Transcript of Talking Heads with Dr. Noosha Niv – Episode 6
Empowering Voices: Dr. Marcia Hunt on Advocacy, Peer Support, and Meaningful Recovery
Announcer: This is talking heads. Explore the latest in research and policy about serious mental health disorders with Dr. Naan.
Dr. Niv: Hi, I’m Dr. Niv and today’s guest is Dr. Marcia Hunt. Dr. Hunt is a clinical community psychologist and currently serves as a senior health services researcher at Rush University System for Health focusing on aging and serious mental illness. She is also an associate professor adjunct in the department of psychiatry at Yale. University Medical School where she was previously an associate professor. Dr. Hunt worked at the Veterans Health Administration for almost 15 years, serving in multiple roles, including associate director of the VA Northeast Program Evaluation Center, where she was responsible for evaluation of programs designed to assist people with serious mental illness. In addition to program evaluation, Dr. Hunt’s research focuses on the relationship between valued social roles and life functioning. Welcome, Dr. Hunt. Thank you so much for joining me. I really appreciate Yeah,
Dr. Hunt: sure. I’m very happy to be here today.
Dr. Niv: Let’s start with just like what led you to psychology and then more specifically the focus on serious mental illness.
Dr. Hunt: Sure. I had kind of a funny path to psychology. So I was an architect before. That was my first job when I got out of school. I did that for about six or seven years. And through a lot of different things that happened, I decided to shift focus and was trying to figure out and find myself So, I did some substitute teaching and the place that they needed substitute teachers the most were the juvenile justice system in the uh temporary uh and transitional prisons for kids. And so that’s what I did for about a year. And I spent a lot of time talking to the kids in there cuz I was teaching English and they were not really interested in, you know, diagramming sentences. As you can imagine, nobody’s very interested in diagramming sentences, but But their stories were amazing. Some were intensely sad. And I just thought, “Oh my gosh, who helps when people are in trouble like this?” I was that naive about psychology and everything else. And so I started asking around and digging around and I was like, “Oh, psychologists do that. Well, maybe I’ll go be a psychologist.” And so that’s what led me to psychology.
Dr. Niv: That’s a big change for an architecture.
Dr. Hunt: For sure it is. Yes. I had had one psychology course that I don’t think I paid a lot of attention to um in my undergraduate years. But once I decided on that and started taking some psychology courses and then trying to get into graduate school, I met my main mentor uh Kathy Stein and she’s at Bowling Green and has worked with people with serious mental illness for a very long time. And through my journey, I found out that my grandmother had serious mental illness and a really good friend of mine’s brother that I grew up with had serious mental illness and I didn’t know it as that. I just knew them as them and sometimes they had good days and sometimes they had bad days and sometimes they were confusing and so that kind of cemented my interest in that and my wanting to help out where I could and learn more about it.
Dr. Niv: Wow. So there was definitely that personal component.
Dr. Hunt: Yeah. That I didn’t realize until later. Yeah.
Dr. Niv: And what did you end up when you you were working with Kathy Stein and What were you studying at that point?
Dr. Hunt: Well, she was uh a clinical community is a clinical community psychologist. So, that’s sort of my bent. I’m interested in working with systems and systems of care that help people sort of through understanding what those people want and need. We we were taught a lot by individuals in the community with serious mental illness. We would partner with them to make changes with things, whether it’s in day programs or in hospital settings or just generally understanding their life. and life course. And so I was a student of the folks in in and around Bowling Green for a long time and worked with them there. And then that passion for making systems change and elevating people’s voices stay with me.
Dr. Niv: So So those system changes sound like it was really driven by the people you were working with in the community rather than kind of top down research.
Dr. Hunt: Right. Absolutely. Now that’s not to say that we didn’t apply research methods to things to help get people’s voice out. So we did a lot of qualitative and quantitative combined stuff for people to be able to sh in different ways for people to share their stories right through questionnaires which are great but not as rich as people’s stories I think but the idea was we would utilize those data to talk to the community agencies to help them move things forward so did a lot of program evaluation and different things like that as well with all kinds of systems I I worked a lot with housing.
Dr. Niv: And is that when you talk about some of the changes, were they practical changes that people using these services could really notice in their day-to-day life?
Dr. Hunt: I think so. Uh actually, you know, both pieces. People providing services get confused and end up doing things that people don’t really want and people receiving services don’t understand why they’re not getting what they need. And so, we sort of helped people come together. The housing agency that I worked with, I learned so much there. We started out by trying to help the agency understand better what their case managers did to help people. So it became really apparent that the main thing a main thing that was going on was centering around how close the relationship was between the CA case managers or care managers and the folks that lived in the apartments to the point that some of them had okay lots of them had pets and this was a no pets kind of place. as most places are.
