December 5, 2024 • 29 mins
When we move away from specifying the care recipient's disease to focus on the caregiver, we find that different ways of talking about care experiences are very useful and descriptive. The Rosalynn Carter Institute for Caregivers together with Duke University created a system to describe various caregiver experiences called Caregiver Profiles: Are you learning about a new diagnosis for your family member? or maybe managing a static illness? or managing a system or setting change with your loved one? This way, we can talk about our experiences and needs as caregivers without sharing the medical details of our loved ones, and find commonality with people who don't even have direct care experience. For example: everyone has been through some kind of big change where they had to learn a lot at once.
Dr. Jennifer Olsen joins us. Dr Olsen is an experienced epidemiologist. She serves as Chief Executive Officer of the Rosalynn Carter Institute for Caregivers (RCI), which promotes the health, strength, and resilience of the 53 million family caregivers throughout the United States.
More information about the Caregiver Profiles is here.
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
Dr. Jennifer Olsen joins us. Dr Olsen is an experienced epidemiologist. She serves as Chief Executive Officer of the Rosalynn Carter Institute for Caregivers (RCI), which promotes the health, strength, and resilience of the 53 million family caregivers throughout the United States.
More information about the Caregiver Profiles is here.
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
[MUSIC]
(00:11):
Welcome to Love Doesn't Pay the Bills.
I'm Lisa Tschudi.
Joining me today is Dr. Jennifer Olson.
Dr. Olson is an epidemiologist, and she's here today as the CEO of the Roslyn Carter Institute for Caregivers,
which she has been for the past six years, doing quite a lot to make life better for family caregivers,
(00:39):
essentially, and I'm so excited to start this conversation.
I wanted to talk about the caregiver profiles that the Roslyn Carter Institute has developed
along with, believe it's Duke University, is that right?
>> Yeah.
>> Yeah.
>> Yeah.
>> Welcome Dr. Olson.
>> Thank you.
>> Yes.
(00:59):
>> Thank you for having me.
>> Yeah.
Why is it important to develop these profiles and shift the attention from a patient's diagnosis
onto their caregiver?
Why does this matter?
>> I think for anyone listening who's ever been a caregiver, they'll have experienced,
at least at some point in that journey, being asked first about the diagnosis or the condition
(01:24):
or the age of the person that they're caring for, and then that leads to a whole series of
what's your eligible for, what could be offered, what lines up, and often in that conversation,
the caregiver is never at the center, and so I often think about individuals who are caring
for their fourth family member with dementia.
(01:46):
They don't need dementia 101.
>> Right.
>> I probably need maybe some financial or some legal support or other types of counseling,
mental health support, often with care.
>> Or on the ground with additional caregivers to come in with them.
>> That's right.
That's right.
We have to ask for more family support.
If you're caring for someone who doesn't have a diagnosis yet, that doesn't make you any less
(02:11):
of a caregiver, but our system and our structure would say, well, you don't yet fit into a mold,
in a program because we don't have that diagnosis.
And there's nowhere else really when you think about medicine and health care, where the diagnosis
of one person leads to a different person's treatment or intervention.
(02:31):
But we do that with caregivers every day, outside of maternal and child health, where it makes
very logical sense.
But in family caregiving, we somehow have kind of taken away and ignored the fact that the
person who is a caregiver is experiencing, you know, they could be going through a transition
in their own life. They could be going through learning about a new diagnosis or, you know,
(02:55):
some conflicts between themselves and the person they're caring for.
Those are much more real tangible things to think about when understanding what a caregiver
might need than exclusively the clinical term.
>> Right. That makes a lot of sense.
It's interesting. I think a lot about how we try to divide people up into the patient
(03:19):
and the caregiver, whereas we're human beings, all of us, and the patient probably has some
strengths that we want to build on and take advantage of. And the caregiver probably does have
some needs and some limitations, they're human. And how do we see the whole person
in each case and see them as a diet as well that are very much interconnected?
(03:44):
Yeah. >> Yeah, I feel like it's the idea, like caregivers are humans too.
At the end of the day, and we have sometimes not seen that or not made that as visible.
And so this work is intended to do that and to help us move away from kind of this common phrase
(04:05):
of like if you've met one caregiver, you've met one caregiver. That kind of creates this, like,
oh, it's an impossible problem. Everybody has unique needs. We'll never be able to figure out
supports because every individual needs something different. I think there is individuality,
but I also think we can't let that be a reason for not trying to find paths to support caregivers.
(04:27):
>> Absolutely. Describe some of this work that went into creating caregiver profiles. And how are we
starting to create those distinctions that can help us steer different people to the right supports?
>> Yeah, so this work started out at actually ties to the Rosalind Carter Institute's 30+ years of
(04:48):
program delivery. We had been delivering programs for caregivers of those with mental illnesses,
caregivers of those with cancer, caregivers of veterans, dementia. We had been going down those
verticals. And as Mrs. Carter and I started talking four or five years ago, we said there's a lot more
in common in some of these experiences than there are differences. So how can we look at that
(05:14):
commonality? And to reflect on the fact that when she met a caregiver and told me about somebody she
met, when she'd come back and tell me, you know, this is what we need to do for this person,
she would never use that diagnosis as the descriptor of that person. She would say, this is a person
that needs this or could use this or has challenges here. So taking kind of that philosophical
(05:36):
approach and that 30 years of learning, we set out with Duke University a few years ago, they
started some work where they looked at over 10,000 research papers on interventions for caregivers,
caregiver support research. And look for common themes, common issues, and they brought together
(05:57):
a few different expert panels, mixing caregivers and non-caregivers, former caregivers altogether.
