- Welcome, everyone, to Wednesday Nite @ the Lab .
I'm Tom Zinnen.
I work here at UW-Madison Biotechnology Center.
I also work for UW-Extension, Cooperative Extension.
And on behalf of those folks,
and our other co-organizers, Wisconsin Public Television,
Wisconsin Alumni Association,
and the UW-Madison Science Alliance,
thanks again for coming to Wednesday Nite @ the Lab .
We do this every Wednesday night, 50 times a year.
Tonight it's my pleasure to introduce
to you Kristin Litzelman, she's a professor
in the School of Human Ecology,
and she's also a state specialist in
the Family Living Program
in UW-Extension, Cooperative Extension.
She was born in Green Bay.
She graduated from Preble High School.
Then she went to the University of Illinois in Champaign Urbana
to study French.
And I will spare you my incredibly fluent French.
(laughs)
Then she came here with that French degree
and got a PhD in population health sciences.
Which is no easy thing to do.
Then she, in 2013, went to the National Cancer Institute
for a post doc in Rockville, Maryland.
In November of 2015 she came back here to UW Madison,
so I'm delighted to have her here,
she's going to be talking about something close
to my experience, from six years ago
when my dad got sick,
she's going to be talking about,
"Who Cares? Well-being in Sickness and in Health."
Please join me in welcoming Kristin Litzelman
to Wednesday Nite @ the Lab .
(applause)
- So I just want to start with a quick poll,
if you're comfortable, please go and actually raise
your hand, if not, just go ahead and think about it,
you know, raise your hand mentally.
I want to know who here helps care for someone
who is ill or disabled in some way.
Could be anyone.
Raise your hand, mentally or not... Up to you.
Now keep your hands up in the air, if you don't mind.
We will work your arms out a little bit.
And now raise your hand if you've done that in the past,
if you've taken care of anyone in the past.
Who thinks they might play that role in the future?
Okay, so thank you all for playing along so well.
Pretty much all of you in the end had your hands in the air,
and there's a good reason for that.
Family caregiving is a very prevalent
and very common role that people play in their lives,
it's also very impactful.
So today what I'm going to be telling you about is,
family caregiving.
This is Rosalynn Carter.
She is our former first lady.
And she has been really instrumental
in supporting caregivers, but family caregivers
and more formal caregivers like doctors
and nurses and home health aides
and other people who provide care as their role.
And she has been quoted as saying that there
are only four types of people in the world.
Those who are currently caregivers,
those who have been caregivers,
those who will become caregivers,
and those who will need caregivers.
It really covers pretty much everyone.
And we saw that, when you worked with my poll there.
So thank you for that.
So what I'm going to be telling you about today
is what caregiving is, but you already know,
but also why it's important.
And what it looks like, specifically in Wisconsin.
What we look like as caregivers here.
And then I'm going to switch gears a little bit
and tell you specifically about some research that I have done,
looking at family caregivers
and specifically, spouses of cancer survivors.
Not just looking at how caregivers
are impacted by their role,
but how they also can impact the person
that they care for.
And then at the end, I just want
to plant a seed, and spend some time,
not just talking about implications,
but also planting that seed of what
to do if you are a caregiver,
or if you will become a caregiver,
to help make the best outcomes from caregiving.
Rather than have caregivers suffer
detrimental outcomes that they sometimes do.
So there are a lot of definitions
of what informal caregiving is
and when I say informal caregiving,
that's simply to differentiate from formal caregivers,
doctors, nurses, home health aides,
and other types of clinicians.
Informal caregivers are typically people
who are providing unpaid care to a family member
or friend with an illness or disability.
Now as I said, there are lots of definitions.
But they all have these same elements.
It's someone who's caring for someone
that they love, and they're doing it out
of the goodness of their heart.
They're not getting any sort of paid compensation for it.
It's also exceptionally common.
In Wisconsin, 17.2 percent of people report
being caregivers in the past 12 months.
And of course when you look at who has been caregivers
over time, that's much bigger.
Because caregivers tend to go in and out of their role.
They start as caregivers and then they transition
out of a caregiving role,
and they may transition back in,
caring either for the same person
or for someone else.
This is very similar to the national average,
which is around 18 percent.
And it really is speaking to how common
this is, how big of a role this plays.