Dr. Niv: Most places are. And the pets were understandably if you’re a pet person. I have dogs. They’re very important to you. So, we helped the agency make changes to implement a pet policy in a way that they were comfortable with because they were very uncomfortable with pets and in a way that helped support the pet owners and tenants um so that they could come out of the shadows with their fish and birds and cats and dogs.
Dr. Niv: So, you not the agency to accept pets as a and you wrote a paper on this and found some really clear themes that emerged from interviews with with these folks. Can you talk a little bit about what those themes were?
Dr. Hunt: A lot of it was that it’s a valued social role being a pet owner, right? You you’re providing care for that pet and you’re making sure that they’re doing well. And when we have valued social roles, they help us feel better about ourselves, all of us.
Dr. Niv: So, a sense of responsibility.
Dr. Hunt: Yes. And you meet people that way. Your picture of your cats on your phone and somebody sees it and now suddenly you are having the role of cat owner talking to another another person and the role of cat owner and you know you’re in the park with your dog and so it helps you make social connections. Pet ownership does. It helps you have that valued role. It helps you provide care for something and feel needed and wanted even if you don’t have other people or things in your life. you know that that thing loves and wants you whatever it is a fish a cat a bird. So that’s really important and that was a a main thing that came through
Dr. Niv: that sense of connectedness and the sense of respons being responsible for something or someone else.
Dr. Hunt: Absolutely. Yeah. And and just being valued by them. I mean there’s nothing nicer than coming home and having your pet be thrilled to see you
Dr. Niv: right. And if you don’t have a spouse or kids or you know as we know a lot of people with SMI are fairly lonely.
Dr. Hunt: Yeah. Yeah. Or even if you do, I mean, I have a husband, but he doesn’t greet me in the same way my dog does.
Dr. Niv: It’s that sort of unconditional connection, isn’t it?
Dr. Hunt: It is that unconditional con connection. It really is important. And so that sort of thing came across loud and clear. And that’s why I think you talk to people who are don’t have a house and are are living on the street. living wherever they’re living and if they’re offered a place where they can’t bring their pets often they’ll say no it’s just it’s not worth being housed if I have to give up you know my family member
Dr. Niv: so I’d rather be homeless and have this animal that I love
Dr. Hunt: absolutely
Dr. Niv: than to have stable housing but not but have this significant loss
Dr. Hunt: significant loss absolutely like giving up your family member
Dr. Niv: this is such an interesting you know I I had never read anything in this topic this There’s not much research in this area, is there?
Dr. Hunt: No, sadly. Yeah, cuz it’s it’s very important. You do see more in the in the housing literature rather than in the serious mental illness literature. But, you know, we’re all people. We all need places to live. We many of us have pets. And so, I think um we forget that people with serious mental illness have the same wants, needs, and desires as anybody else that doesn’t have the label. And so, you’re going to find pet owners and you’re going to find, you know, every flavor of person like you would in any other group.
Dr. Niv: You talked about advocacy. You you’ve actually written quite a bit about um recovery movement and its connection to social justice movement
Dr. Niv: and how they are similar but also not necessarily serving one another. First, let’s talk about that connection. What is that connection?
Dr. Hunt: Yeah. I mean, well, historically, the recovery movement really grew out of a very strong advocacy at work that people with serious mental illness pushed, right? The nothing about me without me part of the movement. And so, you know, everything has a life cycle. So, the recovery movement had a life cycle, too, right? It was birthed in advocacy and it then it developed and became a little more concretized and people worked very hard to get it embedded into systems of care. But when you embed things into systems of care, they become institutionalized and the institution then take them from the advocates and they begin to write their institutional policy and things like this hopefully involving the people that were part of that advocacy movement but often kind of moves along without it and when things become institutionalized some of the passion falls away it becomes everyday now and there are good sides to that so recovery as an everyday thing is a very good thing right all of the premises of recovery institutionalized into policy is a very good thing. But I think now we’re ready for the next step with that. And I would love to see more advocacy coming out of the grassroots of people with lived experience saying what’s next? Recovery is a terrific first step. Let’s make sure it’s everywhere next.
Dr. Niv: I want to get to what’s next. But when you talk about it loses some of its passion, so sounds like it’s kind of diluting what you think were intended unintended consequences of that movement. How is it doing that? I mean, obviously, you know, especially when big organizations or mental health community clinics or government organizations primarily, it adds a lot of regulation and bureaucracy. I mean, that’s really part of it, but is there something else that you’re referring to with that kind of delusion of the energy and passion behind it?
