Caregivers Need Care Too

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Tom Haederle

the United States by the year: 2060

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Tom Haederle

Welcome to Advancing Health, the podcast from the American Hospital Association. I'm Tom Haederle with AHA communications. In this podcast, Raahat Ansari, senior program manager of Population Health with the AHA talks with Diane Mariani, program manager of the Social Work and Community Health Department at Rush University Medical Center, about customizable interventions to support family caregivers. Rush has developed a caring for caregivers model to share resources and guidance that help family and friends who care for older adults better manage their own health and wellness while meeting their loved ones needs.

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Tom Haederle

Rush University Medical Center has been recognized as an age friendly health system, an initiative of the Johnny Hartford Foundation and Institute for Health Care Improvement in partnership with the and the Catholic Health Association of the United States. Age Friendly Health Systems is a movement that aims to enhance care for all older adults by implementing the forms framework focused on what matters to the patient as well as medications, mentation and mobility.

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Tom Haederle

Let's join Raahat and Diane in conversation.

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Raahat Ansari

Thanks for joining us today. Today we are here with Diane Mariani, program manager at Rush University Medical Center in Chicago. And she's here today to talk to us about the Rush's Caring for caregivers program. Diane, welcome.

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Diane Mariani

Thank you, Raahat. So glad to be here today.

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Raahat Ansari

Of course, we're we're so happy that you were able to make it and make it here in person.

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Raahat Ansari

One of the perks of being in is sharing a beautiful city together. That's right. well, I was hoping that you could start off by telling us a little bit about this really important program that you have, the caring for Caregivers program. Tell us a little bit about it.

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Diane Mariani

rs program, was, initiated in: 2019

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Diane Mariani

so they're, a wonderful source of, grant support and, funding. And we decided to develop a program for family caregivers because family caregivers are really a critical part. of critical support for the health care system. And they're really not recognized. They're kind of under under-recognized, undervalued, and, and not really supported. So with that funding, we created a program to ensure that we were identifying caregivers.

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Raahat Ansari

We were going to be, hoping to understand them and what their needs were and then providing support for them. That's fantastic. And just for our listeners who might not be aware of the organization that you shared, RH, could you just tell us what the what the organization stands for? well, they go by our oh, okay Foundation for aging, but it used to be named Retirement Research Fund.

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Raahat Ansari

and so they really have a focus and, and many focuses. But one of the focuses on the health and well-being of older adults. So the program that we created actually does kind of focus on those caregivers that are caring for older adults.

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Raahat Ansari

And that makes perfect sense. And that actually especially why you're here. Joining with us today to talk a little bit about how the important work that AHA does with the age friendly health systems work, which is a program, as you well know, which is geared towards implementing the forms framework, which is focused on providing enhanced care to older adults.

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Raahat Ansari

And the 4 M’s of that framework are what matters, and making sure we understand what matters to the older adults as well as their family. what matters? Medication and making sure they're on safe medications. If there's any need for high risk medications that that's evaluated and appropriately given mentation, constantly making sure that the older adult is being cared for and is in a good state and mental state, making sure that their depression and dementia delirium is all being monitored and tracked, as well as mobility and making sure that those older adults are being able to be safely mobile and, and reducing the risk falls.

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Raahat Ansari

But of course, that doesn't necessarily mean that they just sit in the chair and they sit in the bed. And that's that's definitely not the ideal way to be safe. So can you tell us a little bit about what you do in your program that is, that is specific to these older adults and how you pay close attention to that specific population?

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Diane Mariani

Yes, definitely. so rush is an age friendly health system, happy to say. And, so, you know, we we really recognize the importance of those forms in the care of older adults. And with our caregiver program, we also focus on those forms for the caregiver, which is really kind of special and unique. So the program really, as I mentioned, let me just say, first of all, that we really had a goal of kind of doing a systems change.

