andy Warhol’s Frankenstein, people will, I guess, remember me (for those roles). But, for me, it’s really amazing that Variety and all the critics write that (“Swan Song” is) my best film. I feel a little bit strange about that. Making so many films with great directors, like “My Own Private Idaho” with Gus, and now they write it’s my best film. I know why. You know why? Because I have the leading part, and you follow the character. If you have a guest part in a film, people say, “He’s very good. He’s a good villain, yeah, yeah, yeah.” But they cannot follow you through the story, from folding napkins to wearing wonderful shoes when he’s dead (laughs).

Urie: I guess I want my legacy to be: “He was part of cool things. And he was always himself.” I’ve been in a lot of queer movies and queer theater and —

Kier: Strange movies.

Urie: (Laughs.) I’ve been in a lot of strange movies. And there was a point when I was first on TV and I was playing a very flamboyant gay character and I was told, “Don’t do this again. Don’t do any more of these. Don’t get pigeonholed.” And I thought, “There’s so many different kinds of gay people.” And I do play gay parts all the time, and they are different. We have so many different ways of being LGBTQ, and there are so many stories to tell.

I’m so proud to be part of this one, which I saw with a group at the Rooftop Film Festival in Brooklyn (with) a group of predominantly heterosexual people who loved it. That is a really exciting thing, too, to be a part of a movie that you would maybe call a gay movie because the protagonist is gay and the central conflict has to do with his homosexuality, but this is a straight person’s gay movie. Straight people love it. I think that’s a testament to Udo and a performance at the center that can compel and delight and break your heart. It’s a piece of life, watching it. And working on it felt like walking into the movie.

As Udo said, we took over that town — or they took over that town, and I showed up. I showed up at a certain point in the shoot and I felt like I was walking into a movie — not onto a film set, but into a movie. There he was in his green suit, and we didn’t talk much before we started shooting. He wanted our first interaction to be our first interaction. I’m used to going on stage and making people laugh, and here I am in this movie, reacting to a person. This is a guy walking into my space, and it was actually very easy because he was bringing so much over to me.

Michael, what do you think this film says about aging, in particular regarding the queer demographic?

Urie: That’s very interesting because now the way queer people navigate the world — marriage, parenting — there is a more traditional society-based way of getting older. An older person gets taken care of (by) family and loved ones. But I think all of us as queer people, we’re not going to have a life that society deems as normal. That is one of the things that we fear: that we will grow old alone or have no one to take care of us. Certainly it’s a fear that I have and I think about.

But what’s so beautiful about Mr. Pat and the way in which I relate to Mr. Pat is that, even though now it’s 2021 and queer people are accepted — I can walk down the street holding hands with my partner and I don’t feel any shame anymore or any danger, and I actually feel proud to do that; we’re legal, we’re allowed to marry, we’re allowed to have kids, we have full protections under the law, for the most part, I can blend in, I can assimilate — I don’t want to.

I think that is something that the older generation, when marriage equality became a thing and when people started getting married, thought, “Why would we need that? We’ve been fine without that. We don’t wanna be like straight people; we don’t wanna get married.” It’s two different things. It’s the right to be married, versus the need to be married. Also, I’m proud of who I am, and I’m proud to be different, and I don’t need to assimilate. I can be someone else. I think that I want to always have a little bit of Mr. Pat. I don’t wanna walk down the street and have people think, “That’s a straight person.”

Kier: (Laughs.) You have to get a green suit! Get a green suit and just smoke like (him).

Yesterday I looked up, because I hear (it) now so many times, the word “queer.” I wanted to look in the dictionary (to see) what it means. And queer means, actually, strange. If you go on the dictionary, it says queer means strange. Um, (I) definitely did a strange performance. (Laughs.)

So you might call your performance queer?

Kier: Not me. It’s just a performance. It’s not my swan song. I have made already four films after that. And so it’s not my swan song. That was the danger of it: I thought, “Oh my god, ‘Swan Song.’ I’m 77 years old soon, so is that maybe my last movie?” No, no, no. I had to go to Lars von Trier and quickly make a movie. And that’ll be my swan song.

Swan Song is available on Amazon Prime

This interview has been condensed and edited for clarity

Alzheimers and Dimentia in the LGBTQ Community

Alzheimers & Dimentia in the LGBTQ Community

New research reported at the Alzheimer’s Association International Conference (AAIC) 2019 in Los Angeles found higher rates of subjective cognitive decline among lesbian, gay, bisexual and/or transgender (LGBT) Americans compared to their cisgender* heterosexual counterparts. In the study, subjective cognitive decline (SCD) was defined as self-reported confusion or memory problems that have been getting worse over the past year.