Dr. Hunt: Yeah. And I think it’s it really is about that bureaucracy. When the bureaucracy works, it’s a good thing. But often the voices are lost. So you still see people I mean clearly you still see people in institutions of care that have checked the box that their policies are recovery oriented and the people’s treatment on a dayto-day basis does not necessarily align.
Dr. Niv: It doesn’t reflect what they actually want
Dr. Hunt: right necessarily. And even how the policies themselves are interpreted and implemented I I just I have a fantasy of taking modern day policies and talking to the original people who started the advocacy work with deinstitutionalization and saying is this what you wanted is this where you were headed is this aligned
Dr. Niv: yeah did we go off path are we wandering in the wilderness now you know when you talk about kind of that they check the box of yes we’re doing this I remember um I consulted with a clinic once that was like yeah we do recovery oriented care and what they meant by that is they asked about it in their assessment, but then they didn’t actually offer any of the interventions that might get people towards those goals they identified in the assessment.
Dr. Hunt: Right. Absolutely. Absolutely.
Dr. Niv: Not going to work.
Dr. Hunt: Exactly. I’ve seen that so often.
Dr. Niv: So often like asking isn’t enough. We got to actually do the work.
Dr. Hunt: Exactly. I had very similar experience, you know, doing program evaluation and people would say, “Yeah, Right. We ask people exactly what they want because we’re going to tailor programs to them. And I’m like, cool. Well, it looks like this person wanted X, Y, and Z. Do you guys offer that? No.
Dr. Niv: No.
Dr. Hunt: You know, we offer five things. And I’m like, but do they shift based upon what people have said? Well, we can’t really do that. And I’m like, I think we’ve missed the point here.
Dr. Niv: And my guess is that you from your uh experience, my guess is what those five things they do offer really are geared towards symptoms rather than what people are asking. for
Dr. Hunt: absolutely. Yeah.
Dr. Niv: Where would you like this to go? You know, what is it? When you say what is go to the next thing, what does that look like and who can help do that work?
Dr. Hunt: Yeah. I don’t even know if I’m in a position to answer that cuz I really feel like it’s people with lived experience in the world today picking up that banner and saying, “Okay, now this is what’s needed.” Um, I mean, I can work to put myself in that position, but if I’ve never had to live it, I can only guess and you know base it on on what I think I I really I think it’s about voice right so part of it is not just having a board or having peer providers or having a group look at policy not saying that’s not important it’s really important it’s necessary but not sufficient so I think the next step is asking where does our organization go now what do we need what should we do with whoever is willing to step into that role and and frankly people need to be paid for it? You know, they’re people are acting as consultants by helping organizations change then consultants get paid money. Can’t we pay these people money? If they’re consulting, I’m just saying.
Dr. Niv: And and more than just that like here’s $20 to be in a study, right? Like to really come in and do that work is takes time and effort.
Dr. Hunt: Exact. Can I back up? I You and I, I think we have an understanding of what lived experience means, but what does that mean to have lived experience?
Dr. Hunt: Yeah. So, I I guess to me most it means having a label, rightly or wrongly, that you’ve had to move through the world with. So, it it because that makes a difference on top of any symptoms you might have, anything like that. And I say it makes a difference because I think about my grandmother and my grand mother had bipolar disorder. I’m pretty clear about that. But she never had the label from a medical person,
Dr. Hunt: somebody who could diagnose because they just didn’t back then. She just was moody. She’s very moody, you know, and she had really, really, really bad days and really, really, really good days where she was a lot of fun.
Dr. Hunt: And so when I think about her experiences of living through the world, she had to live with those symptoms, right? She had to live through those really bad days and those really good days and how she took care of her kids and everything, but she didn’t have to struggle with the label on top of it.
Dr. Hunt: So, I think it’s a combo. It’s whatever is going on in your life and your body and whatever label we hand you in our systems of care that you then have to also cope with,
Dr. Niv: right? And that label is going to produce different outcomes in different settings.
Dr. Hunt: Absolutely. Because you get treated differently,
Dr. Niv: right? You talked about, you didn’t word it this way, but it of like patient centered care, you know, that’s at least that’s how I kind of conceptualize how you describe this.
Dr. Niv: What are aspects of patient centered care that you think are important?
Dr. Hunt: Yeah, I I think the main one is as a provider being humble and realizing you’ve got a skill set like everybody’s skill set, it’s limited and you need to figure out what parts actually help the person in front of you. And that’s being person- centered and being enough to say, “Wow, I’ve got, you know, a wrench and a screwdriver and a hammer, and you need a tape measure and cock, so I need to find somebody else who we can partner with to do those things.” As opposed to saying, “No, you know, I have a hammer and a screwdriver. Clearly, you have a problem that is either a nail or a screw, and we will be doing that.”
