You are currently viewing Living and Aging Well with HIV: The Need for Better Mental Health Care with Mark Brennan-Ing

Living and Aging Well with HIV: The Need for Better Mental Health Care with Mark Brennan-Ing

Episode #54April 6, 2021

More than half of the people in the US living with HIV are 50 years old and older. With the use of antiretroviral medications, people who were diagnosed with HIV decades ago have been able to live well into older adulthood. This is great news.

Sadly, stigma due to age, sexual orientation, gender identity, and HIV status contributes to poor mental health and physical health.

In this interview, Dr. Mark Brennan-Ing, Director of Research and Evaluation at the Brookdale Center for Healthy Aging at Hunter College, the City University of New York is on the Psychology of Aging podcast sharing important information about:

  • HIV among people aged 50 and over
  • The social, cultural, and medical reasons that adults 55 and older live with HIV longer before getting a diagnosis
  • Reasons why people living with HIV might be experience depression at 5 times that of the general population
  • What we can do to help meet the medical and mental health needs of aging adults with HIV

Here’s a peek inside the interview:

  • [05:15] HIV among people aged 50 and over is on the rise in the US and the world. Learn more about the aging of the HIV epidemic.
  • [07:41] How is antiretroviral therapy helping people to live longer?
  • [14:08] What is Pre-exposure prophylaxis (or PrEP)? Does it really work?
  • [20:48] What are the social, cultural, and medical reasons that adults 55 and older live with HIV longer before getting a diagnosis?
  • [26:46] What is “inflammaging” and how does it intersect with HIV?
  • [30:17] How does stigma affect people living with HIV?
  • [32:53] People living with HIV experience depression at 5 times that of the general population. Learn some of the reasons why.
  • [43:37] What can we do to help meet the medical and mental health needs of aging adults with HIV?
  • [47:02] People living with HIV have incredible reserves of resilience and survivorship. Learn more about how to resilience to promote mental wellness in people living with HIV?

Watch a video clip of our interview, here:

AboutMark Brennan-Ing, PhD

Mark Brennan-Ing, PhD, is a Director of Research and Evaluation at the Brookdale Center for Healthy Aging at Hunter College, the City University of New York. Dr. Brennan-Ing’s research focuses on psychosocial issues affecting persons living with HIV and older sexual minority and gender diverse adults. They are Past-President of the State Society on Aging of New York (SSANY), a Fellow of the Gerontological Society of America (GSA), a Fellow of Division 44 (Psychology of Sexual Orientation and Gender Diversity) of the American Psychological Association, and past Board Member of the New York Association on HIV over Fifty (NYAHOF). They were the Principal Convener for GSA’s HIV/AIDS and Aging interest group, a member of the American Society on Aging’s LGBT Aging Information Network Leadership Council, and 2016 Chair of the American Psychological Association’s Committee on Sexual Orientation and Gender Diversity. They were an invited member of the NIH Office of AIDS Research Working Group on HIV and Aging in 2011. Dr. Brennan-Ing has been recognized for their work by the Hunter-Brookdale Center on Aging, Pride Senior Network, and the New York State Office for the Aging. In 2017 they received the Walter M. Beattie Award from SSANY. Dr. Brennan-Ing was the lead editor of Older Adults with HIV: An In-depth Examination of an Emerging Population (2009), and the 2016 volume, HIV and Aging: Interdisciplinary Topics in Gerontology and Geriatrics (vol. 42), which received a “High Commendation” from the British Medical Association. They have authored over 100 peer-reviewed articles, chapters and books.

Important Note:

People aged 50 and older need to know their HIV status so they can take medicine to treat HIV if they have the virus. Taking HIV medicine every day can make the viral load undetectable. People who get and keep an undetectable viral load (or stay virally suppressed) can live a long and healthy life. They also have effectively no risk of transmitting HIV to HIV-negative sex partners. – Centers for Disease Control & Prevention

Learn more about memory loss

If you’re concerned about someone you love possibly having a significant memory loss or a dementia disorder, please download my free memory loss guide. It answers some of the most frequently asked questions I get about memory loss.

Mentioned in this episode:

Resources for LGTBQ Older Adults

  • SAGEConnect links LGBT elders with their broader community, reducing isolation and promoting well-being- connect online here. If you know someone who would benefit from SAGEConnect, but doesn’t have internet, call the registration line at 929-484-4160.
  • Check out SAGE’s LGBTQ Aging Guides and Resources
  • Considering Long-Term Care? Check out these resources for LGTBQ seniors
  • Facing discrimination in your senior community? Lambda Legal defends the rights of LGBT and HIV-positive seniors who face discrimination related to their sexual orientation, gender identity or HIV status, including discrimination by staff and residents at senior centers, senior housing, long-term care and beyond.