They did some panel groups of just caregivers currently in their role and tried to understand
what we're seeing in the literature of these themes and these kind of approaches are these issue
areas are these things that align up with you. What we came to is these 10 profiles. Each of them
(06:24):
are things that, you know, you could be in multiple profiles at once, right? You could be
caring for someone who's experiencing a new diagnosis, while also experiencing a transition, you know,
turning 65 or 26 and changing insurance, like all those things could be happening at once. But
but there's primarily one kind of driver of that caregiver experience in that moment,
(06:49):
recognizing we all go through many different changes over our caregiver journey. And within each
of these profiles, the Duke team looked at what would be the primary types of stress and types of
challenge in each of these spaces so that we could be more thoughtful in crafting interventions,
policy, and even employer benefits going forward. Yeah, fantastic. I think, you know, it's
(07:15):
simultaneously very true that we are all individuals and we all have unique needs and you point out,
you know, you might have two three family members that have different situations that you're caring for.
You might go through different periods of time where you're serving in different kinds of roles.
And at the same time, we can find those commonalities to start to talk about our particular needs.
(07:38):
There's been so many times in my experience that I needed words to say, "No, this is not just
motherhood. This is, you know, there's the term medical motherhood now. This is this is caregiving on a
very intensive basis. That's way different. And yes, I'm a mother and I'm a mothering, but I'm also
(07:58):
all these other things. And I think having that language and that structure really would be very
helpful. So I'm glad, you know, I think it's exciting that you're developing that.
I have to say of all the things I've presented over my time at the institute, when I put these 10
profiles up, the number of caregivers that come up to me and say that they finally feel seen
(08:20):
is, it's been a really compelling, like, validator that this was something that we needed to do.
And now I look forward to seeing how it can be used in other settings.
How can policymakers and business leaders use this to structure some supports?
(08:40):
Yes, the first thing I think about is if you're a policymaker at the federal, state, or even local
level thinking about either creating or making changes to some sort of caregiver support policy,
I would ask you to look at these 10 profiles and say, is this going to work for caregivers in
(09:01):
each of these 10 situations? If not, can I add a few words? Can I make a few changes such that it would
apply? Or do I need to think about, there's three profiles, but this doesn't work for, let's think
about what our next policy opportunity might be. In the employer space, I think about, you know,
employers are looking for things like different types of leave structures or different types of
(09:27):
different types of support benefits. And I think about a caregiver who's caring for someone with,
like a substance abuse challenge, right? They may not need six weeks of paid leave. They may need
very intermittent interspersed leave. If you look at profiles when you're describing and defining
(09:48):
how you're going to offer leave benefit or navigation benefit, look to make sure it's going to work
for each of those circumstances. You know, I think that this also presents an opportunity for
supervisors to at least have reflected on these 10 profiles so that when a caregiver comes into your
office or into your Zoom room and says, I'm caring for someone, you don't have to get into the details
(10:12):
of the diagnosis, the condition, the health information of someone, but you can say,
if you help me understand where you are and therefore I can think about what we can do to support you.
In that very real supervisor, supervisor, supervisor, that happens in workplaces across the country.
And I think that the opportunity exists for organizations like Area Agencies on Aging or local
(10:39):
senior and aging support services offices to think about how they could change and transform
that intake experience for a caregiver so that they are immediately kind of at the center of
the conversation. And I recognize that, you know, there are state forms that have to be filled out
and paperwork that has to be done. But how can you shape the conversation and start from a place of
(11:04):
understanding the caregiver and then getting to the mechanics of paperwork?
For ourselves, I think there's a place in that to be able to describe our own experience in a way that
other people can understand and I think having that almost a short hand where I've been in this
this profile or that one is helpful as well so that we can go into the conversation saying,
(11:32):
I'm caring for a family member who has an acute, you know, condition happening right now for
the next six weeks or I'm caring for a family member who is at the end of life or I'm caring for
I have been caring for the ongoing needs of a family member for X number of years and I
(11:59):
have mixed but also experienced a transition to services maybe. So I think about it for the caregiver
themselves, right, using this as a way to create conversation or to explain a situation as well as
for those of us who maybe are not currently in a caregiver role, you know, who instead of doing the
(12:24):
kind of like slow back away from the person that we often kind of see happening in society, right?
Where you say like, "Oh, you're caring for someone, I don't know what to do with that, I'm going to not
invite you any place or call you because I don't know what to say." I'm hopeful that this will be a tool
that if I could at least kind of say like, "Oh, I know what it's like to have to deal with some
(12:46):
a new problem that I don't know anything about," right? Like a new diagnosis, let me think like,
"Oh, you're probably drowning in information." Like I can understand that and empathize with that
outside of some of the caregiver elements. And so I'm hopeful that this can help us move away from
that backing away phenomenon that we see, that isolation that we see happening with caregivers.
(13:09):
Great, yeah. And I think that's very true and I think that the more you can describe this in ways
that somebody who's not intensively caregiving can relate, I think that is super helpful and I think
that's true. You can with this, these profiles, there's probably a lot more ways like that where
(13:30):
people can recognize their own experiences even if they're not exactly caregiving experience the same way.