So we seek caregivers from a lot of different levels, there's
not any just one specific type of family caregiver.
Right here I have a picture of someone who
may be caring for an older parent,
that's typically what we tend to think about that,
or someone who's caring for their spouse.
Those are who we think of as caregivers.
People who are providing care
for someone who is aging.
But that's not the only picture that we see.
Also might be a family member's caring
for a child who has an illness or a disability.
This child might be a minor or it could be
someone who has transitioned into adulthood
but still has a lot of needs.
Or it could be a younger couple,
a spouse caring for a younger spouse,
it could be someone caring for a friend,
it could be someone caring for a neighbor.
There's a lot of variations on this.
And so when we think of caregivers
we tend to think of one particular picture
in our mind, but it's actually much broader than that.
So in Wisconsin, what does caregiving look like?
The average caregiver is 52 years old,
to me this is striking.
I think of caregivers as being older.
But in Wisconsin, the average age is 52.
65 percent are female.
You're probably not surprised about that.
Caregivers are much more likely to be female than male.
74 percent are married or partnered.
That's actually right on par with the general population,
so that's not unexpected.
65 percent are employed.
And that could be any type of employment
outside the home, full time or part time,
but this is lower than what we see
in couples who aren't taking part,
or in families who aren't taking part
in caregiving responsibilities.
On average, caregivers provide 17 hours
of care per week.
That range is huge.
Some people report providing less than one hour
of care per week, some people provide essentially,
full time care.
24 hours a day, 7 days a week.
On average we come out to 17 hours,
that's a lot, that's a part time job
for a lot of people.
And they've been caring
for about four and a half years, on average.
Again, the range is huge.
Some people have been caregiving for less time,
some have been for much more.
Most people are caring for a parent,
which is what I think of when I think of a caregiver.
I think of someone caring for a parent,
but there's a huge range.
But 15 percent are caring for a spouse
and about 13 percent are caring for a child,
and then that last chunk is people caring for someone else,
an aunt, an uncle, a friend, a sibling.
33 percent live with the person
that they're providing care to.
The rest of the people outside of that 33 percent
are either a short distance away,
or some people are a very long distance away.
And are providing long distance care,
which has challenges of its own.
So this just illustrates what the typical caregiver
looks like, but I'm emphasizing here the variability.
When we have the average age of 52,
some caregivers are 18 years old.
Some are 85.
And there is all the range in between.
Some caregivers are actually still minors.
There are children who provide care
for their family, they're not counted here.
This only counts adults in Wisconsin.
Family caregiving is also growing.
As the population ages, there are more people
who will need care, inevitably.
We also have had medical advances
that allow people with disabilities
to live longer and to survive and be healthy
for longer periods of time but they still
may need assistance from family members
or friends or from the medical community.
So this is just to illustrate.
These are population pyramids from 1990
all the way up to 2050, and we have men
on the left and women on the right.
And what I'm really trying to illustrate here,
I'm zoomed way out.
Because it's not the details we're worried about,
it's this, this little blurb right here.
That's the baby boomers.
And the baby boomers, as we can see,
have changed how the population is structured
going forward.
So that when we get to 2050, we end up
with a projection of 88 and a half million adults
being over the age of 65 in the United States,
and over 19 million being greater
than 85 years of age.
So we have this huge burst in the older population,
and that pushes our care needs up.
I also want to illustrate, we call this
the age wave, a lot of the time.
I want to illustrate the age wave in Wisconsin as well.
So when we look at Wisconsin counties,
this is from the 2010 Census,
and what we're seeing here is the population
that is aged 65 and older.
What proportion of the population
is 65 and over?
And as you can see there's only two counties
up there in the corner that are even in the 25
to 30 percent age 65 and older populations.
So darker colors mean a larger proportion
of the population is aging.
When we extrapolate that out to 2040,
the map looks like this.
Much, much darker.
And at that point, over two thirds of Wisconsin counties,
by 2040, are projected to have 25 percent
or more of their population being 65 and older.
Two thirds of Wisconsin counties over 65.
And a third of those counties will actually have
a population older than 65 that's greater than
30 percent of the total population.
So this is going to be really impactful for counties.
Because as people age, they need more services,
we really want to have aging friendly communities
where we can support people to stay
in their communities and stay in their homes.