Dr. Mark Brennan-Ing 0:00
People with HIV are just like anyone else. The only difference is they were infected with this virus, and maybe we're not. But, um, I think if we could get to that point of saying, if we could start looking at HIV, like we look at other diseases that we don't stigmatize, if we could just look at this, like, this is just one small piece of the puzzle, I think that would be really helpful because I think one of the things older people with HIV really want to do is give back their you know, I think as we get older, we all have this kind of natural tendency or to towards generativity or, you know, giving back to society in some way. And a lot of these folks really want to give back, they want to share the knowledge and the experience that they've gained. They want to provide support to people or newly diagnosed or to younger people. Because, you know, there's a lot of issues when you're younger, and you have an HIV diagnosis in terms of your relationships, and, and everything else and, and trying to share that wisdom. So I would really hope we could get to the point where we could accept people with HIV in a non stigmatizing way. And give them those opportunities to contribute to society, because I think we'll all be better off for it.

Dr. Regina Koepp 1:26
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and family. I created the Psychology of Aging podcast to answer some of the most common questions I get about aging, the questions about mental health and wellness changes in the brain like with dementia, relationships, and sex, caregiving, and even end of life. Like I say in my therapy groups, no topic is off topic. We just have to have a healthy way of talking about it. So if you're an older adult, or caring for one, you're in the right place. Let's get started.

Dr. Regina Koepp 2:15
Welcome to the 54th episode of the psychology of aging podcast. In today's episode, I interview Mark Brennan he who is on the podcast today to talk about living and aging well with HIV. Here's why this topic is so important. More than half of the adults living in the United States with HIV are 50 years old and older. With the use of antiretroviral medications, people who were diagnosed with HIV decades ago, have been able to live well into older adulthood. That is great news.

About Mark Brennan-Ing, PhD

Dr. Regina Koepp 2:56
And so today, Dr. Mark Brennan Ing is on the podcast, giving us expert insight and information about supporting older adults living with HIV, and tips for helping folks live in age well with HIV. Dr. Mark Brennan Ing. He is director of research and evaluation at the Brookdale center for healthy aging at Hunter College, the City University of New York, Dr. Brennan, His research focuses on psychosocial issues affecting persons living with HIV and older sexual minority and gender diverse adults. They are past president of the state society on aging of New York, a fellow of the gerontological Society of America, a fellow of division 44, which is psychology of sexual orientation and gender diversity of the American Psychological Association, and past board member of the New York Association on HIV over 50. I am delighted to interview Dr. Brennan Ing today on living and aging well with HIV. Mark Brennan Ing. Thank you so much for joining me today on the psychology of aging podcast. I'm delighted that you're here and to share all of your decades of knowledge and research with us. But will you share a little bit about who you are and what you do?

Dr. Mark Brennan-Ing 4:20
Sure, I'm a gerontologist. I've been working in HIV and aging since 2007. Before that, I studied how middle aged older adults cope and adapt to visual impairment. And I did that work for about 11 years. So So mostly my career has focused on I would say broadly how people cope and tap to chronic health conditions in middle and late adulthood. within that framework, I've looked at a variety of issues from mental health to sexual health to social relationships and social supports, and also things like resilience. Specifically how religion spirituality can be beneficial in terms of helping people cope with chronic illness?

HIV and aging in the US & the World

Dr. Regina Koepp 5:15
Can you share a little bit about HIV and aging in the US?

Dr. Mark Brennan-Ing 5:21
Sure, it's, it's really an emerging phenomenon. So when I started working in HIV, in 2007, and when I was offered this position to do research on older adults with HIV, I was like, you know, really a thing. But then I started to get into the data and see where the epidemiological trends were going. And pretty close to predictions. Right now, half the people in the US with HIV are over the age of 50. in certain areas, that proportion is even greater, like San Francisco in New York. In addition to that, nearly one in five new infections are among our among people over the age of 50. And there's been some estimates that adults over the age of 45, are responsible for half of the HIV infections overall. So there's this idea that HIV is a young person's disease. And there's a lot of that is driven by ageism in our culture, and ageism in the HIV field in general. But in most upper middle income countries, or countries like Brazil, where the antiretroviral therapies have been widely available, we're seeing this ageing of the population. And even if you go too low, and middle income countries like those in Sub Saharan Africa, there's a growing proportion of older adults with HIV right now, if you look in Sub Saharan Africa, it's a little over 10% of the population. But that translates into over 3 million people, which is about three times the size of the entire epidemic in the United States. So this is a worldwide issue, as anti retrovirals become more affordable, more available, this is just going to continue for the foreseeable future. And so really what we're seeing short of a cure for HIV, I think the next challenge for those of us working in the epidemic is how do you provide care and support for an aging population, who's dealing with HIV, in addition to all the other challenges we face when we grow older?

How is antiretroviral therapy helping people to live longer?