Yeah, I think we need to do more of that because I think people, you know, they fear it from the outside
in some ways, but I think engaging people in kind of using some of their other muscles or saying like,
(13:51):
"What would be helpful if I was in a situation like that?" Right? Like kind of just trying to
put on your hat, a solution and engagement. We're going to take a break now. Please stay right here
and we'll be right back.
Thank you for sticking around. We continue our conversation.
I think do you have any further ideas or suggestions on language, a family caregiver can use in
(14:18):
their day-to-day life that it can express what we are experiencing at the same, fully, at the same time as
mitigate maybe that tendency for people to fear or develop that
ability for the other person to understand relate to their own experience?
(14:39):
I'll say this, I may be unbiased because I did in a caregiver space for this period of time,
but I think the onus is on people who are not caregiving right now, the change, the way that they engage
with caregivers, right? Like I always have it in the saddle, I want to say there's anything more
that a caregiver should be doing. It's the job of the environment around caregivers to change,
(15:00):
which is something that I'm all about. I love that, and maybe there's things we can do on it as well.
Yeah, yeah. So I think one of the things as we said about the profiles of
like, I'm going through a transition, like people have been through change and transition,
in job, in a move, in a change. You know that this just creates stress and turmoil and uncertainty.
(15:23):
You've experienced it at some point in your life, you know, right? And so for a caregiver,
going to a transition in their own life and the person that's caring for is like, right? Like
trying to navigate all that, those experiences, those challenges of choice and navigation and
everything not lining up the way it was supposed to or the way you envisioned it, your grand plan
(15:44):
that you made for yourself. I think those types of things, like it's not, I think a lot of times
people think we're going to, caregivers are going to immediately get to that place of like,
talking about like, really raw, very personal medical things, but yet like that emotional
(16:04):
difference, right? It's saying like, I'm going through a change right now with my caregiving.
Okay, I understand change. I think things might be getting slightly easier, but I don't want to be too
optimistic. We've all kind of gone through a version of that in our life, right? You don't want to,
don't want to jinx it, but yet like, you're like, maybe I'm getting closer to a place of stability
(16:27):
that I've dreamed of. You know, I think we can think about some of those elements
using those kind of profile terms that help us just kind of give that like, oh, I understand that
headspace. Like describe the experience we're having emotionally without getting into the medical
(16:53):
side of things so much or the, you know, oh, I cleaned up pooped hair or anything like that.
Yeah, yeah, yeah. Many people are scared, right? The person who's not the caregiver who hasn't been in
that space, right? To say like, I don't know what to ask because I don't really want to get into those
things. And I'm sure there's some caregivers who want to talk about all the details of that medical
(17:18):
experience. And then there are others who might just want to have like a non-caregiving conversation
for a little bit and just share a common like, shared humanity that we all have. Yeah. Yeah,
and these experiences are have so much in them that's like transferable to other experiences or
it could be relatable. I mean, that's true. I mean, that's true. The caregivers would be the best
(17:43):
employees. You should, you know, if you, I've ever thought about, thinking about looking for the
best people to bring on your team as an employer, caregivers are amazing logisticians,
schedulers, problem solvers, you know, coordinators of all types of things,
still are those out of every type of government form and insurance form. And so, yeah, I think that,
(18:09):
like, right, kind of recognizing all of those strengths is also important because I think
sometimes it gets shuffled into the, hmm, those are skills I had to do and yet like they are strengths
for other parts of life. Sure. And the more you do these things, the more you get better at it.
And whether it's because you had to or whether it's because you set out on some intentional path
(18:33):
that you wanted to develop those skills. Okay. Yeah. Yeah. And a lot of us, it's very true. We're very
good at organization and logistics and administration and all of that kind of stuff. What's coming next
for the caregiver profiles? Like what, what, where does it go from here? I think that there's
(18:55):
kind of three categories of opportunity. One is, we've been in conversations with some health systems.
I know this might sound surprising, but sometimes it turns out that clinicians are afraid to ask,
I'm gonna say, a caregiver because they don't know what to do if a person says yes to that question.
And so, it's a really disturbing thing for me to think about from the place that I think about
(19:23):
caregivers. Like the reason we're not having a conversation is because we don't have a solution.
And yet, like right, even having some conversations for a clinician to say like,
help me understand where you are and your caregiver experience, right? And to build that,
like from this profile ones, I think could be a powerful first step. You know, I think resources
(19:47):
and navigation is something that we continue to struggle with across the country in communities
large and small for caregivers. And yet, there's a chance for kind of thinking about what kind of
mental health services exist that could be applying and supportive in this. It aren't caregiver
tagged, but are broad in the community. So doing some of that where the clinician feels like they
(20:08):
have some ability to connect and refer. That's one. The second is working with some communities that
are working on their master, their state plans on aging or their community plans on aging,
thinking about how using the profiles helps caregivers and non-carriages alike think a bit more
(20:32):
about specific ideas because if you kind of have an open like, well, what can we do for caregivers,
conversations? And if I'm sure you've been in some of those, I have, it's kind of decided
to create a, there's a million suggestions. And so like this kind of construct helps to say,
like, well, these are a few things we could do for each of these types of caregivers. We could
(20:52):
think about in a way that is powerful for getting to some meaningful solutions. And then the third is
some work with a couple of small employers in Michigan. We've been working with for quite some time
now who will apply the profiles as they are planning their benefits and supports for the coming
year for their employees. And I think that is transformative in the sense of, right? Like, okay,
(21:18):
now you're going to actually use this in the tool. You're going to see what works, who you don't have
anything for and what you can do to support those individuals. So I think, you know, I'd love to
far too come back a year from now and tell you how those things are going because I think that those
will help us understand how we can move forward in, like, saying, trying away from the,
(21:40):
they're giving us so complicated how are we going to do anything for it? And also being recognizing,
we're not going to come up with one single federal solution that's going to work for all caregivers.
