An Interview with Psychologist Ami Shah
Ami Shah, Psy.D. is a licensed clinical psychologist in private practice in New York and New Jersey. She specializes in working with adults and geriatric patients and helps support caregivers suffering from burnout (in particular caregivers of those with dementia, cognitive decline, and medical illness).
Adithi Jayaraman: Great. Thank you all for joining us today for The Seattle Psychiatrist Interview Series. I'm Adithi Jayaraman, a research intern at Seattle Anxiety Specialists. We're a Seattle-based psychiatry, psychology and psychotherapy practice specializing in anxiety disorders.
Today, I'd like to welcome Dr. Ami Shah. Dr. Shah is a clinical psychologist in New York who specializes in working with adults and geriatric patients. She also specializes in the areas of bicultural, multicultural identity, relationships, marriage concerns, family, individual stress, and grief and loss. Dr. Shah received her master's and doctoral degrees in clinical psychology from the University of Indianapolis. Today, we'll be speaking to her about her work with caregivers and caregiver burnout. So, before we get started, Dr. Shah, can you please share a little more about yourself and what made you interested in working with caregivers?
Ami Shah: Yes. Thank you for the lovely intro, Adithi. So, my journey to becoming interested in working with caregivers was a bit roundabout. I initially started off thinking I wanted to work with kids, and as I began to work with individuals clinically in training, I recognized there was a large gap at that time in terms of older adult care, and then when I did my fellowship... I'm sorry, I had done research prior to that at the VA in caregiver interventions for older adults that have dementia. That was the first time I was exposed to and recognizing there was a big gap in terms of, we were working on a research project at that time, it was a phone intervention, long before we had Zoom, and we were working on a phone intervention to provide emotional support for caregivers of veterans that had dementia at that time. And from that, during fellowship, we continued to do caregiver work in the same capacity, primarily as well caregiver interventions for veterans, again, that have dementia.
So, that was the capacity I started, and now most recently, I work at a skilled nursing facility and I'm seeing folks who are caregiving a number of older adults. So whether it's primarily, it's secondary to, say, a fall. Perhaps it's chronic falls, it's chronic pain. Sometimes it is cognitive decline. So, there's a number of caregiving capacities. That's sort of the capacity, so the capacity and context I'll be talking about is primarily in working with adults and older adults.
Adithi Jayaraman: Perfect. Thank you. Yeah, and then on that note, can you provide us a working definition of what caregiver burnout is and how common it is in the States?
Ami Shah: Yeah, I think that's a great question. Caregiver burnout I think is, it may go through waves, and sometimes it doesn't. So, it really depends on a number of factors. It's quite complicated, actually. When we think about caregiving someone at a certain point in time, say for example, I'll speak to individuals I see currently, if you're caregiving someone that perhaps fell once, it depends on the nature of the injury. The context is always critical in any of these situations. If it's a one-time fall, depending on their age, their premorbid functioning, the caregiving capacity could be more acute and short term, and so perhaps it really may not necessarily disrupt or impact someone's functioning as much.
What becomes a bit more complicated is, depending on the nature of the injury, but also understanding the caregiver's individual life and responsibilities, including their own health, caretaking other folks. So, burnout, really the word burnout, I think it's important to understand at a single point in time, what is the experience of the person they're caretaking and what is the experience of the person that is doing the caretaking? Of course, as we all know, burnout is essentially saying, at a certain point of time, someone is perhaps giving more than they're able to at a certain point in time, which can of course contribute to feeling distressed.
I know with, for example, caregivers of dementia, at large, again, this is generalized... I'm trying to think back. I think 60% at some point report experiencing some sort of, quote, unquote, "burnout", and sometimes as much as 40% may experience clinical depression. And so sometimes it can be a depressive episode, which can be normalized to, well, what is going on at that point in time? So yeah, I would say even more than the commonality, it's important to understand the context at a certain point in time.