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers. The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

“As expanding research efforts continue to teach us more about the variability of Alzheimer’s and other dementias — for example by sex, race, genetics and exposure to environmental factors — the Alzheimer’s Association will fund, and encourage others to fund, more studies in LGBT and other diverse populations,” Carrillo added.

Increased Risk for Subjective Cognitive Decline Among Sexual and Gender Minorities
Few studies have investigated the symptoms and disease progression of Alzheimer’s and other dementias in the LGBT community. To examine these associations, Jason Flatt, PhD, MPH, assistant professor at the Institute for Health & Aging at the University of California, San Francisco, and colleagues analyzed data from the 2015 Behavioral Risk Factor Surveillance System (BRFSS), a large phone-based survey led by the Centers for Disease Control and Prevention.

The study analyzed data from 44,403 adults aged 45 and older across nine states in the U.S. (Georgia, Hawaii, Illinois, Minnesota, Nevada, Ohio, Virginia, West Virginia and Wisconsin) that participated in the 2015 BRFSS optional modules on the Healthy Brain Initiative, which included subjective cognitive decline and Sexual Orientation and Gender Identity. Roughly three percent of participants (1,253) identified as a sexual or gender minority (SGM). Subjective cognitive decline was defined as self-reported confusion or memory problems that have been getting worse over the past year.

The researchers found that more than 14% of SGM participants reported subjective cognitive decline, significantly higher (p<0.0001) than the 10% rate among cisgender heterosexual participants. Even after adjusting for factors such as income, age and race, SGM participants were 29% more likely to report subjective cognitive decline. More research is needed to understand why subjective cognitive decline may be higher in SGM individuals.

“Given that 1 in 7 adults who identified as a sexual or gender minority reported subjective cognitive decline, it is critical that more opportunities exist for people in these communities to receive regular evaluation for cognitive impairment and Alzheimer’s disease,” Flatt said. “There is also a need for greater education on Alzheimer’s risk, signs and symptoms, and training of health care providers to ensure inclusive and welcoming care for LGBTQ+ populations.”

“While we do not yet know for certain why sexual or gender minority individuals had higher subjective cognitive decline, we believe it may be due to higher rates of depression, inability to work, high stress, and a lack of regular access to healthcare,” Flatt added.

According to Flatt, less than half of SGM adults with SCD in the study talked to their health care provider about it. SGM adults with SCD were also more likely to report that they had to give up day-to-day activities (39% vs. 29%, p=0.003) and needed help with household tasks (44% vs. 35%, p=0.01) than cisgender heterosexual participants. Both groups were similar in terms of talking to their health care provider about their subjective cognitive decline.

First Study of an LGBT-Specific Alzheimer’s and Dementia Intervention
To advance research into Alzheimer’s in the LGBT community, Karen Fredriksen-Goldsen, PhD, professor and director of Healthy Generations Hartford Center of Excellence at the University of Washington, created the Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA) study. A multisite study in Seattle, San Francisco, and Los Angeles, Aging with Pride: IDEA is the first federally-funded study dementia intervention specifically designed for LGBT older adults with dementia and their caregivers.

The researchers had previously identified unique risk factors of LGBT older adults living with dementia through the first longitudinal study of this population (Aging with Pride: National Health, Aging, and Sexuality/Gender Study). Using longitudinal data with three time points (2014, 2015 and 2016), modifiable factors predicting physical functioning and quality of life (QOL) among LGBT older adults with dementia (n=646) were identified.

LGBT older adults living with dementia were significantly more likely to live alone (nearly 60%), not be partnered or married (65%), not have children (72%), and not have a caregiver (59%), when compared to older non-LGBT adults living with dementia. Previous experiences of discrimination and victimization (b=-0.19, p<.001) were negatively associated with QOL among LGBT older adults living with dementia. Socializing with friends or family (b=1.11, p<.05) was positively associated with QOL, and physical activity (b = 0.26, p<.001) were associated with better physical functioning.

As reported at AAIC 2019, Aging with Pride: IDEA includes a tailored approach in which trained coaches identify and modify challenging behaviors that are adversely affecting older adults living with dementia and their caregivers, either of whom are LGBT. The coaches delivered an individualized program of exercise, and behavioral and coping strategies designed to improve physical function, independence and QOL.