So yeah, so just kind of trying to apply this in a few different settings and see where it can
be most powerful. That's fantastic. And so, um, it really struck me the way you're saying, you know,
(22:10):
medical providers are afraid to ask people about being caregivers because they don't have
resources that I don't usually think about it from the medical provider's point of view.
Um, it could be daunting because then all of a sudden you, you've acknowledged a need that
somebody might have and maybe some pretty huge names without being able to
(22:33):
offer anything to help fill those needs. And that's, wow, you know, that, and coming back also to what
you said, it's on the non-carrier was to change to think about these things and, and I think also
to implement policies and programs and solutions. So, uh, so that those medical providers would have
(22:57):
some obvious referrals available and not even maybe even before the person got to the medical
provider, they would, there would be something in, in town that everybody just knows is, is where you
can go, you know, like, you've got a school age kid, you, you sign up at the school when you,
when you want a book, you go to the library, like, it's, it's there. It was part of the community.
(23:21):
Yeah, that would be amazing. Yeah, yeah, yeah, and uh, it's that, that building resources piece that
is, uh, really like so crucial. And I guess the, the point that I get optimistic and hopeful and excited
about the, the language and the structuring of our thoughts is only that, that, no, well, maybe it's
(23:45):
leading to this, you know, this point where we actually have some obvious services right there ready
to go, some obvious way to, to fill in some very real needs that people have.
Yeah, and I think part of it is, you know, what our, um, I mentioned kind of mental health
(24:09):
or counseling services, what are some of those things that are not, and have tagged as caregiver
supports that could be an, an opportunity, um, but I'd love to see, uh, I'd love to see a community
that was so caregiver friendly that it was obvious to you where to go and what was available.
Yeah, I mean, that's, that's my dream that I can like envision, you know, like, like, there's just a,
(24:32):
you know, the center for people, you know, the, the center for people with disabilities.
You know, we have these, these county offices and stuff, but they are, but, but where they would actually be
a place you walk in and you come out same day or at least the same week with like, yeah,
somebody's going to be in your home with you for the extra, uh, really, hours that you need.
(24:53):
Somebody's going to, you know, come teach you if it is a matter of learning some particular skill.
Somebody's going to, um, wrap things around you to free your time up for your drug caregiving.
Somebody's going to do your cleaning and lung care and whatever, you know, they can do that's,
yeah, that just takes stuff off your plate. Yeah. All right, that's where I'm hopeful that
(25:18):
all the thought we're put in, we put into caregiving is going to get to where nobody's doing
excessive caregiving, uh, way beyond 40 hours a week, unpaid, and therefore they can participate in
legislation, they can participate in business leadership and we can drive the cycle further
(25:38):
to create that world that that really serves all people. How, how does someone like me help
move things along? How, how do we help, um, non-caregivers use a tool like the caregiver profiles and
think about these things and talk about these things? I mean, I think the, the first thing is, um,
(26:03):
you know, we, we recently put the caregiver profiles on our website and we'll continue to put some
additional resources out. Um, but I think when somebody, uh, says to you, oh, caregiving, what does
that mean? Or, you know, they start there like, they're orienting themselves, um, who use the term,
because I know not everybody will use the term caregiver, but orient, the,
(26:26):
orient people using the profiles. I think that's an opportunity. I think when somebody says,
you know, we just don't know what to do to support caregivers with problems too big. Uh, that's
why I would say introduce the profiles. Um, and then I think that the opportunity exists for every,
um, current caregiver, uh, to engage in asking at the school board, at their local town council meeting,
(26:52):
um, what the community is doing for family caregivers. Um, I, I, I, I, I just, I, I, so,
remember format. Yeah. I so recognize that part of the reason that doesn't happen is because we're,
we're in it, you know, and we're just like trying to get through the day and get our loved one.
(27:12):
You know, their medication refill from the pharmacy and this doctor's appointment today and call
for the other three ones that need to happen soon and, uh, and then the literal physical right there,
whatever they need. Uh, so, that's why I would say former caregivers, um, a lot of former
(27:33):
caregivers are trying to get them to reengage in this work once their caregiver journey has come to
it. And, um, is something I, you know, I believe many caregivers are so full of heart, uh, that's what they
have poured out over their caregiver journey. You need some time to refill that energy, um, but I
would like to see the caregiver are part of, uh, former caregivers are part of leaving transform
(27:57):
no change. Yeah. Yeah. When and as you can, I like, I, I just, I never want anyone to feel like,
it's an advocacy is another piece that I have to feel guilty if I'm not fully engaged with or I
have to, you know, yeah, add to my plate, uh, you know, when and as that works for you. That's right. Yeah.