Dr. Niv: Got it. So, I’m going to force the thing I know how to do on to that,
Dr. Hunt: right?
Dr. Niv: And but part of that is also giving people a voice in your treatment, right? And I think this is a real challenge because so many times you see a therapist or medical doctor and they’re the expert. Absolutely.
Dr. Niv: When they’re the expert in terms of like book studying and maybe experience with their clients,
Dr. Niv: but ultimately the patient is the expert in themselves. So, how do you bring their voice into a session?
Dr. Hunt: Yeah. Well, I I think like I said, I think it starts with being humble, right? So, your expertise if if you are really good at hammering things and screwing things in. You have to realize that and you have to realize that the person in front of you is their own expert. If you you have to keep remembering that if you’re hearing something from them and you’re thinking, you know, I don’t think that’s true. I think it’s really something that that I can use my hammer on. You need to realize, take one step back and say, listen to them. What is that need? I think you can only do that realizing your own limitations. And and that’s always a dangerous thing like emotionally dangerous for people. I think when we think about our own limitations, it’s like, “Oh, I don’t want to think about that.” Um, but you have to do that before you can help raise their voice. Because if you think about it, if I’m the expert and I know everything, and you’re sitting there listening and thinking, “Yeah, but that doesn’t work for me.” It’s too easy for me to squash you and say, you know, whether I’m intending to or not, to squash you so that you think, well, I’m probably wrong. I I should try this one more time even though it hasn’t worked the last 15 times I’ve tried it.
Dr. Niv: And you know what we’ve called that in in treatment has changed a lot over years. Um but I think today most of us would recognize that is shared decisionm.
Dr. Hunt: Yeah. And that has good ways to do it and checkbox ways to do it. Right.
Dr. Niv: Tell me about both. What do you what do you see that let’s start with the not good way the checkbox right? the store.
Dr. Niv: What does that look like?
Dr. Hunt: I’ve talked with some folks about this and I was I’m always surprised to hear that their definition of shared decision making is I tell you what I think you need to do or medication you need to take or whatever. I let you say what you think and then I’ll write you a prescription. We do apply that medication. Yeah.
Dr. Niv: So, I said something, you said something, we shared it and now here’s what you do.
Dr. Hunt: That’s I mean it’s a little exaggerated but but I think it It goes a little bit back to what we were talking about with programs. If you ask the question, right, if you’re going to have a discussion about shared decision making, then you, the professional, the expert in your area, may not like the decisions that the person makes because you may think you can see down the path and see how it will turn out. Maybe you’re right, maybe you’re not. But you have to be able to say, “Okay, here’s what I see are the risks. Here’s what I see are the benefits. This is what you’re telling me if I’m right and those are the right risks and the right benefits. Are you good with that? Right? That kind of approach where it really is just a weighing out because ultimately it’s the person you’re talking to’s life. They have to make those decisions. You you can’t make them for them. Just like I couldn’t say no, you have to go live in an apartment without your pet because it’s better to have a roof over your head than to have your animal. That’s not my decision.
Dr. Niv: And ultimately, if you don’t have B in they’re not going to follow through, right?
Dr. Hunt: Absolutely. I mean,
Dr. Niv: would you?
Dr. Niv: I certainly Yeah. I’ve talked to my doctor and they’re like, “Oh, you should really, I don’t know, exercise every day.” And I’m like, “Yeah, you’re right. I should. It’s never going to happen. I’m sorry.” Right.
Dr. Hunt: Exactly.
Dr. Niv: You know, one of the things when you talk about the hammers, nails, and the, you know, all these tools is what it brings to mind is one, you know, clinician being humble, but then also having the resources to then say, “I don’t have the tool set you’re looking for and but having access to someone who does.”
Dr. Hunt: Absolutely.
Dr. Niv: And that is hard. You know, part of what you’re talking about is a group of people working together.
Dr. Hunt: Yeah.
Dr. Niv: And there are not many systems that actually work that way.
Dr. Hunt: You’re absolutely right. And even less if you’re a private practitioner, because I’ve been talking a lot about folks maybe want to get therapy in the community and very few private practitioners feel like they have the connections or the tools to help out whether they do or they don’t but I think it is very hard to have a group of people which I think is the best way I prefer my healthcare with a group rather than a singular person and I’m not sure what to do about that without really large system changes in our entire country
Dr. Hunt: cuz that sort of coordinated care you might get in a larger system you know such as the VA but I think it’s really hard as a if you’re private practice like you’re not going to have that sort of coordinated care are you?