Adithi Jayaraman: Thank you, thank you. And then in terms of, you kind of alluded to this, but what are some of the main concerns or themes that you've seen in your work with caregivers and the general caregiver population?
Ami Shah: I think one of the biggest factors is thinking about more of the structural. So, depending on, again, the context here of caregiving, in the sense that if someone is prepared mentally to care-give X, Y, Z person, there's time to plan. So, for example, I see a number of folks here, it's a skilled nursing facility, folks are here for physical rehab, oftentimes due to a fall, multiple falls. So, they've been here more than once. So, if the caregiver has time to think about, for example, if they're planning on being discharged home as opposed to a skilled nursing facility, perhaps that lessens the, quote, unquote, "burden" of responsibility, where they can call insurance, make sure the house is safe for return. So, in more the physical or structural capacity.
Oftentimes, what happens is folks are not always prepared. Sometimes insurance, I would say more than 80% of the time, determines how long someone is staying at a facility, which then can directly, indirectly affect caregiving if they are also, again, aging themselves, working, have other responsibilities, personal responsibilities. It creates this increased stress for everyone that's involved. I think another thing too in terms of caregiving, again, in the capacity of primarily older adults that I see, is finance. Things that we don't necessarily talk so much about. How are we going to finance certain things if insurance doesn't cover it? If there's multiple kids, family members, money is one of the biggest topics that come up. And time. Who's going to care-take so-and-so, and to what capacity, if it's not in a skilled nursing facility?
Another thing is, which comes up quite often in working with older adults, is what they call decision-making capacity. If there's sort of two major, and I'm speaking about it broadly, if so-and-so, Mr. Smith is unable to make decisions for himself, first of all, how are we determining that, and what decisions? So, say Mr. Smith, he recovers from rehab, he's like, "I'm ready to go home," and there's questions about his cognitive capacity. Who's making those decisions about where he goes next? How are those decisions being made? It's not always that clear cut, I'll tell you that. It looks pretty on paper and in textbooks, but in reality, things are moving fast.
So, considering also that individual, Mr. Smith's sense of autonomy in this process. If so-and-so has decision-making capacity, is able to, to some extent share an awareness of why they're in a facility, what they're being treated for, that then directly, indirectly affects caregiving capacity. Are we allowing Mr. Smith the opportunity to say, "Hey," and this comes up a lot, "I would rather just go home"? And they're saying, "I'm not sure we have the time or ability to care-take." Then what? If someone has the ability to speak for themselves and the caregiver is saying, "I'm so overwhelmed," what do you do?
These are family conversations that oftentimes I think bring about a lot of tension for the caregiver, anyone involved with caregiving Mr. Smith. So, I think that comes up quite a bit. And the autonomy part, is caregiving means helping someone to get through X in some capacity, and I think with that, sometimes Mr. Smith may lose his voice at times, assuming he has that capacity. And even if he has, say, mild cognitive decline, he still has feelings. So, it's thinking about how... Caregiving, it goes two ways. Caregiving also means recognizing, preserving someone's autonomy, and it's little sometimes, right? It's allowing someone to eat on their own or maybe they make a little bit of a mess, and it's not the end of the world. So, I think those are big themes.
Adithi Jayaraman: Yeah, it shows caregivers go more beyond just caregiving physically, but also emotionally, spiritually, mentally, and that's definitely a large feat to hold.
Ami Shah: Oh yeah.
Adithi Jayaraman: Perfect. Thank you. And then in terms of caregiver burnout, can it be prevented, or what are some steps that a person can take to reduce it or to prevent it coming on?
Ami Shah: That's a good question. I think it's quite complicated, again. To your first point, can it be prevented? I guess that's like saying anything else that could be prevented, is who knows? If we were to think about it, if it's something that's more abrupt and sudden, someone caretaking, say someone falls and then they're working and they're not expecting their mom, for example, to fall, and suddenly they're in this capacity, there's a shock factor, one. Emotionally coping with, "Mom fell, oh my gosh. Maybe I'm aging as well." Again, context on both ends.