The exercise intervention is a low-impact physical exercise program including nine one-hour sessions over six weeks designed to improve physical functioning and maintain independence. The behavior and coping strategies include: techniques for working with LGBT-specific trauma, identity management and disclosure of their LGBT identities to providers and others, plus support engagement in the LGBT community and dementia services. Testing of the intervention is now underway and will be delivered to 225 pairs of LGBT older adults living with dementia and their caregivers.

“Given their lifetime experiences of victimization, discrimination and bias, many LGBT older adults forgo seeking needed medical care,” said Fredriksen Goldsen. “LGBT people living with dementia and their caregivers often have difficulty accessing information and support services, which can be especially challenging when memory loss and dementia enter the equation.”

HIV & Aging in San Francisco

HIV & Aging

Older adults living with HIV in San Francisco face staggeringly high rates of mental health issues and levels of loneliness, as well as experience a dire need for regular social connections and health care coordination, according to a landmark new report by the ACRIA Center on HIV and Aging at GMHC released Sunday.

The report, issued as the first part of the multi-site Research on Older Adults with HIV (ROAH) 2.0 project, demonstrates in stark terms that living with HIV as an older adult presents a unique set of challenges—and requires a complex set of coordinated solutions. More than 50% of all people living with HIV in the United States are age 50 and older, and by 2020, 65-70% of people living with HIV will be age 50 and older.

“While there is increased awareness that there is a critical need for both more services for, and more research about, older adults living with and affected by HIV, our nation is not fully prepared for the medical and social implications of the growth of this population,” said Stephen Karpiak, PhD, Senior Director for Research for the ACRIA Centers at GMHC and a Co-Principal Investigator of ROAH 2.0. “We hope that the fresh insights from this timely study—which come just as adults age 50 and over are becoming the majority of all people with HIV in the United States—will inspire action to address the many challenges older adults with HIV face.”

In San Francisco, where 65% of people living with HIV are age 50 or over and the cost of living is among the highest in the country, the need to know more about older adults with HIV is particularly pressing.  Though most participants reported that their HIV is well managed and that their health is “excellent” or “good,” 41% reported that their health is “fair,” “poor,” or “very poor.” They also reported a high burden of physical symptoms and diseases other than HIV.

Furthermore, survey participants said that they contend with hunger, low income, and burdensome housing costs. Many also said they lack ways to get help with the activities of daily living or care should they fall sick or be injured.

The findings of the report underline the importance of providing older adults with HIV with medical services guided by the principles of geriatric medicine (an approach tailored to the complex needs of older adults with multiple chronic conditions, e.g., multimorbidity and associated risks of polypharmacy), enhanced access to mental health treatment and social support, trauma-informed care that acknowledges the repercussions of a history of trauma and avoids re-traumatization, and programs to help ease the financial burden of living in a high-cost city on a low fixed income.

Other notable findings in the San Francisco ROAH 2.0 study include:

  • Rates of depression and PTSD were extremely high: 38% of participants scored as having moderate to severe depression and 35% scored as having post-traumatic stress disorder (PTSD) using conservative criteria. About half (51%) of the participants reported childhood sexual abuse.
  • Participants show a high prevalence of multimorbidity (having two or more chronic illnesses). They report a heavy burden of illness and physical symptoms: On average, they reported experiencing seven symptoms or diseases besides HIV in the past year. Data shows that the older adult with HIV is evidencing higher rates of illnesses typically associated with aging (cancers, cardiovascular disease, osteoporosis, kidney disease, liver disease, diabetes). Multimorbidity is associated with elevated risk for polypharmacy.
  • Three-quarters of participants said their needs for emotional support were not fully met, and just over one-fifth said they needed “a lot more social support.”
  • The most frequent need among participants (and the need that was most often unmet) was having opportunities to socialize or meet others.
  • Nearly 60% of the participants reported that their housing costs account for about half, or more than half, of their income.
  • A brief assessment showed that 19% of participants were food insecure (meaning they have uncertain or insufficient access to food) and 25% experienced both food insecurity and hunger.

The full study, a successor to a pivotal ACRIA study of 1,000 older adults with HIV in New York City in 2006, will ultimately include almost 3,000 older adults living with HIV in sites across the United States, including New York City, Upstate New York, Chicago, and Alameda County (the East Bay), as well as San Francisco. Results will help social researchers and care providers across the country develop more services geared specifically toward people living with HIV who are over the age of 50.

