Aging is different for LGBT seniors
By Frank M. Samson
By lucky chance, I interviewed a director of SAGE, the nation’s largest advocacy organization for LGBT elders, moments after the Supreme Court announced its decision on same-sex marriage. Following is an edited transcript of my conversation with Catherine Thurston, senior director for services and training at SAGE, on the Aging Boomers podcast.
Frank: Welcome to the Aging Boomers, I'm your host Frank Samson. Of course on our show we discuss so many of the issues facing boomers, their parents, and an aging population.
I'm very excited about today's guest for a number of reasons. This is pretty timely that we are having this interview today. We have with us Catherine Thurston, senior director for services and training at SAGE, Services and Advocacy for Gay, lesbian, bisexual and transgender Elders. Since joining SAGE, Catherine has overseen the launches of both the nation's first federally funded national resource center on LGBT aging and the nation's first senior center devoted to LGBT older adults. Catherine has worked in the field of aging and mental health for 24 years. Prior to joining SAGE in 2005, she was the director of Alzheimer's programs at Cobble Hill Health Center in Brooklyn, New York. Catherine, it's an honor to have you on the Aging Boomers, thanks for joining us.
Catherine: Thanks for having me, Frank.
Frank: A lot of interesting news that just happened. LGBT advocates have made tremendous progress toward marriage equality in recent years, but just before we began this interview, the Supreme Court ruled that states cannot ban same-sex marriage. Tell us about that and why you think marriage equality is so important to older people.
Catherine: Thank you, Frank. Today is absolutely an historic day for Americans and certainly for LGBT people. The Supreme Court recognizing the constitutionality of same-sex marriage is something I don't think many LGBT boomers or LGBT elders would ever think that they would see in their lifetime.
There are many reasons why it's such a fantastic thing for all people. Dignity, recognition, love, equality.
For LGBT boomers and older people, there are federal protections that they have not been able to avail themselves of. Things like survivor benefit s under Social Security, certain Medicare and Medicaid opportunities that were not given to people because of the federal recognition component, even if they were married in a state in which marriage was recognized. There are a lot of reasons why it's incredibly important for older adults, but I think today is really about celebrating equality.
Frank: I want to get through this interview because I know you have a lot of celebrating to do. Though I'd like to believe everybody understands what LGBT stands for, I don't think that's the case. Tell us about this acronym and more about the history of SAGE.
Catherine: The acronym LGBT stands for lesbian, gay, bisexual, and transgender. All of the different communities under the LGBT umbrella make up the population which SAGE serves. We have been around since 1978; SAGE was formed by a group of LGBT advocates and social workers who were interested in aging. They recognized that they were all younger people in their 30s and 40s and they were not seeing older people represented in any of the LGBT materials or in any of the places where they congregated and socialized. They got old, but where were they and who was there to help to take care of them and to understand the challenges of what it means to be LGBT and to be older.
Since 1978, SAGE has grown enormously. I have been here for 10 years and even in the 10 years I've been here, SAGE has really become both a locally (New York City) based and a national policy and advocacy organization. We provide direct services to LGBT older people and also work on policy and advocacy issues that impact LGBT older people. We currently have 27 affiliates in 20 states around the United States.
Frank: Is aging really different for LGBT people than others?
Catherine: There are challenges around getting old that apply to everybody. But there are some basic differences that separate LGBT older adults from their mainstream cohort.
Two big numbers I like to impress upon people are that LGBT older adults are twice as likely to be living alone, without a partner, than heterosexual older adults. Even more importantly, for LGBT older adults today, they are four times less likely to have adult children.
All of us who work in elder care know that adult children are the number one source of family caregiving support; LGBT older people are really bereft of an automatic caregiving support network. People will often say to me, 'Well I know a lot of gay people and they're getting married and they have children," and that is true, and that is wonderful. As of today that will be even truer. But we are talking about people who are 50 to 100, and lived a very different life experience, and did not have the role models and did not have the opportunities afforded to LGBT younger people. As a result, they're often living very isolated and often estranged from their families.
Frank: LGBT people still have strokes, they have dementia and various forms of dementia, and still need the same care. They have the same challenges from that standpoint.
Catherine: That's exactly right. What we know is that LGBT older people are far less likely to report to their primary health care providers about their sexual orientation and their gender identity. We have people at the same risk, in some cases because of some certain health care disparities in our community, at greater risk for medical issues, but they're less likely to be out and sharing vital information with their health care providers.