Dr. Regina Koepp 7:41
Now, you mentioned this myth that we have that HIV is a young person's illness, one of the statistics you shared, we know that it's not. And also, you talked about antiretroviral medications. And and I know that when we were preparing for this interview, you've shared a lot with me about what it was like to be diagnosed with HIV in the 80s and 90s. Versus now and then the experience of having access to anti retrovirals, early on, or when they became available in the 90s. And, and sort of having to two different experiences of living with HIV. There's the experience of living with it for decades, and then being newly diagnosed and you kind of touched on those. Can you talk a little bit about that experience?

Dr. Mark Brennan-Ing 8:29
Sure. So you know, one of the reasons we're seeing this growth in the older adult population is because of the antiretroviral therapy. Now, we have a lot of long term survivors, which we didn't see early on in the epidemic. So, you know, in the 80s, once they figured out what this disease was, if you got an HIV positive diagnosis, you had a life expectancy of about two years on average, there were just no treatments. There are a lot of experimental treatments going on nutritional therapies, a good snapshot into that world, although it is fiction is a story called The Dallas Buyers Club. And really the length that people with HIV were going to because there was really nothing else out there. They were looking for any kind of a lifeline. I can tell you, personally, I tested in 1986. Unfortunately, that test came back negative. But that was about the worst to your weeks of my life, because you were just waiting and waiting and waiting. And if you got a positive test result, there was nothing you could do. There was no treatment you could go into it was really, you have this amount of time to get your affairs in order. So for people who were diagnosed before the antiretroviral therapies came available in the mid 1990s. It was really a really a bleak situation. No one expected To live two years, much less live into, you know, middle age and older adulthood. And the antiretroviral therapy really became a game changer for people. In some cases, this was described as the Lazarus effect, the literally people who were on death's door, once they started getting the therapy came back. I mean, I had friends who were in that situation, why didn't think we're gonna live longer than, you know, a couple of years who are still alive today, not that they don't have some challenges because of the HIV. So so we have this whole group of long term survivors, you know, a lot of people who are diagnosed in their 80s, primarily gay and bisexual men, and a lot of gay and bisexual men of color. But then, as HIV kind of leaked out of the gay community, increasing numbers of heterosexuals were infected at that time, too. So, you know, for long term survivors, there's a much research shows is very different attitudes towards that antiretroviral therapy is being a real lifesaver for them. For people who've been diagnosed after that was developed, it's kind of a different relationship, and that the having to take this medication every day, in its current form is really a daily reminder of HIV disease. And there's still a lot of stigma around HIV, even though we it's curable now, or not curable, it's treatable. Now. We're still short of a cure. But people who are adherent to their antiretroviral medications, excuse me are able to suppress their viral load to a level where it's undetectable. And in those cases, not only is this good for their health, but their chance of passing the virus on through sexual activity is virtually non existent. So this finding this idea that undetectable equals on transmittable has been another game changer for the HIV community, because that's one of the big stigmatizing factors of HIV is that it is an infectious disease, and other people can catch it. And there's still a lot of myths around how HIV is transmitted. Especially when you get into more traditional communities and communities that don't have the same kind of access to education. So there's still this idea that HIV can be transmitted through casual contact. When it can't, it's not. I think, you know, one of the challenges with the Coronavirus is you just have to be standing with somebody and you can get it. That's not HIV, HIV requires some kind of intimate contact, some kind of sharing of body fluids or some kind of contaminated instrument like a, an injection needle. So, so that's that's made a huge difference in people's lives.

Dr. Mark Brennan-Ing 13:11
And this idea is also really important for older people with HIV, because the main tool for preventing the spread spread of HIV through sex had been using condoms or other kinds of adjustments to your sexual behavior, so that you didn't risk passing the virus on. One trouble a lot of older men have is using condoms because a lot of older men have erectile dysfunction. A lot of people have trouble using condoms, just in general, the reptile dysfunction exacerbates that. So this is another way along with pre exposure prophylaxis, which is something an HIV negative person can take to avoid becoming HIV infected. There are a lot of options now for people to have safer sex that don't always involve condoms. And and this is a good thing for older men and their partners.

What is Pre-exposure prophylaxis (or PrEP)?

Dr. Regina Koepp 14:08
Yes. Now you just mentioned prep. Can you speak a little bit more about prep to tell us what it is and if there are side effects? How does it work?