“GMHC is committed to being a national leader in the study of older adults living with HIV as we all start to fully grasp the enormity of the challenges faced by the 50-and-over population living with HIV,” said GMHC CEO Kelsey Louie. “We hope that service organizations across the country will start to use these findings as they develop services and interventions designed to help this population. Since entering into a strategic partnership with ACRIA in 2017, GMHC has redoubled its efforts to work collaboratively with our older adult communities, launching the Terry Brenneis Hub for Long-Term Survivors earlier this year, relaunching GMHC’s pivotal Buddy Program, and using new data to better tailor our services. We look forward to shepherding more vital research that will help us provide the best possible holistic care for our older clients.

Ruthie and Connie LGBT Elder Americans Act

Ruthie and Connie LGBT Elder Americans Act

United States Representative Suzanne Bonamici, along with her House colleagues Ted Deutch and Charlie Crist, have re-introduced the Ruthie and Connie LGBT Elder Americans Act, a critical LGBT aging bill named after lesbian activists Ruthie Berman and her late wife Connie Kurtz.

The bill, endorsed by SAGE, would be a significant step forward in protecting LGBT elders, who face higher rates of poverty, pronounced social isolation, and less access to health care. If passed, it would ensure that LGBT elders and older people living with HIV have improved access to aging services and supports under the Older Americans Act, the country’s largest vehicle for funding and delivering services to older people in the U.S. This legislation follows yesterday’s re-introduction of the Equality Act, a federal LGBT civil rights bill that would protect the LGBT and gender nonconforming community against discrimination.

“Congress is ready to take action to protect LGBT rights. The 50th anniversary of Stonewall is coming up this year. It’s been 50 years, and we’re making progress,” said U.S. Representative Suzanne Bonamici speaking during SAGE’s National Day of Advocacy on March 13. “When I met with SAGE, I met an older gentleman who said that in order to get in-home care, he felt like he had to take down all of his pictures and hide who he was. That is wrong. That’s why we need to pass this bill.”

Ruthie Berman, 84, is a former New Yorker who now resides in Florida. She and her wife, Connie Kurtz, who passed away in 2018, successfully sued the New York Board of Education for domestic partner benefits in 1994. The couple went on to win many more achievements as LGBT activists.

“While we’ve made progress in our fight for LGBT equality, we still have work to do,” said 84-year-old Ruthie Berman, a lesbian activist and namesake of the bill. “My beloved Connie Kurtz passed away on May 27, 2018. I know Connie’s spirit is here, and that she would be proud to see the incredible advances that the LGBT community is achieving. LGBT people, especially older people, across the country still face challenges in accessing aging services and supports. That’s why this legislation is so important, and why it must be passed.”

“We are thrilled to see the introduction of the Ruthie Connie LGBT Elder Americans Act – the day after SAGE’s first ever National Day of Advocacy. Ruthie Berman, the bill’s namesake, met Congresswoman Bonamici and passionately made the case for protections. It’s been 50 years since Stonewall. It’s been five decades since that uprising. It’s high time that our LGBT trailblazers are protected and can access services,” said SAGE CEO Michael Adams. “We commend the leadership of Congresswoman Bonamici and thank each Member of Congress—including Representatives Ted Deutch, Charlie Crist, and David Cicilline, as well as Senator Jeff Merkley—who are taking a stand to better protect millions of older LGBT people across the country.”

Join the Age-Friendly Pride Movement

LGBTQ Pride and Older Adults

SAGE has created this checklist of age-friendly practices for Pride celebrations.   The framework is based on the World Health Organization’s domains of Age-Friendly Communities.  However, age is just one part of a larger commitment to embracing the diversity of our community.

Outdoor Spaces and Structures

There is a broad range of characteristics of the urban landscape and the built environment that contribute to age-friendliness.

  • Events are held in venues that can accommodate individuals with limited mobility
  • Activities and services for LGBT older people are clustered together to minimize travel distance
  • Pathways are well-maintained, level, non-slip, with low curbs that taper, and wide enough to accommodate wheelchairs
  • Reserve seating is provided
  • A shaded cooling center and hydration station is provided
  • Convenient restroom access is a priority

Communication and Information

Regardless of the variety of communication choices and the volume of information available, the central concern is to have relevant information readily accessible to older people with varying capacities and resources.

  • Information about the Pride events are disseminated to LGBT older adult audiences where they can conduct their usual activities such as wear they live, senior centers, and faith communities – not just LGBT settings
  • Age-friendly printed materials describing Pride activities are provided (large type, clear headings)
  • Outreach specifically to older LGBT individuals is conducted through the postal service, email, and social media
  • When communicating with LGBT older adults, information about the event, its accessibility and transportation options is included

Civic Participation

An Age-Friendly Community provides options for older people to contribute and to be engaged.