Frank: I'm going to ask this question because it's just near and dear to my heart because I work in the business and work with families and individuals to help them find assisted living, memory care, et cetera. If they (gays) are not in a specific LGBT community, and it's an assisted living community with a mix of people, my concern is about the other residents treating gays differently than they should be treated. Tell us about that and how we are dealing with that.
Catherine: That's a fantastic question. SAGE is the lead organization behind the National Resource Center on LGBT Aging, which is a federally funded technical assistance and resource center for LGBT older adults. The primary mandate of that resource center is to train not just providers but to train everyone in the aging network, whether it be other residents, the nursing assistants who do the hands-on care, or the executive staff of a long-term care facility, to train them around the needs and the challenges of LGBT older people.
No matter how much equality we see in our lifetimes, we will not have LGBT-only facilities all around the country, and I would argue that some LGBT people don't want to live in an LGBT-only environment. Many people we see at SAGE want to retire or want to live in facilities that are an open and affirming mix of people. In order to do that, we have to be sure, and really my goal at SAGE is to try and ensure, that there is no wrong door for an LGBT older person, wherever they live in the country and whatever kind of service they need. That means an enormous amount of training needs to happen.
Frank: Maybe I'm delving too far into this, but I deal a lot with people with various forms of dementia, and as you know it's the short-term memory that goes first. Somebody who may have had a bias against those in the LGBT community at a younger age, but as they got older realized, "I was wrong, I'm changing." Sometimes that bias comes back with dementia. What are your thoughts there?
Catherine: That's actually a really interesting point. I remember when I was responsible for the Alzheimer's programs prior to coming to SAGE at Cobble Hill Health Center. I actually did have a scenario in which an older woman with Alzheimer's disease who had been cared for by her son who was a gay man and his partner, whom she loved dearly, and referred to as her son's husband. As she became more and more advanced in her dementia, she stopped being so pleasant and warm to the partner and started saying some pretty inflammatory things. While they recognized it was a part of the illness, it was also very painful.
Part of our work was to help them understand the disease process, but it's a very good point, and I think I should say it's not our goal at SAGE, nor could it ever be, to change the hearts and minds of everybody in the United States. That's not possible.
Our goal is to make sure that there are safe and affirming places, and affirming staff that can help people feel welcomed. We can also work with people if they are not in the right place or they're not working with the right group of staff, to change that. Either to change their facility, to change their location, to change even if it's just a matter of changing the nursing assistant who's assigned because that person has deep religious and moral reasons why they can't take care of an LGBT person. We see those scenarios every day at SAGE.
Frank: We have a lot of different people that listen to the show, and we have a lot within the health care industry, and those that are caregivers, family caregivers, professional caregivers, executive directors of assisted living facilities maybe don't have a program yet to help educate their own staff. How would they go about finding the best program?
Catherine: The best way is to go on the National Resource Center's website, which is a very easy site to remember, it's www.lgbtagingcenter.org. There are two things they could do on that website. There is a map of the United States that they could scroll on and they could see which agencies have already been trained in their state or locality, but there's also an opportunity to apply to have training at your organization.
There is a training request form right on the website. Our staff travels all over the country, providing trainings to whether it be an assisted living, whether it be a chain of residential facilities, whether it's senior centers. We have a national core of trainers located all over the country who can come out and provide a variety of different trainings. Some of them are as short as an hour and some of them are as long as eight hours, in order to make sure that your staff and your facility feels like it understands the issues.
I want to commend you Frank, for starting out by asking me what does the L and G and B and T stand for. We do not expect that people have an advanced understanding of LGBT aging. I was working in aging for decades before I came to SAGE, and I had never even really thought about this issue. This training can be as absolutely basic as just starting out saying the words out loud and thinking about them.
Frank: Right. I commend you for everything that you're doing and the entire organization is doing. From a funding standpoint, if people that are listening, saying, "I'd like to try to help this organization," how do they go about learning more about if they want to provide donations, funding, how does that work?
Catherine: SAGE has a really terrific website, www.sageusa.org, and there is an opportunity to look at all of our different national programs, and for those people in New York City there’s a link to our local programs, and there is a button to donate if what you're reading about gets you excited.
Frank: I welcome people to do that. Most baby boomers are starting to approach retirement or at least thinking about it. Are the financial and social concerns of retirement different for LGBT, that community?