Dr. Mark Brennan-Ing 14:19
Okay, so we'll start off by telling you about the anti retroviral therapy, the HIV drug is that cocktail is usually composed of three components, sometimes just two of these components. Without getting into all the technicals. One of those medications prevents the HIV from getting into the cell. There's another medication that prevents the HIV from replicating in the cell, and then a third medication that prevents the HIV from killing the cell and getting outside and infecting other cells. So this, these three steps have been, you know, key to controlling HIV. The pre exposure prophylaxis only uses one of those drugs. But they find that in people who aren't infected, yet, that's enough to prevent HIV infection. So that's what pre exposure prophylaxis is. There are some side effects depending on the formulation of that drug, they tend not to be major side effects, there can be some impairment of kidney function. But one of the key things about being on PrEP is that it requires you to be engaged in care with your physician. So you can pick this up over the counter. And there's the whole protocol for being on prep, that requires you to get an HIV test. Because if you are HIV positive and go on prep, you can actually cause that virus to mutate because you're not blocking it at every step in its lifecycle. It also people get tested for other sexually transmitted infections, other rest API's. So this engagement and caring this prep really leads to better sexual health among people who are on prep, there is this idea that, oh, you know, PrEP is available now people are gonna throw the continents away and have all kinds of wanton unresponsible sex and you know, spread STI is all over. There has been some studies have shown a slight increase in STI is in some groups, primarily gay and bisexual men who were using prep. But But this isn't widespread, the bigger problem with PrEP is getting people to take it. So there's been a lot of prep uptake in white, more middle class gay and bisexual male communities, there has been much less uptake in communities of color. This relates we're hearing a lot of talk now about resistance to the COVID vaccine as it comes out, it's a lot of the same reasons, a lot of the same distrust of the medical establishment and, and taking medications that people don't really understand how they work. There's also a lack of uptake in the transgender community and transgender women of color are really heavily affected by HIV. So within the community, within providers have been working on more innovative ways of, of trying to do outreach round prep to these communities to increase the uptake, because it really does work. And it really is effective. An example of that it was a organism organization, I think it was in the Bay Area that serve primarily transgender women. And they came up with a program where when the women would come in for gender affirming hormone treatment and other kinds of therapies, they would couple that with the prep, so they weren't just coming for the prep, it became part of this package of medical care, that they were getting to address their their gender transitions and, and gender affirming treatments, which made the whole package more appealing. So we need to do a lot more work around that. And then of course, you know, another barrier is is people being embarrassed to talk about their sex lives and having their sexual health addressed with a physician. And so it's it's it requires some outreach and education to get people to be comfortable to start asking these questions or talking about these issues with a doctor.

Dr. Regina Koepp 18:44
How does one take prep? So is it like a pill and then you take it for several days, or what's the protocol for currently

Dr. Mark Brennan-Ing 18:53
It's, it's a pill and you need to take it every day. That's the the usual protocol. There's been some variations there. So they've done studies to see how adherence you need to beat a prepper how, how consistent you need to be about taking it every day. And there's some research that shows if you take it about five to seven days, or you know, within a week period, you'll have a pretty good level of the medication in your in your bloodstream. There's also been studies looking at what they call an episodic prep so that people don't take the medication on a regular basis, but when they expect they're going to have a sexual encounter. They take prep three or four days before that those data are a little more mixed. But there there are some options out there and it's really best to discuss this with the physician and and really know what all the costs and benefits to different types of prep administration would be. The The other thing that's coming out is they're looking at injectable prep. So rather than having to take this every day, you would take an injection every week or every month, similar to some of the things we're looking at with the antiretroviral therapies to improve adherence. So there are options out there, there are more medications coming out. But it's really important if, if you're going to be sexually active, and you are going to have casual partners who you can't really rely on to tell you their sexual histories, you should really be taking charge of your own sexual health, and that might involve prep that might involve condoms, that may involve exploring other ways to express yourself sexually, then penetrative sex. There are a lot of things out there.

What are the social, cultural, and medical reasons that adults 55 and older live with HIV longer before getting a diagnosis?

Dr. Regina Koepp 20:48
I'm so glad that the field is evolving, because it's reducing distress and increasing, I think healthy behavior, which is great. The other piece about older adults working with their medical providers is is really important. I was reading recently about HIV statistics in the US. And CDC has a page just for older adults and HIV, or HIV and ageing page. And on their page, they talk about older adults actually being the group, or maybe over 50, or 55, being the group of adults who are more likely to be further along in the HIV illness course, than any other age group, because they get tested later. And I wonder if you could speak about that, because you're talking about something so important, which is getting established and care, and being and talking with your provider about your your sex life and activity, and how to have healthy sex. And I wonder if you would share a little bit about how to start the conversation with your provider?