(28:19):
Um, thank you so much, Dr. Olson. And if, uh, is there anything we haven't covered that you'd want to add?
No, um, thank you. I love the name of the podcast. So, um, thank you for having me.
And this is Love Doesn't Pay the Bills. I will have links to more about caregiver, caregiver,
(28:40):
profiles and Dr. Olson, uh, in the show notes. Thank you so much for listening.
I'm Lisa Tschudi. This is Love Doesn't Pay the Bills, making family caregiving visible.
If you've enjoyed the show, please tell a friend.
[Music]
[MUSIC]
(00:11):
Welcome to Love Doesn't Pay the Bills.
I'm Lisa Tschudi.
Joining me today is Dr. Jennifer Olson.
Dr. Olson is an epidemiologist, and she's here today as the CEO of the Roslyn Carter Institute for Caregivers,
which she has been for the past six years, doing quite a lot to make life better for family caregivers,
(00:39):
essentially, and I'm so excited to start this conversation.
I wanted to talk about the caregiver profiles that the Roslyn Carter Institute has developed
along with, believe it's Duke University, is that right?
>> Yeah.
>> Yeah.
>> Yeah.
>> Welcome Dr. Olson.
>> Thank you.
>> Yes.
(00:59):
>> Thank you for having me.
>> Yeah.
Why is it important to develop these profiles and shift the attention from a patient's diagnosis
onto their caregiver?
Why does this matter?
>> I think for anyone listening who's ever been a caregiver, they'll have experienced,
at least at some point in that journey, being asked first about the diagnosis or the condition
(01:24):
or the age of the person that they're caring for, and then that leads to a whole series of
what's your eligible for, what could be offered, what lines up, and often in that conversation,
the caregiver is never at the center, and so I often think about individuals who are caring
for their fourth family member with dementia.
(01:46):
They don't need dementia 101.
>> Right.
>> I probably need maybe some financial or some legal support or other types of counseling,
mental health support, often with care.
>> Or on the ground with additional caregivers to come in with them.
>> That's right.
That's right.
We have to ask for more family support.
If you're caring for someone who doesn't have a diagnosis yet, that doesn't make you any less
(02:11):
of a caregiver, but our system and our structure would say, well, you don't yet fit into a mold,
in a program because we don't have that diagnosis.
And there's nowhere else really when you think about medicine and health care, where the diagnosis
of one person leads to a different person's treatment or intervention.
(02:31):
But we do that with caregivers every day, outside of maternal and child health, where it makes
very logical sense.
But in family caregiving, we somehow have kind of taken away and ignored the fact that the
person who is a caregiver is experiencing, you know, they could be going through a transition
in their own life. They could be going through learning about a new diagnosis or, you know,
(02:55):
some conflicts between themselves and the person they're caring for.
Those are much more real tangible things to think about when understanding what a caregiver
might need than exclusively the clinical term.
>> Right. That makes a lot of sense.
It's interesting. I think a lot about how we try to divide people up into the patient
(03:19):
and the caregiver, whereas we're human beings, all of us, and the patient probably has some
strengths that we want to build on and take advantage of. And the caregiver probably does have
some needs and some limitations, they're human. And how do we see the whole person
in each case and see them as a diet as well that are very much interconnected?
(03:44):
Yeah. >> Yeah, I feel like it's the idea, like caregivers are humans too.
At the end of the day, and we have sometimes not seen that or not made that as visible.
And so this work is intended to do that and to help us move away from kind of this common phrase
(04:05):
of like if you've met one caregiver, you've met one caregiver. That kind of creates this, like,
oh, it's an impossible problem. Everybody has unique needs. We'll never be able to figure out
supports because every individual needs something different. I think there is individuality,
but I also think we can't let that be a reason for not trying to find paths to support caregivers.
(04:27):
>> Absolutely. Describe some of this work that went into creating caregiver profiles. And how are we
starting to create those distinctions that can help us steer different people to the right supports?
>> Yeah, so this work started out at actually ties to the Rosalind Carter Institute's 30+ years of
(04:48):
program delivery. We had been delivering programs for caregivers of those with mental illnesses,
caregivers of those with cancer, caregivers of veterans, dementia. We had been going down those
verticals. And as Mrs. Carter and I started talking four or five years ago, we said there's a lot more
in common in some of these experiences than there are differences. So how can we look at that
(05:14):
commonality? And to reflect on the fact that when she met a caregiver and told me about somebody she
met, when she'd come back and tell me, you know, this is what we need to do for this person,
she would never use that diagnosis as the descriptor of that person. She would say, this is a person
that needs this or could use this or has challenges here. So taking kind of that philosophical
(05:36):
approach and that 30 years of learning, we set out with Duke University a few years ago, they
started some work where they looked at over 10,000 research papers on interventions for caregivers,
caregiver support research. And look for common themes, common issues, and they brought together
(05:57):
a few different expert panels, mixing caregivers and non-caregivers, former caregivers altogether.