Dr. Hunt: Not unless you work very hard to make those links and I think that’s where I mean if we’re talking about leveling the playing field in healthcare we need to understand that that doesn’t just mean for people who have small things going on with them at any given time. We need to be able to accommodate people who have large physical health concerns, large mental health concerns and or both and aging and dementia and all of the other things that happen to us in our lives and we’re not set up for it. We’re just not.
Dr. Niv: Not at all. So, so we really need to make systemic changes to how healthcare is delivered.
Dr. Hunt: Yes.
Dr. Niv: In order to meet that need. So, you know, I I don’t want to be pessimistic, but um I I think that’s where you talk about advocacy is needed to make that happen. But that’s kind of a big picture longer term goal.
Dr. Niv: Today, I am seeking treatment. How can I add advocate in my treatment setting to at least get a mod of that?
Dr. Hunt: That’s a really good question and I think it’s very tough. That’s the sort of unfair thing about self advocacy. You know, nobody asks you to advocate for yourself when nothing’s wrong cuz you have nothing. You’re in the middle of a healthcare crisis one way or another, you know, and that’s when you’re supposed to advocate. So
Dr. Hunt: that’s it’s a terrible place to be.
Dr. Niv: It’s terrible place to be for anybody. So I think the best you can do is take somebody with you that you trust. Take somebody with you that’s not coping with whatever it is you’re coping with so they can be your voice. And that means making sure the people that love you or even the people that don’t love you that are willing to help out um know your wishes, right? That know your your advanced directives essentially uh mental and physical health that they’re able to push for you when you can’t or you’re just giving up.
Dr. Niv: And if I’m just new to getting care, maybe it’s not in an emergency setting, maybe I’m trying to get connected with community mental health care.
Dr. Hunt: Yeah,
Dr. Niv: I suppose one way is to inquire upfront about is there a psychiatrist, a psychologist, a case manager, and people with different expertise, but most people don’t know what to ask for in that regard.
Dr. Hunt: Absolutely. And that’s where I think, you know, talking to other people who’ve been through things is really helpful. Really helpful. And
Dr. Niv: how can people do that? Get that sort of peer support.
Dr. Hunt: Yeah, the peer support. Well, it I mean It kind of depends on where you are, but there are certainly are groups and other advocacy groups. It’s kind of, you know, you can, thank goodness for the internet. You can look up a lot of things on the internet and find some help that way. And then like everything else, it’s the trial and error piece. Talk to somebody. Does it fit or doesn’t fit? Talk to somebody else. Does it fit? You know, and just kind of try it out.
Dr. Niv: We’ve talked about peer support kind of more generally, but in terms of uh including peers in actual treat treatment.
Dr. Hunt: Mhm.
Dr. Niv: There’s been a lot of research on that. Are you in your work? Have you seen whether you know people do they do they like those experiences? Do they not like them? Do they want the professional? Or do does the having the peer really help make the experience more relatable and get them more engaged?
Dr. Hunt: That’s a really good question. I have to like disclose my bias. So, I have worked with some amazing peers. So, I have worked with very few lemons. I worked with a lot of superstars. And so what I have seen from my superstars, there’s nothing like working with a peer provider. Uh ever since the very first guy that I ever worked with um on my team, I was revamping a screening clinic and trying to help teach incoming psychiatrist, psychologist, social workers, as well as screen people for health care needs. And he he made the whole thing work. Frankly, people would come in and they’re anxious and he would be able to sit with them and talk to them, be like, “Ah, look, I’ve been here. Let me tell you, and and really kind of make them feel like, okay, if this guy is part of my team and he sort of runs between me and the other providers, how bad can they be? Like, I think he can keep them in line.” And that’s exactly how he worked. And so, I’m a big fan of peers.
Dr. Niv: It increases that trust between
Dr. Hunt: It increases the trust. It decreases anxiety. And so our peers were part of the team meetings afterwards where we’re trying to figure out, okay, you you were able to talk to the person, the peer was able to talk to the person, here’s what we think we can do for them, and he was very strongly able to take their voice. You know, you tell people different things depending on who they are. You may tell your primary care person about the ache in your toe, but if you’re going to go see a heart specialist, you’re not going to mention your toe. same thing in the waiting room. They would talk about their lives in a very different way than in a clinical interview. And so we were able to put those two pieces together. You know, he was able to say, “Oh, no, no, no, no. That will not work and here’s why or that would be a good thing, I think, from what he said or she said.”
Dr. Niv: So they’ll just disclose more
Dr. Hunt: different
Dr. Niv: different things.
Dr. Hunt: But but that’s that trust piece.