Dr. Mark Brennan-Ing 21:52
Well, so I'll start with the ageism piece, because I think that's probably driving a lot of this. You know, as I said earlier, on, there's still this idea that HIV is a disease of younger people. So, you know, the other thing is that a lot of the HIV and STI prevention messaging is also targeted at younger people. And you may not be aware of, if you're an older adult, and you had a really rudimentary sex education class back in the 60s, which I suffered through, but you may not be really thinking about sexual health and sexual risk. It was a couple of years ago, now I did a talk for some older adults here in New York. Here on the Upper West Side, so you know, this was a fairly middle class, well educated, racially and ethnically diverse group. And a lot of them were sexually active, and a lot of them didn't really consider they were putting themselves at risk for STI eyes. And we had some very free conversations that night. I could say I literally scared the pants back on a couple of them. But they just that was just not something they were thinking about at all. And, and that kind of translates into a clinical setting. So you know, the symptoms of HIV can be like a lot of other illnesses, like the flu, you know, you may have a slight fever, or you may feel nauseous, you really can't diagnosis without doing the test. And so providers and older adults themselves may not really think about situations where they may have put themselves at risk for HIV, and may not think that this could be a possibility. I've heard a number of stories about fairly older, like people in their 70s and 80s. going in, they have a son diagnosed complaint. And then you know, at the end, they say, oh, let's give him an HIV test. And it turns out, they're HIV positive. So, so that's not something people are really thinking about. And in their contacts, they're not getting tested regularly for HIV. Now, even Medicare now will pay for an HIV test. So, but they're not being given routinely. So here in New York, we have a law that you're supposed to be offered an HIV test, at every medical encounter, emergency room, all that I can tell you at my last wellness visit this fall, I was not offered an HIV test. Even though my provider knows that, you know, I'm in a relationship with another man and you know, in a high risk group. So this isn't being done regularly, and a lot It is because providers are afraid of offending people by offering them an HIV test. Because because of the stigma, the idea that, you know, if you have HIV, you either have to be, you know, gay having sex with another man or an injection drug user promiscuous, or, you know, whatever it is. So, so people aren't being offered testing, and they're not going out and looking for testing.

Dr. Mark Brennan-Ing 25:28
And so what you have the situation you just described that older adults, when they are diagnosed with HIV tend to have been living with the disease for a longer period of time. And that can lead to a situation of what's called a dual diagnosis of HIV and AIDS. So that's someone who was diagnosed with HIV, and then they receive an AIDS diagnosis within 12 months of that initial HIV diagnosis. And the AIDS diagnosis is based on a number of criteria, it can be that your CD4 count, which is an immune T cell falls below 200, it can be that you develop some kind of opportunistic infection associated with HIV, like kaposi sarcoma. So approximately a third of people over the age of 50, who were diagnosed with HIV receive a dual diagnosis. And that compares to about 15 to 20%, in younger age groups. Wow. So so you know, having a diagnosis of AIDS is not a good thing. But there are bigger health implications to this because even though we have a good treatment for HIV, it does not, you still have the virus in your body and your immune system is still reacting to it.

What is "inflammaging" and how does it intersect with HIV?

Dr. Mark Brennan-Ing 26:46
So one thing is we see us as chronic inflammation, that that also happens with aging, sometimes it's called "inflamaging", right? But we know that chronic inflammation is related to a number of health conditions like cardiac disease, it's been implicated in Alzheimer's disease and other dementias, a whole host of things, so. So even with the antiretroviral therapy, you still have this inflammation going on. The other thing is that you kind of wear out your immune system with untreated HIV, and that the immune system is really trying to gear up all of its resources to attack the HIV virus. And really, what's a good for kind of targets itself towards HIV. That leaves it less able to respond to other kinds of threats, and other kinds of illnesses we may encounter as we get older. So that that, for example, could be cancer, it could be some other kinds of kind of infectious disease. But the longer HIV goes on treated, the more inflammation you have, and the more damage to your immune system functioning that you have. And what that results in is developing other kinds of comorbid conditions in addition to HIV. And even in treated individuals, we see that older people with HIV have a greater number of chronic conditions compared to those without some of our research is finding approximately three conditions on average, in addition to the HIV disease. And this is happening at a younger age for people with HIV. they're experiencing these things in their late 40s 50s and 60s, when most people without HIV don't have these multiple co-morbid conditions or multimorbidity until they're in their 60s 70s and 80s. So there's been some talk about accelerated aging. Do people with HIV get these diseases at an earlier age than people without HIV? The evidence is pretty mixed. At this point, it looks like that may be happening. The accelerated aging may be happening at the cellular level or in terms of certain organ systems. But really good controlled studies aren't finding the people are necessarily getting these diseases at an earlier age, but they are getting more of them. And that has a lot of implications for medical care.

Dr. Regina Koepp 29:32
Yes, and quality of life

Dr. Mark Brennan-Ing 29:34
and quality of life.

Dr. Regina Koepp 29:36
Yeah, and financial expense and home health assistance needed all sorts of things. You know, we're talking a lot about physical health. And of course we know that there is with with groups that experience higher rates of stigma and discrimination. There are also there's also more vulnerability then to mental health conditions, because we internalize the stress that, you know, leads to minority stress and which is internalized, internalizing the "-isms". Right. And so can you talk a little bit about the overlap between mental health concerns and HIV?