They did some panel groups of just caregivers currently in their role and tried to understand
what we're seeing in the literature of these themes and these kind of approaches are these issue
areas are these things that align up with you. What we came to is these 10 profiles. Each of them
(06:24):
are things that, you know, you could be in multiple profiles at once, right? You could be
caring for someone who's experiencing a new diagnosis, while also experiencing a transition, you know,
turning 65 or 26 and changing insurance, like all those things could be happening at once. But
but there's primarily one kind of driver of that caregiver experience in that moment,
(06:49):
recognizing we all go through many different changes over our caregiver journey. And within each
of these profiles, the Duke team looked at what would be the primary types of stress and types of
challenge in each of these spaces so that we could be more thoughtful in crafting interventions,
policy, and even employer benefits going forward. Yeah, fantastic. I think, you know, it's
(07:15):
simultaneously very true that we are all individuals and we all have unique needs and you point out,
you know, you might have two three family members that have different situations that you're caring for.
You might go through different periods of time where you're serving in different kinds of roles.
And at the same time, we can find those commonalities to start to talk about our particular needs.
(07:38):
There's been so many times in my experience that I needed words to say, "No, this is not just
motherhood. This is, you know, there's the term medical motherhood now. This is this is caregiving on a
very intensive basis. That's way different. And yes, I'm a mother and I'm a mothering, but I'm also
(07:58):
all these other things. And I think having that language and that structure really would be very
helpful. So I'm glad, you know, I think it's exciting that you're developing that.
I have to say of all the things I've presented over my time at the institute, when I put these 10
profiles up, the number of caregivers that come up to me and say that they finally feel seen
(08:20):
is, it's been a really compelling, like, validator that this was something that we needed to do.
And now I look forward to seeing how it can be used in other settings.
How can policymakers and business leaders use this to structure some supports?
(08:40):
Yes, the first thing I think about is if you're a policymaker at the federal, state, or even local
level thinking about either creating or making changes to some sort of caregiver support policy,
I would ask you to look at these 10 profiles and say, is this going to work for caregivers in
(09:01):
each of these 10 situations? If not, can I add a few words? Can I make a few changes such that it would
apply? Or do I need to think about, there's three profiles, but this doesn't work for, let's think
about what our next policy opportunity might be. In the employer space, I think about, you know,
employers are looking for things like different types of leave structures or different types of
(09:27):
different types of support benefits. And I think about a caregiver who's caring for someone with,
like a substance abuse challenge, right? They may not need six weeks of paid leave. They may need
very intermittent interspersed leave. If you look at profiles when you're describing and defining
(09:48):
how you're going to offer leave benefit or navigation benefit, look to make sure it's going to work
for each of those circumstances. You know, I think that this also presents an opportunity for
supervisors to at least have reflected on these 10 profiles so that when a caregiver comes into your
office or into your Zoom room and says, I'm caring for someone, you don't have to get into the details
(10:12):
of the diagnosis, the condition, the health information of someone, but you can say,
if you help me understand where you are and therefore I can think about what we can do to support you.
In that very real supervisor, supervisor, supervisor, that happens in workplaces across the country.
And I think that the opportunity exists for organizations like Area Agencies on Aging or local
(10:39):
senior and aging support services offices to think about how they could change and transform
that intake experience for a caregiver so that they are immediately kind of at the center of
the conversation. And I recognize that, you know, there are state forms that have to be filled out
and paperwork that has to be done. But how can you shape the conversation and start from a place of
(11:04):
understanding the caregiver and then getting to the mechanics of paperwork?
For ourselves, I think there's a place in that to be able to describe our own experience in a way that
other people can understand and I think having that almost a short hand where I've been in this
this profile or that one is helpful as well so that we can go into the conversation saying,
(11:32):
I'm caring for a family member who has an acute, you know, condition happening right now for
the next six weeks or I'm caring for a family member who is at the end of life or I'm caring for
I have been caring for the ongoing needs of a family member for X number of years and I
(11:59):
have mixed but also experienced a transition to services maybe. So I think about it for the caregiver
themselves, right, using this as a way to create conversation or to explain a situation as well as
for those of us who maybe are not currently in a caregiver role, you know, who instead of doing the
(12:24):
kind of like slow back away from the person that we often kind of see happening in society, right?
Where you say like, "Oh, you're caring for someone, I don't know what to do with that, I'm going to not
invite you any place or call you because I don't know what to say." I'm hopeful that this will be a tool
that if I could at least kind of say like, "Oh, I know what it's like to have to deal with some
(12:46):
a new problem that I don't know anything about," right? Like a new diagnosis, let me think like,
"Oh, you're probably drowning in information." Like I can understand that and empathize with that
outside of some of the caregiver elements. And so I'm hopeful that this can help us move away from
that backing away phenomenon that we see, that isolation that we see happening with caregivers.
(13:09):
Great, yeah. And I think that's very true and I think that the more you can describe this in ways
that somebody who's not intensively caregiving can relate, I think that is super helpful and I think
that's true. You can with this, these profiles, there's probably a lot more ways like that where
(13:30):
people can recognize their own experiences even if they're not exactly caregiving experience the same way.
Yeah, I think we need to do more of that because I think people, you know, they fear it from the outside
in some ways, but I think engaging people in kind of using some of their other muscles or saying like,
(13:51):
"What would be helpful if I was in a situation like that?" Right? Like kind of just trying to
put on your hat, a solution and engagement. We're going to take a break now. Please stay right here
and we'll be right back.
Thank you for sticking around. We continue our conversation.