Dr. Niv: Yes, that’s the trust piece and and just the kind of I think level of comfort and decrease in anxiety
Dr. Niv: and what a um hopeful thing to see appear. Oh yeah. But you know when you’re struggling to see someone who’s gone through those same struggles or similar struggles and to see that they are are working and helping others and in a place where they’ve made some gains in that area.
Dr. Hunt: Yeah. Really helpful for the person who’s struggling with illness themselves and really helpful for the system because the system can get jaded when you come in for acute care for something. They see see you at your worst, right? They see you with a horrible infection. They see you with symptoms you are not coping with. They see you with all these sorts of things and and they see the next person that way and the next person that way and the next and pretty soon your window of the world narrows to, oh, everybody must have a really horrible infection. Everybody must be trying to cope with symptoms that they can’t cope with and that’s not true. So peers also provide hope to the system.
Dr. Niv: I think this is again going back to that um patient centered care I think it’s really easy as providers when your scope becomes so narrow is um you don’t see people as individuals in the same way right anymore right you see their diagnosis then we all think we think they’re going to have the same exact thing repeatedly
Dr. Hunt: exactly it it’s kind of like the surgeon that you hear say something like bring in the next knee well it’s not just a knee it’s actually attached to a person you know yeah I I’m going to switch gears. You’ve mentioned physical health intermittently and um you you brought up dementia and you know dementia psychosis can look similar in a lot of ways.
Dr. Hunt: They can.
Dr. Niv: And how do you go about kind of untangling the signs and the symptoms of these two very significant difficulties?
Dr. Hunt: Yeah. Yeah. I think that’s a a really good question and and one that you kind of have to go back to the history of the person I think, you know, most folks who uh develop psychosis develop psychosis early. There are some people who develop it later in life, but if you’re a provider and you’ve been around someone who for sure has dementia and you’ve been around someone who’s for sure got psychosis, then the feeling is wildly different. So on paper,
Dr. Niv: you mean how it presents,
Dr. Hunt: how it presents and how it feels, right? So when you think about if when you think about a delusion I think about my mother-in-law. She had pretty progressed dementia and I knew her through the process. She had lots of delusions and her delusions were around people coming into her room, people scaring her in a particular kind of way and people taking something that she had, right? Taking a piece of jewelry or taking a book or taking something. And she was very worried about that. And we checked those out because that’s also important. It’s only a delusion. it’s not actually happening,
Dr. Hunt: right? And sometimes they really happen. But so she had that going on. And then I think about other people I’ve known in my life who’ve had psychosis and their delusions are very different. They may also feel unsafe, but they feel unsafe in a very different way and they’ll express it in a very different way. And so that flavor is different. The timeline is different. It’s rare to see much older people develop schizophrenia or right it it’s not to say it doesn’t happen but it’s pretty rare.
Dr. Hunt: What is not rare is the fact that in nursing homes at least people develop the diagnosis of psychosis and schizophrenia because if you have a diagnosis of a serious mental illness where an antipsychotic is an a suggested treatment dementia it’s not but it’s a great behavioral restraint.
Dr. Niv: So They’ll get that diagnosis just so they can give the medication.
Dr. Hunt: Yes. So they can give them medication. And it’s a pretty well documented increase in this over the last 10 years.
Dr. Niv: Is that because they’re they can’t give antipsychotics off label?
Dr. Hunt: It’s a workaround.
Dr. Niv: And so they get this diagnosis rather than the dementia diagnosis.
Dr. Hunt: Well, they have a dementia diagnosis and now all of a sudden they have a diagnosis of schizophrenia at age 68 with no previous symptoms and frankly I’m not necessarily convinced that without stretching it they meet criteria for that either. But
Dr. Niv: aside from the dementia piece, what are some things we need to think about when working with older adults with the semi?
Dr. Hunt: Yeah. Well, I think a lot of it is the same kind of thing that you think of as you’re aging period, right? You’re going to have sort of a one-two punch. I start to say something about valued social roles. So valued social roles in our in our lives are tied to the timeline of our lives. So when you’re younger, you’re a student. You’re not often a student later in life, right? Later in life, you have a job of some sort possibly. When you’re seven, you don’t. So you have different roles at different times in your life. And you know, there’s a childbearing age and there’s a non-childbearing age. So these shift as we go. The tough thing when we think about psychosis, particularly schizophrenia, and and other serious mental illnesses throws you off that life trajectory often times. You’re not dating at the same time other people are perhaps. You’re not starting a family at the same time or maybe not at all. You know, it it just shifts you out of what society thinks of as normal.
Dr. Niv: These are typically delayed or don’t happen at all.
Dr. Hunt: Exactly. Typically delayed or don’t happen at all. So, if you have that and then if you have a normal life progression where now you’re past an age to be a parent and now you’re past an age to to do whatever. Um, as we get older, those roles change and decrease,
Dr. Niv: right?