How does stigma affect people living with HIV?

Dr. Mark Brennan-Ing 30:17
Sure. Well, you know, if you just look at gerontological research in general, one of the best predictors of depression and other mental health issues are physical health problems. So, you know, we're already talking about a population that is characterized by a disease condition, which many have been dealing with for decades. In addition to that, you have all these other factors that can put you a risk for depression, other behavioral health issues. So stigma is, is a really big one, right? Some of the work we've done with older adults with HIV here in New York, has shown that stigma was a really strong correlate of depressive symptoms than these older adults.

Dr. Regina Koepp 31:09
Will you define stigma for us?

Dr. Mark Brennan-Ing 31:11
Sure. So stigma is basically the being labeled as being in a discredited group. It's I think, it was Erving Goffman, who described it as a spoiled reputation. So that so it's something you carry out socially. You know, if you think of the the novel The Scarlet Letter, where has her head where the big a on her chest, that was a stigma, that was a very obvious stigma. But for people with HIV, a lot of the stigma rises not only because they have a infectious disease, but because of certain behaviors that are associated with that like same sex behavior, or injection drug use. So So in addition to dealing with HIV, they have to deal with these discredited identities. And a lot of times that stigma is externalized into discrimination and and mistreatment. This feeds into another big component of depression, which is social supports and loneliness. So when people are stigmatized, it affects their social networks in two ways. One, they can be ostracized by family, friends, members of their community, for having HIV or having this disease. So they may be cut off. If you compound that with other intersectional stigmas, like same sex behavior, or diverse gender identities, or racial and ethnic minorities status, or ageism, this all kinds of kind of compounds.

People living with HIV experience depression at 5 times that of the general population. Learn some of the reasons why.

Dr. Mark Brennan-Ing 32:53
One way people react to stigma is something that my friend and colleague, Charlie Inlet, described as a self protective withdraw, in that, you know, that stigmas out in the world, you know that you're going to receive this discriminating treatment. So you just tend to isolate, to avoid all of that. And indeed, you know, our work has found that about a third of older people with HIV are very socially isolated, and very lonely. And those are two factors right there that not only contribute to poor mental health, but to poor physical health, right. So one thing we see in this population or rates of depression, that are about five times we'll be seeing the general population.

Dr. Mark Brennan-Ing 33:42
And when I worked in, in visual impairment before I got into HIV, one of the big findings there was the high rate of depression we saw in this group, another group that suffers from stigma and, and functional disability because of their disease. And when I looked at HIV group, the rates of depression were about twice as high as people were visually impaired. Another group that already has really high rates of depression. So it's, it's been kind of a big question in the field of HIV is where's all this depression coming from? One thing we know is depression can also lead you to do risky things that can cause you to get HIV to have unprotected sex or multiple sexual partners or, or being in in situations of sexual risk. Depression could be a immediate and long term reaction to receiving a diagnosis of HIV. I know that was true for one person I interviewed for a study who actually had a master's degree. He worked in HIV prevention counseling, and then because his partner was unfaithful, he ended up getting HIV, which threw him into a huge depression because, you know, he was someone who supposedly should know better. So not only was he depressed about the HIV, but he was also really being unkind to himself about having contracted in that situation. So we don't know these, you know, people with HIV may have been suffering depression long before they were infected, this could be an ongoing issue for them, it could be a reaction to a diagnosis, it could be a reaction to what happens to them post diagnosis in terms of their health condition, developing comorbidities, experiencing stigma now as an HIV positive person.

Dr. Mark Brennan-Ing 35:44
But one thing we know is it's way too high. And depression and other behavioral health problems like substance use, can interfere with being adherent to antiretroviral therapy. And unless we really address these behavioral health problems in a serious way, we're never going to get to these ending the epidemic targets of you know, 90% of people being virally suppressed, it's just not going to happen. Right? Yeah.

Dr. Regina Koepp 36:20
Is there any component of the unmanaged HIV physiologically creating a depression. So I'm thinking about vascular depression in older adults, that there are some, there's some like physiology that changes when folks have a vascular disease, and that can create a depressive kind of illness.

Dr. Mark Brennan-Ing 36:49
I'm very familiar with that. From a family member who had a stroke, and then, you know, in the Depression was probably the hardest circlet of that, for him to deal with other than, you know, the, the physical impairments from the stroke. I don't know if anyone's really looked into that specifically, with people with HIV. You know, I would say, in general, we don't have a good understanding of the etiology of depression in this group. But what we do know is that a lot of them are not having their depression, other behavioral health problems managed in a good way, you know, so we get to the other side of it, you know, alcohol and other substances can impede your antiretroviral adherence. But there's also research coming out now is showing that they may make those antiretroviral therapies less effective. One study suggested that even one drink of alcohol a day could compromise the antiretroviral therapy.