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Diane Mariani

And, you know, that's a big undertaking when you're really trying to do a shift, you know, almost a culture shift, you know, just and really getting just system wide, providers, and others to really recognize the importance of these family, caregivers in supporting older adults and that, you know, their health and well-being is just greatly correct, connected to the health and well-being right of of the who they're caring for.

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Diane Mariani

So in our program, we identify caregivers, including putting them into the electronic health record so that when a provider goes to open a chart of an older adult, it's clearly identified if they have somebody this providing care for them, contact information, etc.. So this already tells the the provider, the health care team that here is somebody that is kind of working in direct contact with this older adult patient of theirs, and they're an important member of the health care team, and they see them clearly.

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Diane Mariani

And then we also do a host of, assessments, evidence based assessments on caregivers to really identify what their needs are. And this is really geared to their mental and emotional and physical health. And as they are providing care and every caregiver is unique, you know, there's just so we do very individualized, approach in everything we do and we assess their needs.

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Diane Mariani

And then we develop a plan of support for them.

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Raahat Ansari

That sounds amazing. And I'm so happy to hear that the forms are being applied to those caregivers, because just like you said, that that group of individuals are so important to ensure that they are cared for so that they can provide appropriate care to their loved ones. Can you tell us a little bit about some of the outcomes that you've seen through this amazing program that you have?

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Diane Mariani

Sure. very excited about the outcomes that we're seeing. So for our caregivers, we're seeing, significant reductions in depressive symptoms, anxiety symptoms, and caregiver burden. So now, you know, some people may well what is caregiver burden. Well, we are really looking at and we assess for this. It's really what is the impact on health and well-being. Financial is included in there.

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Diane Mariani

Just overall you know, you know, what is the impact. And as they're providing that care in that, in that caregiving role. And sometimes it's really just about helping them develop a plan for themselves. And for the older adult, sometimes it's, bringing in additional resources and support. sometimes it's really working through family dynamics. That's a big one for many.

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Diane Mariani

and I think you really, you know, can't get around knowing and working with family dynamics when you're working with, with caregivers and care recipients. And it's also advanced care planning. So what's the plan? What's the current plan and what's the future plan. And we help them develop those plans

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Raahat Ansari

That, that makes perfect sense. I heard us talk about the steps of the program and that the first step is identifying those, those those dyad.

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Raahat Ansari

How how does that how does that work? Can you talk a little bit more about that?

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Diane Mariani

Sure. It's it's really interesting too, because, you know, we we use the term caregiver because we have to have some kind of a, a name to, to to be able to know what we're talking about. But so many that are providing care don't don't resonate with that.

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Diane Mariani

You know, it just doesn't connect with that term of caregiver. It's just something that they do. Just like naturally. Absolutely. You know, we hear I'm a I'm not a caregiver. I'm a son, I'm a daughter, right. This is my wife, etc..

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Raahat Ansari

So obviously you're going to run the groceries, you're going to take dad to the doctor's appointments. Just what you do if you're a family member and that means that you're a caregiver.

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Diane Mariani

That's right. You're providing care. So we we're really aware of the language we're using and the approach that we take, because if we just ask, are you a caregiver? We're going to get a lot of no's. And and let me just mention to when I keep saying family caregiver. And that's really just to recognize that there's also direct care workforce out there that are providing caregiving, which is very important as well.

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Diane Mariani

But when I say family, I really mean family, which could be family, friends, family of choice, neighbors, church members. It's really anyone who is providing some type of care and assistance. so we do really consider language and we ask questions of like, are you providing care? And then we list some of those as you did, you know, shopping and we mention because otherwise you're not thinking about it.

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Diane Mariani

and in additionally those assessments we do especially one particular one, it's called the burden scale for family caregivers. It really hones in on that. And it starts to kind of ask about some of those things. And that tool sometimes has somebody to self-identify. They'll sometimes, based on those questions, still kind of say, oh gosh, I am providing care.

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Diane Mariani

Or I didn't realize the impact this was having in my life. That's so interesting. So this assessment specifically, works to identify a burden that a caregiver may be experiencing or, yes, something. Okay. And of course, we hate that word burden, but that's the the name of the scales.