Dr. Hunt: And so, you’ve got a one-two punch. You may have be been thrown off trajectory with delayed or or things that didn’t happen for you and then as you get older, the even the opportunities go down. So, I think we have to think very much about that layering of lack of opportunities or opportunities that seem to be shifting and changing. Some of that is based very much on society’s view of ageism and other isms related to folks that don’t seem to fit the exact same Barbie and kin mold that you know society holds in their head. I think just being aware of that and being aware of what it means to have to cope with this offtimeness and lack of opportunity some governed strongly by society some biology but I think that’s really really important. think about when you’re working with people as any age, but as you go through the life trajectory and the fact that making meaning in your life and you know thinking about who you are at any given time in your life as roles change. It’s really important thinking about how that would look in therapy but also thinking of how that might look you with family members is to help create opportunities even if they don’t fit that traditional timeline, right?
Dr. Niv: But also giving people an opportunity to grieve that not having achieved
Dr. Hunt: Right.
Dr. Niv: Whatever they may have wanted to achieve but couldn’t.
Dr. Hunt: That’s right. And I think normalizing that.
Dr. Niv: Yes.
Dr. Hunt: I think it’s very difficult when you’re in the depths of your grief around things like that to feel like it’s just you. You’re the one who lost. You lost out. Everybody else got it and you didn’t. And so I think saying, “Yeah, that really stinks.” And it has happened to other people and they’ve managed and they’ve made different meanings in different ways. And you know, whatever it is, you know, maybe you desperately wanted a kid and you didn’t have one or maybe Maybe you desperately wanted a job or a particular kind of job and you didn’t have it or whatever it is,
Dr. Niv: right? And it’s okay to grieve that and know you can cope with it. Those aren’t mutually exclusive,
Dr. Hunt: right? It’s not just you. And it’s more than okay. It is normal.
Dr. Niv: I mean, I I’ll bet you there’s not a person who’s gotten to some point in their life and gone, Dan, come I’ll never whatever. Right.
Dr. Hunt: Right. And this is not SMI specific, obviously.
Dr. Niv: It isn’t. It’s the person thing and I think that’s you know realizing that a lot of what we talk about a lot of people deal with you know it’s those are natural changes in life unfortunately if you have SMI you get to layer all that other junk over the top of it that doesn’t lessen all those other losses it just means you have this and another basket of stuff to carry too we talked a little bit about loneliness and generally as we age we can get more isolated again not SMI specific but again can happen even more in that population. Yeah.
Dr. Niv: How can we help prevent that? Because we know that social contact is really important,
Dr. Hunt: both mental health and physical health.
Dr. Hunt: Yeah, I think that’s a great question. I’ve done a lot of thinking about this um from both perspectives, both an aging perspective, an SMI perspective, and a combined perspective, but I think it’s important to remember that loneliness and lack of social interaction are not necessarily the same thing, right? So that I think That’s important. I hear my mother in my head saying, “I’m not a joiner. Don’t make me join things.” Right? So, some people are just not joiners. They It’s just the way they are. I think we have to also recognize that people’s social interactions come in many, many flavors. Sometimes sitting at your window watching the postman come and go is your social interaction and you like it. Sometimes sitting in your window watching the postman come and go is your social interaction and it’s not enough. So, I think it’s important to realize that while you haven’t gone out to the movies or to find friends, that may be a real problem for some people and something to work on. And for others, it’s more like, have you gone to the grocery store and seen that checker that’s funny and always has those weird fingernails? That’s or maybe that’s just my checker, but you know, that’s an important piece of interaction for a lot of people’s days.
Dr. Niv: And and the research supports that in that it’s not nec really like the number of friends you have or how often you go out, but it’s your satisfaction with those interactions that you do have.
Dr. Hunt: Exactly. And I think that’s part of being in my bonnet around community integration with that too. I think too often we talk about community integration as the number of things you did somehow, right? How many times you go to the coffee shop, how many times you go to church, how many times did you blah blah blah. But I think community integration is much more of a feeling. Watching that postman, talking to that checker and and and maybe it is going to town halls for you, but I think it’s that feeling of belonging. I know I belong because, right, I’m integrated in this community because or I’m not because and so that’s very individualized. And I think we have to recognize that as well.
Dr. Niv: It’s not a quantitative.
Dr. Hunt: It’s no and and it makes it harder to study. I get that, believe me. And so we like nothing better than counting things and comparing this total to that total or this average to that average.
Dr. Hunt: Um I I I wish it were that simple, but I think in reality it isn’t.