In that moment, I think number one is seeing if you can have at least someone to talk to in that moment in time. If it's a friend, family, a therapist, it doesn't matter. In some capacity, having a place that isn't mom, because you're both going through this thing together and perhaps you both need an outside person or professional, that would be my opinion, others may say otherwise, to kind of walk through that. And number two, the structural, which is calling insurance and making sure, because a lot of the distress comes from, "Is this covered? Is this not? What do we need to pay for?" A lot of stress comes out of the finance, like I was saying before. So, the stress can be by educating yourself on the insurance policy. These are very real stressors that come up.
So, I would say prevented, who knows? It depends on what you're going through at that time. I have some caregivers who, before they even fell into the role of caregiving or perhaps chose to be a caregiver, they already had a therapist. They already had a solid group of friends and a spouse, partner, whatever, and they tend to perhaps at least emotionally feel a bit more sound. So, I think the prevention part, it's a tricky question, because I think at large, we need to do a better job with understanding what contributes altogether with folks' distress, even before they're in the caregiving capacity.
Oftentimes, a caregiver capacity can exacerbate existing stressors. If someone has a history of depression, for example, and then they come into this caregiving capacity, whether it's suddenly or even over time, depends on the severity of it, how stable mentally are they feeling before taking on this pretty large responsibility? It's almost like caretaking a child. I'm not sure if that answers the question, but...
Adithi Jayaraman: Yeah. No, makes sense.
Ami Shah: Yeah.
Adithi Jayaraman: Yeah. No, thank you.
Ami Shah: Yeah.
Adithi Jayaraman: I think that's very interesting. I think that even the finances you brought up, that's something I think that not many people talk about, and I can only imagine how much, if you're abruptly placed in that role and you have to figure out the whole healthcare system in a few days.
Ami Shah: Right. It's a nightmare.
Adithi Jayaraman: Yeah.
Ami Shah: It really is, because even if the caregiver is in the healthcare field, I mean, it took me at least two years with time to really understand health insurance and how it works. These are things that even if you're in school as a mental health provider, we're not taught how to. And insurance, it's all about billing, and that then directly, indirectly affects caregiving. If insurance isn't going to cover certain services, such as physical therapy, which comes up a lot, physical therapy, is Mr. Smith better going to a facility that offers that? Is that covered? That then affects the caregiving quality of life, and for Mr. Smith. So, that's a difficult job.
Adithi Jayaraman: Yeah, definitely.
Ami Shah: You know?
Adithi Jayaraman: Yeah. There's a lot of infrastructural forces that are-
Ami Shah: Oh, sure.
Adithi Jayaraman: Yeah.
Ami Shah: Yeah.
Adithi Jayaraman: And then in terms of once a person is no longer a caregiver, do you tend to see that they normally just bounce back, or there's some rebounding or burnout continues? What have you seen post that caregiver position?
Ami Shah: That's a good question. I'm not sure I'm equipped to even answer that, because I'm not necessarily seeing folks post-caregiving. I primarily see them when they're in the moment.
Adithi Jayaraman: In the moment. Mm-hmm.
Ami Shah: If I were to imagine some folks that have taken on caregiving as their sole responsibility, I imagine if Mr. Smith ends up and it's sort of this informed decision where they've discussed it and he has that capacity to make a decision and agreeable to it, I imagine things might be a lot lighter, in this sort of picture-perfect scenario. Which is great. Doesn't always work that way. So, maybe I said this a million times, but the context is important at that time. So, again, burnout is a certain point in time. It doesn't necessarily mean they feel that way at all hours of the day.
Adithi Jayaraman: Yeah. No, that makes sense. And you mentioned how a lot of preexisting mental health concerns get exasperated by this caregiving position. So, when you treat caregivers, do you oftentimes, it goes beyond just talking about caregiving, goes into some of their root fears or concerns that are brought up by the responsibilities they have as a caregiver?