I think do you have any further ideas or suggestions on language, a family caregiver can use in
(14:18):
their day-to-day life that it can express what we are experiencing at the same, fully, at the same time as
mitigate maybe that tendency for people to fear or develop that
ability for the other person to understand relate to their own experience?
(14:39):
I'll say this, I may be unbiased because I did in a caregiver space for this period of time,
but I think the onus is on people who are not caregiving right now, the change, the way that they engage
with caregivers, right? Like I always have it in the saddle, I want to say there's anything more
that a caregiver should be doing. It's the job of the environment around caregivers to change,
(15:00):
which is something that I'm all about. I love that, and maybe there's things we can do on it as well.
Yeah, yeah. So I think one of the things as we said about the profiles of
like, I'm going through a transition, like people have been through change and transition,
in job, in a move, in a change. You know that this just creates stress and turmoil and uncertainty.
(15:23):
You've experienced it at some point in your life, you know, right? And so for a caregiver,
going to a transition in their own life and the person that's caring for is like, right? Like
trying to navigate all that, those experiences, those challenges of choice and navigation and
everything not lining up the way it was supposed to or the way you envisioned it, your grand plan
(15:44):
that you made for yourself. I think those types of things, like it's not, I think a lot of times
people think we're going to, caregivers are going to immediately get to that place of like,
talking about like, really raw, very personal medical things, but yet like that emotional
(16:04):
difference, right? It's saying like, I'm going through a change right now with my caregiving.
Okay, I understand change. I think things might be getting slightly easier, but I don't want to be too
optimistic. We've all kind of gone through a version of that in our life, right? You don't want to,
don't want to jinx it, but yet like, you're like, maybe I'm getting closer to a place of stability
(16:27):
that I've dreamed of. You know, I think we can think about some of those elements
using those kind of profile terms that help us just kind of give that like, oh, I understand that
headspace. Like describe the experience we're having emotionally without getting into the medical
(16:53):
side of things so much or the, you know, oh, I cleaned up pooped hair or anything like that.
Yeah, yeah, yeah. Many people are scared, right? The person who's not the caregiver who hasn't been in
that space, right? To say like, I don't know what to ask because I don't really want to get into those
things. And I'm sure there's some caregivers who want to talk about all the details of that medical
(17:18):
experience. And then there are others who might just want to have like a non-caregiving conversation
for a little bit and just share a common like, shared humanity that we all have. Yeah. Yeah,
and these experiences are have so much in them that's like transferable to other experiences or
it could be relatable. I mean, that's true. I mean, that's true. The caregivers would be the best
(17:43):
employees. You should, you know, if you, I've ever thought about, thinking about looking for the
best people to bring on your team as an employer, caregivers are amazing logisticians,
schedulers, problem solvers, you know, coordinators of all types of things,
still are those out of every type of government form and insurance form. And so, yeah, I think that,
(18:09):
like, right, kind of recognizing all of those strengths is also important because I think
sometimes it gets shuffled into the, hmm, those are skills I had to do and yet like they are strengths
for other parts of life. Sure. And the more you do these things, the more you get better at it.
And whether it's because you had to or whether it's because you set out on some intentional path
(18:33):
that you wanted to develop those skills. Okay. Yeah. Yeah. And a lot of us, it's very true. We're very
good at organization and logistics and administration and all of that kind of stuff. What's coming next
for the caregiver profiles? Like what, what, where does it go from here? I think that there's
(18:55):
kind of three categories of opportunity. One is, we've been in conversations with some health systems.
I know this might sound surprising, but sometimes it turns out that clinicians are afraid to ask,
I'm gonna say, a caregiver because they don't know what to do if a person says yes to that question.
And so, it's a really disturbing thing for me to think about from the place that I think about
(19:23):
caregivers. Like the reason we're not having a conversation is because we don't have a solution.
And yet, like right, even having some conversations for a clinician to say like,
help me understand where you are and your caregiver experience, right? And to build that,
like from this profile ones, I think could be a powerful first step. You know, I think resources
(19:47):
and navigation is something that we continue to struggle with across the country in communities
large and small for caregivers. And yet, there's a chance for kind of thinking about what kind of
mental health services exist that could be applying and supportive in this. It aren't caregiver
tagged, but are broad in the community. So doing some of that where the clinician feels like they
(20:08):
have some ability to connect and refer. That's one. The second is working with some communities that
are working on their master, their state plans on aging or their community plans on aging,
thinking about how using the profiles helps caregivers and non-carriages alike think a bit more
(20:32):
about specific ideas because if you kind of have an open like, well, what can we do for caregivers,
conversations? And if I'm sure you've been in some of those, I have, it's kind of decided
to create a, there's a million suggestions. And so like this kind of construct helps to say,
like, well, these are a few things we could do for each of these types of caregivers. We could
(20:52):
think about in a way that is powerful for getting to some meaningful solutions. And then the third is
some work with a couple of small employers in Michigan. We've been working with for quite some time
now who will apply the profiles as they are planning their benefits and supports for the coming
year for their employees. And I think that is transformative in the sense of, right? Like, okay,
(21:18):
now you're going to actually use this in the tool. You're going to see what works, who you don't have
anything for and what you can do to support those individuals. So I think, you know, I'd love to
far too come back a year from now and tell you how those things are going because I think that those
will help us understand how we can move forward in, like, saying, trying away from the,
(21:40):
they're giving us so complicated how are we going to do anything for it? And also being recognizing,
we're not going to come up with one single federal solution that's going to work for all caregivers.