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Raahat Ansari

Sure.

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Diane Mariani

There it is. Yeah. But really it's just what's the impact, right.

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Diane Mariani

Because nobody wants to think that their, their loved one is placing a burden. Of course not. But it's really just honing in on like, you know, just what impact it has and how we can support and how we can minimize, any kind of strain that it may have because it is an additional, task. And some of those tasks are quite intense.

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Diane Mariani

Some of them are very medical in nature, and most of us aren't trained in those areas. And our it may not have been ready, willing or able to provide the care that we are now expected to be providing.

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Raahat Ansari

That makes perfect sense. and one of the things that we're we're expanding into, with the age friendly work that we're doing now, is having a little bit more of a focus on health equity and making sure that we're understanding the individual and and their background and the different cultures and the language and, how all of that plays into how one might, one might make their care preferences.

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Raahat Ansari

How how do you account for, for that in the, in the caregiver program?

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Diane Mariani

That's so important. and so as I mentioned earlier, we really look at each individual caregiver, you know, that caregiver caregiver comes to us, or as refer to us, and we're really spending the time to get to know them. In fact, we don't even call it a assessment when we work with them.

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Diane Mariani

We call them. We call it a getting to know you meeting. I love that because really, that's what we're doing. First of all, we want to make sure that they're heard because caregivers often go unheard. so we want to know from their perspective what's happening for them, you know, what kind of care they're providing, just what their situation is.

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Diane Mariani

You know, sometimes they're living with the person they're caring for. Sometimes they're a long distance, sometimes they're an hour, whatever it is. we get that. We have that conversation with them. So as we listen to them and have that conversation, first of all, we're hearing reflecting back what we hear. So we understand, making sure they're heard and understood.

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Diane Mariani

And then we do start asking those series of questions that kind of gets a little bit more information identifying their needs, but also what are their preferences. Right. You know, what are their, you know, culturally, you know, sometimes culturally they don't have a choice in providing the care. It's just part of what they do culturally that's not going to change.

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Diane Mariani

it can also be part of the culture not to have any additional support come in as far as like a caregiver or outside help if it's within the family. So those are the aspects that we take in and consider and just support that caregiver and developing a plan that works within, their beliefs, their values, their culture, etc.

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Raahat Ansari

that is amazing to hear that you are working to ensure that, all cultures are are accounted for and, and preferences are accounted for as well.

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Raahat Ansari

Could you tell us, could you share a story, perhaps about a time when you were able to account for an individual's and a family's cultural preferences?

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Diane Mariani

Sure. That's a good question. so there's so many different circumstances. I mean, my my mind is swimming right now, but I do have one, that I can share with you, that I think we've, we, we've seen several times, where for this particular person's cultural, you know, viewpoint, as the oldest daughter in this particular family, it was her role.

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Diane Mariani

I mean, that's just the culture is the oldest daughter is responsible for the care of the parents as they as they get older and as, as they need. So that was kind of her designated role. It was culturally part of what she was charged with doing. and but she was overwhelmed by it. And she was, her mom was caring for her mom at the time, who was diagnosed with dementia.

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Diane Mariani

And, she was also working at the time. And so what we did when what we worked with her on is because she she couldn't change the role and it was not an option to bring in additional help, so to speak. It was really kind of shoring up her, resources, her coping skills, and also, really helping her to understand, the disease that, you know, her mom had, you know, really giving her some education on, dementia and also really some practical tips, and resources for managing some of those behaviors and some of the aspects, you know, that maybe the repetition and asking something, how do you manage that?

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Diane Mariani

Some, you know, redirecting if somebody is asking over and over just different tips that she had not known before that really then gave her like almost like a toolkit to be able to use as she proceeded in her role. And it did reduce her burden and some of the anxiety that she was feeling about her role.