  • Pride advisory councils, planning committees, boards and staff include LGBT older adults with representation from transgender communities and communities of color
  • Begin or maintain collaborations with Racial Justice organizations – building relationships and working together on issues important to LGBT elders of color.
  • The skills and interests of LGBT older adult volunteers are matched to positions that take advantage of their skills, and appeal to their interests
  • Volunteers are supported in their work, for example, being offered rides to and from meetings or having the cost of transportation from meetings or having the cost of transportation reimbursed for low-income elders

Social Participation

The capacity to participate in formal and informal social life depends not only on the offer of activities, but also on having adequate access to transportation and facilities.

  • Support exists to enable LGBT older adults to participate, such as reserved seating, aids for the hard of hearing, and transportation
  • LGBT older adults have the option to participate with a friend or caregiver
  • Elder-oriented activities are offered and the times are convenient for LGBT older people
  • Committees are charged with finding ways to encourage more LGBT elder participation
  • Partnerships with elder-serving organizations are formed to encourage more participation through cross-postings, co-hosting, and developmental activities

Transportation

Being able to move freely determines social and civic participation

  • When a parade terminates at an inaccessible location, alternate arrangements for older adult contingents are made such as allowing them to exit the parade before the end of the route or providing shuttles back to the parade route, parking lots, or public transportation
  • Access to reserved parking is provided
  • The walking route from parking lot to venue is free of trip hazards
  • Shuttles to and from parking lots are provided
  • Assistance for individuals with sight or mobility issues is provided
  • Shuttles to and from senior buildings and residential communities are provided

Respect and Social Inclusion

The extend to which older people participate is closely linked to their experience of inclusion.

  • LGBT older adult contingents are placed at the start of the Parade (both to honor their contributions and to assure that LGBT older adults don’t have to queue for a long time)
  • Older adult inclusion strategies and outreach tactics are specifically inclusive of transgender older adults and older adults of color
  • The lives, challenges overcome, and historical accomplishments of the older LGBT community are acknowledged and celebrated
  • There is an application of resources to – and visible action on – issues that resonate most with African American, Latinx, Asian Pacific Islander, and Native American LGBT older adults
  • LGBT older adults are consulted on ways to better include them in Pride events
  • Partnerships and collaborations with organizations that serve transgender elders and elders of color are established
  • For those older adults wishing to be in the parade, alternatives to walking and riding on floats – such as golf carts, buses, and trolleys – are provided
  • LGBT older adults wishing to be in the parade

Make a commitment to have an inclusive Pride celebration this year.  To sign the SAGE pledge online, visit sageusa.org/welcometopride

 

 

 

 

 

 

Age-Friendly Pride Initiative

Age Friendly Pride Initiative

CenterLink (The National Association of LGBT Community Centers) is partnering with The Center for Black Equity, InterPride, and SAGE on an age-friendly* Pride initiative.

The goal of this initiative is to encourage the inclusion of older LGBT individuals in all aspects of Pride parades, marches, and festivals and we need your help! Below is a link to two surveys that we are hoping you will push out. One is for participants, and one is for people who have a Pride planner, sponsor, or organizer role.

The results of these surveys will inform the creation of an Age-Friendly Pride Toolkit (a set of tools, such as guidelines, resources, and checklists) that we hope will increase the age-friendliness of Pride parades, marches, and festivals nationwide. The audience for the toolkit are organizers, sponsors, and providers responsible for planning and implementing Pride-related activities.

We would be grateful if you took a few minutes to complete a brief survey. The results will inform the creation of an Age-Friendly Pride Toolkit, which we hope will be used to increase the age-friendliness of Prides across the country. Thank you in advance for taking the time to give us your feedback!

Pride Participant Survey

Pride Planner, Sponsor, and Organizer Survey

The Issues Facing LGBT Older Adults

Issues Facing LGBTQ Older Adults

It is estimated that there are approximately 2.7 million LGBT adults aged 50 and older in the United States, 1.1 million of whom are 65 and older. Understanding Issues Facing LGBT Older Adults provides an overview of their unique needs and experiences so that service providers, advocates, the aging network, and policymakers can consider these factors when serving this population or passing laws that impact older adults and the LGBT community.

This report was written by SAGE USA and the Movement Advancement Project.  Download the complete report below: 

Understanding Issues Facing LGBT Older Adults

Understanding Issues Facing LGBT Older Adults
Understanding Issues Facing LGBT Older Adults