Dr. Niv: I have a couple of questions um from my Facebook group for you. First one, my grandmother is diagnosed with schizophrenia. We were recently told she also has dementia. I’m not clear on what type of care she should be getting. Who should she see for treatment?
Dr. Hunt: Wow, that’s a tough one. I would start with someone with a gerontology specialty. So, a geropsychologist, a geropsychologist, preferably both, or a team of gerontology specialists.
Dr. Niv: Okay.
Dr. Hunt: Um I think would be the best bet. And and there’s some really good folks that specialize in in uh serious mental illness and dementia.
Dr. Niv: That’s good to know. Okay. This we we touched on this a little bit, but I’d love to hear your answer. Since Dr. Nick keeps talking about the importance of shared decision making and finding a therapist that honors that. I don’t understand that what that means. When my husband is so sick, I’m taking him to an expert to make those decisions. Right.
Dr. Hunt: I I I hear you because I’ve said that to myself when I go to my gastroenterologist. I really just want them to tell me what is best to do. And so I think you can say that and say, I need your expert opinion. Were you me, what would you do? Because I feel lost here and I need that. And we can talk about whether or not I will do it, right? Like what what’s my buy in and can I? But sometimes the expert piece needs to come out and I think that the care provider needs to understand that as well. And
Dr. Niv: and that can be frustrating for a family member, right? if their loved one who’s ill is not going along with this expert advice.
Dr. Hunt: Yes. And so how do you sit with that as a family member?
Dr. Hunt: That is really hard. And I think that’s where the rubber meets the road with autonomy. So if you said to me, are are you a fan of autonomy or a fan of paternalism? I’d say, oh, autonomy. Until you said, okay, your mom has congestive heart failure and she’s, you know, not taking her medication. I’m like, ah, paternalism,
Dr. Niv: right? And she’s smoking on top of it.
Dr. Hunt: That’s right. Non-stop. That’s right. Did you know my mom? But yeah. Um, so I I I think that that is Gosh, it’s such a personal thing. It’s such a personal decision. I know that for myself, I tried to take over and push I tried to explain why, right? When I would do, and it really was my mom. I really was trying to push her behavior and was letting her know I wanted her to be around. And, you know, sometimes she would not, and most of the time she would just go do what she was going to do. And so, it was left to need to sort of resolve it internally. But it’s there is no answer to that.
Dr. Niv: It’s a tough one. And it’s a tough one when you’re a spouse or someone actually living with the consequences of someone else’s decision.
Dr. Hunt: Absolutely. Absolutely. And I think at that point in time, you have to also think about how do you care for you? Not that you shouldn’t be thinking about that always. Particularly in those situations where you have little power and control over things that are impacting you. What do you do to take care of it? And how do you sort of shield yourself from those decisions if That’s what’s happening.
Dr. Niv: And and maybe that’s not feasible and you have to set boundaries for yourself.
Dr. Hunt: That’s right. Absolutely. And that’s part of the shielding I think right is setting those boundaries. Like you can be supportive in lots of ways and boundary setting is sometimes one of them because sometimes what people need to hear is you know what no line in the sand.
Dr. Niv: Mhm.
Dr. Hunt: It can’t happen anymore or it can’t happen with me around or whatever’s going on. And then that sometimes that helps the person shift sometimes. and to think about um maybe reframing it as you know what are your goals and will doing what this doctor is saying help you and us as a family get closer to them
Dr. Niv: exactly to those goals and reminding them and I think sometimes when we’re asked about our goals sometimes we say what we think people want to hear so you may have to be cognizant of that when you’re talking with someone around that and and helping them set their own boundaries and I know from my own personal experience and working with my family and loved ones that I know what I’m supposed to say. So, my goal is to feel better. But you got to dig a little deeper cuz that’s not going to motivate me.
Dr. Niv: No. No. It’s usually some sort of something to do with friends or a job or my relationship with my kids or something a little more nuanced than feeling a little bit more.
Dr. Hunt: Yeah.
Dr. Niv: Um, last question for you. What are you most excited about in the field of psychosis? What are you seeing as really the thing that has the potential to impact lives and improve outcomes.
Dr. Hunt: That’s an interesting question. I think I think it really is for me the expansion into so many areas of peer providers. It really is. Um I loved, like I said, working with them and I feel like that peers in as many settings as possible, as diverse as possible, will maybe shift us to the next place. And maybe they’re the ones that pick up the advocacy banner and move forward to shift the system next.
Dr. Niv: Well, I look forward to see where that goes. Thank you so much for your time. It was lovely having you with me and I love chatting with you.
Dr. Hunt: Yeah, me too.
Dr. Niv: Such a unique way of looking at this field and I really am I’m grateful for it.
Announcer: This is talking heads.