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Raahat Ansari

That's that's amazing to hear how you were able to benefit, provide benefit to that caregiver within those certain parameters so that that's amazing.

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Raahat Ansari

And thank you so much for sharing that. Can you tell us, a little bit, I understand that the program is is going national and that folks are able to join, at no cost to them. can you tell us a little bit about if an organization is interested in bringing this type of program to their, their organization?

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Raahat Ansari

How would one go about doing that?

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Diane Mariani

Oh, I'd love to share about that. So, as I mentioned, you know, the program was originally funded by our Foundation for aging, for the creation of it, and continued to support us over the years. and then the John, a Hartford Foundation provided funding for us to pilot test the model in six age friendly health systems to really just see, you know, kind of look at, you know, is it implementable in all settings or in a variety of settings?

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Diane Mariani

looking at maybe scaling and spreading it across the country. So we did do that. Pilot testing was very successful. And we did implement in a variety of settings. You know, we did a dialysis center. We did a geriatric, primary care setting, we did a caregiver research source center, etc., an AC unit, which is, an acute elder care unit.

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Diane Mariani

So we really got, you know, an understanding of, of, how this could be implemented in just various ways, in different settings. And so, based on that success, we were refunded by the Johnny Hartford Foundation to then share this model with other each for the health systems and area agencies on aging across the country.

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Diane Mariani

So really, they can just contact myself, or look at our website, caring for caregivers across the US and get in contact. And we are happy to just have a kind of a chat, a meeting to kind of explain the program and then what we do is really, like work with that particular health system to see how is it going to be adaptable for their setting, because not all settings have the same resources available.

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Diane Mariani

So we really work with, that setting to, to kind of develop, develop that plan. We do a full training and then offer technical support.

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Raahat Ansari

And I just want to get a little bit of clarification, because I think I heard us talk about how you are testing it in a dialysis center and different, and like the ACE unit, which all are, you know, clinical sites.

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Raahat Ansari

Did I hear about a caregiver resource center? And is that something that's a little bit non-clinical. And maybe you can expand on that for some of our listeners who might not be as familiar.

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Diane Mariani

So one of the sites that that pilot tested for us, was Northwell Health, and one of their settings was they have several caregiver resource centers within their health system.

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Diane Mariani

and so we tested that model there. It's not a clinical setting. It's not a medical center setting, although it's in within a medical setting, but it is a clinical setting because it's, like our program at rush, it's got licensed clinical social workers that are providing the employment, supporting caregivers. So what they were doing was a little bit more like care management for their caregivers and connecting them to resources.

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Diane Mariani

But what they weren't doing was what we do is going into those individualized sessions for caregivers.

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Raahat Ansari

Okay.

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Diane Mariani

So that's what they, they, brought into their resource center. So they kind of enhanced what they were already providing.

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Diane Mariani

And that's perfect. So it looks like there's a few different, ways to get involved, a few different types of sites that can reach out to you if they chose to be involved.

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Diane Mariani

Absolutely.

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Raahat Ansari

And I think we're just right on time. So just any last comments or anything that you wanted to share to our listeners

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Raahat Ansari

today?

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Diane Mariani

I think our goal is we just want caregivers to be supported, because when you support those caregivers, the care recipients are going to do better. And we have outcomes to show there, too. We're seeing reductions in Ed visits, lengths of stay and times that, older adults are coming into the hospital, which is really important for, for them and for health systems at large.

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Diane Mariani

And one last thing I'd like to add, is how can caregivers really get this information or get involved or get connected? So for caregivers that are in Illinois, they can reach directly out to Rush University Medical Center at the caring for caregivers program. And we can support them for those that are outside of Illinois, certainly watch for your health care system to be implementing the caring for caregivers program.

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Diane Mariani

But in the meantime, as we're sharing this model, I would suggest reaching out to your area agency on aging because most of them, if not all of them, do have caregiver supports and can connect you to, important resources.

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Raahat Ansari

That sounds fantastic. Thank you so much for your time today.

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Tom Haederle

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