Ami Shah: That's a good question too. I'm trying to think back to when I first started doing the phone interventions. Well, it was part of a research study, I should add. The research study is about focusing on caregiver distress, so we did talk about, it was primarily about caregiving as opposed to even, are you saying even going beyond the caregiving and talking about their own needs?
Adithi Jayaraman: Yeah.
Ami Shah: Yeah, that's a good question. In the capacity that I've seen folks for caregiver distress, not so much. More recently, I did speak to an individual who was caregiving her husband who had aphasia, but this individual already had a therapist, and so it wasn't my place to sort of-
Adithi Jayaraman: Oh, yeah. Yeah.
Ami Shah: So, we just focused on the spouse. But I think the times that, I'm trying to think too, there have been times where I've suggested they speak to someone. It depends on the capacity and the setting you're seeing someone in. So, for example, when I was at the VA, it was a research intervention. It was protocoled. It was a bit more like session one, session two. That's not reality all the time. At the nursing facility I work at now, obviously the patient many times is the primary focus, and if they're unable to, in this case, this gentleman with his aphasia was having trouble with speech, is when I sort of went to the caregiver and to kind of see the best way to support him. So, again, our focus was on him.
Adithi Jayaraman: Yeah.
Ami Shah: And she also had shared she had someone. But it's certainly, to your point, it's a great idea, I think to explore. And this is more short-term acute care.
Adithi Jayaraman: Yeah, yeah.
Ami Shah: I seem them one to five times. This isn't long-term therapy.
Adithi Jayaraman: Exactly, yeah.
Ami Shah: And a lot of times in these settings where you're meeting caregivers, it may be in a hospital setting. Not always. Perhaps I'm just speaking to my own experience. If you're in a setting where you're allowed to and you're able to, and again, see someone beyond just the patient, you can explore if it wouldn't be conflicting to see the caregiver as well, or perhaps even provide them resources if you're unable to for whatever reason. So, yeah.
Adithi Jayaraman: Wow. Thank you. And just one last question. How has your work changed post-pandemic? Have you seen some significant changes in the caregiver field and just generally mental health-wise in regards to caregivers?
Ami Shah: I think that question is a great question, and it's complicated, because I think post-pandemic, it's hard because there could be a number of factors. I'm not sure I can just pinpoint the pandemic as the only factor, but I think as human beings, which then of course translates to caregiving to some extent, and with increased use of technology and social media, think of climate change, I mean, there's obviously all the things happening in our world, there's sort of this increased, I should say decreased distress tolerance capacity as human beings.
And so for example, in the setting that I'm in, sometimes when someone wants something, whether it's the patient or the caregiver, they want it now. And yes, of course, there's certainly, if it's an emergency, it's a crisis, that's understood. That's a given. But it's sort of a top-down effect. It's that all of us are experiencing this sort of vortex of, "You need to get this done right now or else," in some ways, because of inflation. But things are more costly now for folks. So, if things are more costly, then I'm going to have less time to spend caretaking Mr. Smith, and then Mr. Smith gets less from me as his daughter, then that sort of creates that trickle effect. So, the economy, the environment, I think perhaps we're just sort of aiming for good enough. Perfection is sort of an illusion here. So, as long as we can say, "Hey, am I doing enough today? Am I able to at least accomplish what was necessary to get done today?" and just leave it there.
Adithi Jayaraman: Yeah, definitely. And I think that mindset just applies to all of us and-
Ami Shah: Yeah.
Adithi Jayaraman: ... the capacities we're functioning in. Yeah.
Ami Shah: Absolutely.
Adithi Jayaraman: Definitely. Well, thank you again so much for your time. I really appreciate you being part of our interview series. Yeah, and I'll leave it there. Thank you again, and best of luck with your future endeavors.
Ami Shah: All right. Thank you.
Please note: The views expressed by the interviewee are for educational and informational purposes only, are not meant to diagnose or treat any condition, and do not necessarily reflect the views of Seattle Anxiety Specialists, PLLC.
Editor: Jennifer (Ghahari) Smith, Ph.D.