Dr. Mark Brennan-Ing 38:00
There are just too many barriers to care. You know, a lot of people with HIV are unable to work or were in a lower socioeconomic position when they were diagnosed, and they're getting their care through Medicaid. And Medicaid is wonderful. It's been expanded in a lot of states. But it does not have a sufficient capacity to treat the mental health and behavioral health problems in its population. We were doing a study of testing out a social support intervention for depression. And we had somebody come in, he got a very high depressive symptom score. He had not he was not connected to behavioral health care. And according to the standards of care in New York, anyone with HIV who shows evidence of significant behavioral health problems should have a psychiatric evaluation. So we got on the phone, we're calling you know, do you know a Medicaid provider, you know, psychiatrists, we finally found one, it was going to be three months before this person could get evaluated. And so as you can imagine, we never found this person after three months. Who knows what happened to them? Another example is, we were working with a local aid service organization that had a mental health clinic to recruit people actually was for the same study and our arrangement with them was that when we screened clients, positive for depression, who weren't connected to care, we would give a referral to their clinic. So that, you know, a good situation made sense for everybody. We overwhelmed the clinic within two weeks of just their own clients, who were screening positive for depression who weren't connected to care. So there's just not enough capacity in the system for people.

Dr. Mark Brennan-Ing 40:06
And the other problem is that we've moved to a model of mental health care in this country that relies a lot on medication. So people go in, they get prescribed an antidepressant or something else. And then they have a maintenance visit every six months or something like that. And there's a lot of research that shows that medications work really well. But they work best in combination with some other kind of therapy, whether that's group therapy, or one on one psychotherapy, or something like that. That just isn't happening. And a lot of older people with HIV, when you know, in the study, when we were talking to them, did not want to be put on yet another medication, right, they're taking at least one medication for HIV is sometimes more than that. And then it's very likely that they're taking medication for some of these other physical health comorbidities. So you know, we're adding one more pill to that burden of polypharmacy that they're already dealing with, and they're just not interested in taking any more medication. So in addition to creating capacity in the system, I think we also have to recognize that not everybody wants to be treated for mental health issues with a prescription.

Dr. Regina Koepp 41:29
Did your study happen to look at if people were interested in doing psychotherapy?

Dr. Mark Brennan-Ing 41:37
Well, we did, we did make sure that people were connected to mental health care, and most of them did, were either in some kind of group therapy or individual psychotherapy with a provider. Our intervention was really to address that isolation, social support side of it, where we had a care this was based on the MacArthur Foundation project respect model, where people would get a phone call once a week with a care manager, just to check in on them. It wasn't telehealth, it wasn't therapy over the phone, it was really more of a Hi, how are you what's going on, kind of thing. And it was really, really effective at reducing depression. The other innovation of what we did, I think it's really important to point out is that there's a lot of substance use in this population, both past and current, a lot of mental health providers will not start treating mental illness until the substance use issue is resolved. And that becomes a huge barrier to care for people. We didn't put that limitation on people we are we are enrolling the study. Some of them were active substance users, we had some rules around that, in terms of you know, not not be using while the care manager is talking to you and things like that. And a lot of people once their depression started to resolve, they would tell the care manager Well, I haven't used whatever it was for a couple of weeks now. So you know, actually dealing with the depression dealing with the mental health problem, improve the substance use behavior. So I think we really need to think, think about this more about how we deliver mental health care in this country. I don't think this is specific to people with HIV, but I think it's illustrative of the problems in the system in general that we probably need to address.

How can we help meet the medical and mental health needs of aging adults with HIV?

Dr. Regina Koepp 43:37
Yeah, we can be so absolutist even in who we include in studies, you can't have had a suicide attempt or I mean, all sorts of restrictions and exclusion criteria for who can even participate in research, sometimes, oftentimes. Okay, so I'm feeling very hopeful. For the medical side of HIV, there's prep, there are anti retrovirals. And I'm feeling very disappointed in the mental health projections and HIV. So help me though, because I don't want to stay in a hopeless place. So what are we doing in the field? Or where are we moving? Or what can we do you know, professionals and people who have loved ones who are living with HIV, people who are living with HIV, what can we do collectively and then by group so help it help help generate some hope here because I don't want to stay in a dark place around this and I don't want I don't want people living with HIV either who have experienced too many hardships if especially if they've experienced homophobia or transphobia or racism and plus ageism, and now stigma with HIV. I don't want to leave people in a hopeless place...