Catherine: They are, and actually SAGE and the Harris Poll did a really fantastic national study called Out and Visible, which is about the experiences and attitudes of LGBT boomers and older adults. They looked at people 45 to 75 and one of the most interesting things about that study is that we compared a sample of LGBT boomers with their non-LGBT counterparts, and we asked a lot of questions about retirement, finances, andhealth care planning.
What we learned is that LGBT people are far more concerned than non-LGBT people about financial security and about retirement. Far more LGBT older people than non-LGBT express a lot of unease about having saved enough money to retire. We do know that LGBT people feel more worried about how much they have saved, about their ability to retire, and about whether they've done the right amount of planning for retirement.
Frank: Don't all people have that worry? Why do you think LGBT people are more concerned about that?
Catherine: Think about the people who are 60, 70, 80, 90. For a variety of reasons, as [these LGBTs] were going through life in a time and in a society that was not accepting and was often very discriminatory, many of them have very spotty work histories. There tends to be this cultural myth in our society that LGBT people and gay people especially are wealthier. But what we know at SAGE is that the majority of the older people we work with are living at the Medicaid eligibility threshold. One of the reasons why they're more worried is because simply they have less money. They have fewer resources. They're often living in single-person households, and much more so than their heterosexual counterparts, which again leads to a higher rate of poverty.
For many LGBT people, and again this is especially true of gay men, the HIV and AIDS crisis in the 80s really disrupted their income patterns and disrupted the way that they were thinking about saving. We have a cohort of people we work with at SAGE who really did not think they were going to live into old age, and they made financial decisions they probably would not have made knowing that they're still alive at 70, 80, and beyond. All of that really impacts why LGBT people feel a little bit more vulnerable about retirement.
Frank: It certainly makes a lot of sense. It was an interesting point you brought up earlier that even we're going to see more and more [LGBTs] getting married and probably having children, there still are so many without children. When I am dealing with a family member looking for assisted living or memory care, I'm usually dealing with the adult children. What do you think's going to happen there?
Catherine: Another terrific question. What we have done at Sage is we’ve created a caregiving program called Sage Cap, which stands for Caring and Preparing. There's two parts to this program. One is we help to take care of the older adult themselves, and we help establish a support network for them made up of the people in their lives that are willing to step up. As you say, you often deal with adult children.
What we do is we help older adults locate or identify those people that might be a replacement. It could be an ex-partner. It could be a neighbor. It could be a friend. It could be a niece or a nephew. What we also do, we have established what we call ‘friendly visitor’ programs, which match a younger volunteer with an older LGBT adult who's especially isolated. That program, the friendly visitors really become caregivers.
The preparing piece is really to help LGBT boomers. In order to be in our caregiving program, somebody has to be LGBT and over 60. We work with the boomer to think about how their retirement and their aging future doesn't look the same as their heterosexual brother. How can we get your legal and financial house in order so that you can age with all the benefits that you need in place? It's really a bifurcated program, but at the end of the day, Frank, we have people who are just absolutely profoundly alone. Their social worker or case manager at Sage really functions almost as a de facto caregiver.
Frank: Right. We talk about power of attorney all the time on this show and how important it is for people to have a power of attorney. It doesn't matter if you are in need of care or not, I think when you turn 18 you should probably have a power of attorney. I would think it's just so important for those that don't have children to set up a power of attorney. Is that something that Sage highly recommends?
Catherine: It is. We have as one of our services a legal clinic that works especially to highly recommend the importance of not just a power of attorney, but also a health care agent in order for LGBT older adults.
Being able to appoint someone your health care agent and your power of attorney and being able to advocate very strongly with a health care system that this is the person you talk to, is something we walk all of our Sage folks through so that they're not in a situation where the person that is really their caregiver is not being spoken to.
Frank: Yeah. I could talk to you all day but I know you want to go celebrate and we only have about another minute or two so why don't you just let our listeners know how again they can either get in touch with you or a representative at Sage to learn more.
Catherine: Absolutely. The easiest way to get in touch with any of us at Sage is to go on to our website, www.sageusa.org, and that will link you to our national resource center site and it will also link you directly to me. If you look at staff, you'll find my email address and I'm more than happy to speak to people or answer email questions about how we can help.
Frank: Great. Catherine, thank you so much for joining us and congratulations – that’s wonderful news for everybody. Thanks so much for everything you do. We would love to have you back in the future, there's going to be so much more to talk about on the subject matter.
Catherine: I would love that, Frank. Thank you so much.