So yeah, so just kind of trying to apply this in a few different settings and see where it can
be most powerful. That's fantastic. And so, um, it really struck me the way you're saying, you know,
(22:10):
medical providers are afraid to ask people about being caregivers because they don't have
resources that I don't usually think about it from the medical provider's point of view.
Um, it could be daunting because then all of a sudden you, you've acknowledged a need that
somebody might have and maybe some pretty huge names without being able to
(22:33):
offer anything to help fill those needs. And that's, wow, you know, that, and coming back also to what
you said, it's on the non-carrier was to change to think about these things and, and I think also
to implement policies and programs and solutions. So, uh, so that those medical providers would have
(22:57):
some obvious referrals available and not even maybe even before the person got to the medical
provider, they would, there would be something in, in town that everybody just knows is, is where you
can go, you know, like, you've got a school age kid, you, you sign up at the school when you,
when you want a book, you go to the library, like, it's, it's there. It was part of the community.
(23:21):
Yeah, that would be amazing. Yeah, yeah, yeah, and uh, it's that, that building resources piece that
is, uh, really like so crucial. And I guess the, the point that I get optimistic and hopeful and excited
about the, the language and the structuring of our thoughts is only that, that, no, well, maybe it's
(23:45):
leading to this, you know, this point where we actually have some obvious services right there ready
to go, some obvious way to, to fill in some very real needs that people have.
Yeah, and I think part of it is, you know, what our, um, I mentioned kind of mental health
(24:09):
or counseling services, what are some of those things that are not, and have tagged as caregiver
supports that could be an, an opportunity, um, but I'd love to see, uh, I'd love to see a community
that was so caregiver friendly that it was obvious to you where to go and what was available.
Yeah, I mean, that's, that's my dream that I can like envision, you know, like, like, there's just a,
(24:32):
you know, the center for people, you know, the, the center for people with disabilities.
You know, we have these, these county offices and stuff, but they are, but, but where they would actually be
a place you walk in and you come out same day or at least the same week with like, yeah,
somebody's going to be in your home with you for the extra, uh, really, hours that you need.
(24:53):
Somebody's going to, you know, come teach you if it is a matter of learning some particular skill.
Somebody's going to, um, wrap things around you to free your time up for your drug caregiving.
Somebody's going to do your cleaning and lung care and whatever, you know, they can do that's,
yeah, that just takes stuff off your plate. Yeah. All right, that's where I'm hopeful that
(25:18):
all the thought we're put in, we put into caregiving is going to get to where nobody's doing
excessive caregiving, uh, way beyond 40 hours a week, unpaid, and therefore they can participate in
legislation, they can participate in business leadership and we can drive the cycle further
(25:38):
to create that world that that really serves all people. How, how does someone like me help
move things along? How, how do we help, um, non-caregivers use a tool like the caregiver profiles and
think about these things and talk about these things? I mean, I think the, the first thing is, um,
(26:03):
you know, we, we recently put the caregiver profiles on our website and we'll continue to put some
additional resources out. Um, but I think when somebody, uh, says to you, oh, caregiving, what does
that mean? Or, you know, they start there like, they're orienting themselves, um, who use the term,
because I know not everybody will use the term caregiver, but orient, the,
(26:26):
orient people using the profiles. I think that's an opportunity. I think when somebody says,
you know, we just don't know what to do to support caregivers with problems too big. Uh, that's
why I would say introduce the profiles. Um, and then I think that the opportunity exists for every,
um, current caregiver, uh, to engage in asking at the school board, at their local town council meeting,
(26:52):
um, what the community is doing for family caregivers. Um, I, I, I, I, I just, I, I, so,
remember format. Yeah. I so recognize that part of the reason that doesn't happen is because we're,
we're in it, you know, and we're just like trying to get through the day and get our loved one.
(27:12):
You know, their medication refill from the pharmacy and this doctor's appointment today and call
for the other three ones that need to happen soon and, uh, and then the literal physical right there,
whatever they need. Uh, so, that's why I would say former caregivers, um, a lot of former
(27:33):
caregivers are trying to get them to reengage in this work once their caregiver journey has come to
it. And, um, is something I, you know, I believe many caregivers are so full of heart, uh, that's what they
have poured out over their caregiver journey. You need some time to refill that energy, um, but I
would like to see the caregiver are part of, uh, former caregivers are part of leaving transform
(27:57):
no change. Yeah. Yeah. When and as you can, I like, I, I just, I never want anyone to feel like,
it's an advocacy is another piece that I have to feel guilty if I'm not fully engaged with or I
have to, you know, yeah, add to my plate, uh, you know, when and as that works for you. That's right. Yeah.
(28:19):
Um, thank you so much, Dr. Olson. And if, uh, is there anything we haven't covered that you'd want to add?
No, um, thank you. I love the name of the podcast. So, um, thank you for having me.
And this is Love Doesn't Pay the Bills. I will have links to more about caregiver, caregiver,
(28:40):
profiles and Dr. Olson, uh, in the show notes. Thank you so much for listening.
I'm Lisa Tschudi. This is Love Doesn't Pay the Bills, making family caregiving visible.
If you've enjoyed the show, please tell a friend.
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