Dr. Mark Brennan-Ing 45:01
Well, there is good news. So and a lot of this was prompted by the physical health concerns. In other words, what's the best way to care for somebody who has multiple co morbid conditions? So a lot of us have been working on how do you you make the bridge between geriatric care and HIV care. And, you know, let me just say geriatric care is not just for people in their 80s and 90s. It's really for anyone who has issues like older adults have in terms of multiple comorbid conditions and multiple medications and things like that. So so that's been very helpful. It doesn't we have a shortage of geriatricians in this country. I think I quoted 12,000 at one point on a webinar, and somebody corrected me with a lower number than that. But in the entire United States, let's say there's less than 12,000 geriatricians. So it's not feasible to get everybody with HIV and geriatric care, we're talking about, you know, somewhere around half a million people over the age of 50. with HIV, that's not going to happen. But we can use geriatric care models to inform our clinical care of people with HIV. And they're very similar to comprehensive care models and patient centered care models. It's all kind of the same family. And the good news about that is that these coordinated care teams or individual care teams, don't just focus on one disease condition, they're looking at the entire person. And that includes their mental and behavioral health. And so I'm hopeful that as we see more and more of this happening in terms of HIV treatment and care, we're gonna see better attention to mental health issues. Because that is such an important part of it.

People living with HIV have "incredible reserves of resilience and survivorship"

Dr. Mark Brennan-Ing 47:02
The other thing I want to say, though, is what people with HIV themselves bring to the table. And that is incredible reserves of resilience, and survivorship. So, you know, we're talking about long term survivors with HIV who were diagnosed in the 80s, when there was no treatment available. They've been living with this disease for over 30 years. And there's something about them, which we're not exactly sure what that something is, but there's something about them, that has allowed them to survive the slog, and to keep fighting. And that's what they're bringing, that's what they're bringing to the table. And we need to think of ways we can support that resilience. People, you know, people with HIV and older people with HIV, aren't looking for some kind of a handout, or, you know, some kind of like nanny care or something like that. They want to live as independently and autonomously as everybody else, what they need more as a hand up, they need some support, there are certain things we could do in the society, to help support them and care.

How do we reinforce resilience to promote mental wellness in people living with HIV?

Dr. Mark Brennan-Ing 48:15
And, you know, so for example, I've looked at religion, spirituality a lot is as a resilience factor. And when I first got into this work around vision impairment, I was accused of, you know, having some kind of hidden agenda about, you know, getting people to find religion and getting them into a church or, you know, whatever that was. But that wasn't the case, what what I found, and then, you know, as I've continued, continue to do this work in HIV, is that's a really important coping resource for people, the spiritual beliefs. And being affiliated with a church or faith community or synagogue, or a mosque is also an important part of a physical community is social support. So it helps people in two ways one, you have that, that supportive network that really does help out in times of need, and can expand your social supports greatly. But also, you have the belief system that helps you to cognitively and emotionally process things that help happen in your life. And my message about this has always been, you know, religion, spirituality aren't for everybody. But for people whose it's important, we should find a way to support that, you know, another, to take it out of that space.

Dr. Mark Brennan-Ing 49:37
Another important source of resilience for people are their social connections, and the supports they get. And so we should be thinking about what kind of interventions programs can we do to help people enhance their social supports, when I do needs assessments of older people with HIV, the thing that comes up on top survey after survey year after year, city after city it doesn't matter are we need opportunities to socialize and connect with other people. And they don't really see that happening in terms of, you know, the existing service structure at aid service organization. They may not, they want it outside of a social context. And they want it in a context with other people like themselves where they don't have to do a lot of explaining and telling their story over and over again, but really, just have a community place to go and hang out somewhere. That's, that's what people want. And that's another like simple way we could be supporting resilience in this group.

Dr. Mark Brennan-Ing 50:44
I think it's important, a lot of times we talk about older people with HIV, we're talking about all the problems they face. And and we do that for a reason. Because if we don't do that, it's gonna be really hard to get the resources we need to help help people that are dealing with these problems. But we need to remember these are resilient people. These are autonomous people, these are smart people. And these are people who want and are able to control their own lives and destinies, and our job is really to support them in doing that.

Dr. Regina Koepp 51:23
Mark, thank you so much for your time today and all of the information that you shared with us I, I am delighted that we're ending with a message of hope and resilience, and, and survivorship. I think that's a very powerful place to end and, and to leave our listeners.

Dr. Mark Brennan-Ing 51:44
And thank you for, for having this as a topic of one of your podcasts and bringing some more attention to this issue.

Dr. Regina Koepp 51:51
Happily, if you run across New research or a new big study comes out, please let me know. And I would love to bring you back and revisit any new new findings and or new recommendations.

Dr. Mark Brennan-Ing 52:04
Sure, of course.

Dr. Regina Koepp 52:05
Great. Well, thank you so much.

Dr. Mark Brennan-Ing 52:08
You're very welcome.

Dr. Regina Koepp 52:10
That's all for today. Now it's your turn. All you have to do is subscribe, leave a review and share this episode with others so that they can be part of the conversation too. One last thing, a special thanks to Jasmine Joyner our psychology of aging podcast in turn for all you do. Lots of love to you and your family. Bye for now.

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