And that also means we need services
for the caregivers who are going to be helping them out.
There's going to be a larger need
and there's going to be a smaller population
of possible caregivers.
Family caregiving is also impactful.
This is on a lot of levels.
There's the emotional side that we often think of,
when we think of how caregivers are reacted,
it's stressful.
It can be really, really emotionally hard
to be a caregiver and be providing services
to the people that you're caring for.
And when I talk about what caregivers do,
there's a huge range.
It's not any one thing.
They often provide help moving people
from one place to another, helping them
from the bed to the couch, they might be
just doing things like getting groceries,
or cooking for someone, they might be providing
financial support.
They might be helping to pay the rent, or the heat bill,
or the medical bills.
They might be providing emotional support.
And a lot of caregivers actually provide
fairly complex medical care.
They are monitoring symptoms,
they are doing blood glucose checking.
Depending on what they're caring for
they might be providing injections,
they do things that 20 years ago,
30 years ago, would've happened in a medical setting.
There's benefits of that, right?
This means that if someone is in the hospital,
they get to come home sooner.
Because they have someone who is able
to provide that care, the flip side is that
it can be very stressful and very hard
for the person who's providing care
because sometimes they're doing
very complex medical tasks.
And they don't always feel like they
have the support to do that.
So this can be impactful on an emotional level,
but it can also be impactful on a physical level,
on a financial level.
Before I get into the details,
I want to be really clear here.
It's not all negative.
There are a lot of very positive things about caregiving.
And when we talk about the negative impacts
of caregiving, that's the thing that gets
a lot of attention, that's not the full story.
There's lots of hyperbole about, "Oh, it's terrible."
It's not always terrible.
I'll get into the details on that later.
But the truth is, there's bad things
and there's good things.
And there are people who have more strengths
in some areas than others, and therefore,
feel more comfortable
in the caregiving world than others.
So when we ask people,
"How does caregiving impact you?"
When we ask them about the physical aspect,
19 percent say that caregiving is a strain for them.
Either very much or somewhat of a strain.
And that's just their perception.
So that could be the people who
are physical picking, helping people
from the bed to the couch.
Or helping them to bathe, or helping them to shower.
Where they're physically using their bodies,
but it could also be people who just aren't
getting enough sleep, because the people who
they are caring for is awake a lot.
We ask them about their emotional stress.
And we see that there's a large proportion,
over a quarter of people, who report that they
have high emotional stress from their role.
And financial strain is also really prevalent.
18 percent say that they have financial strain
from their role.
It's actually, I think, 22 percent?
Yeah, 22 percent report that caregiving
actually made their health worse.
There's also a chunk of people who report
that caregiving made their health better.
So it comes on both sides.
But we do see that this can be hugely impactful
for how people perceive their health and their well-being.
So then aside from those subjective measures
of how people do, we also know that objectively,
we can measure on a physiological basis
that some people are strongly impacted by their role.
On a physical level, there's been some research
in dementia caregivers specifically,
looking at how their immune system reacts
to being caregivers.
And they found that caregivers
have worse immune functioning, they have immune dysfunction.
Which means that they are more likely to get colds,
if they get a flu shot, it's possible that
their immune system won't rev up enough
to absorb, to make that flu shot effective.
And so they face these sort of, short term,
small, every day issues.
But then they also face bigger issues.
We know that family caregivers are more likely
to get treated for physical impairments.
Things like heart disease.
So we see this on both levels.
Both over the short term and also over the long term.
On an emotional level, caregivers are more likely
to experience distress.
This is something that we see in a lot of caregivers.
What we typically see is that there's a spike in distress
right after caregiving starts,
they're adjusting, it's new, it can be scary,
maybe if someone's coming home from the hospital,
but humans are infinitely adaptable.
And so what we typically see is that there
is a spike in distress and then
it comes back down slowly over time.
To a level that is either right on par with
what people typically experience,
who aren't caregivers, or a little bit higher.
But there's a subset of people
who don't have that decline over time.
There's a subset who continue to have elevated distress.
And those are the people we worry about as caregivers.
Caregivers are also more likely
to experience clinically significant anxiety
and depression, so actually clinical diagnosis
of anxiety and depression.
One study found that they were 60 percent
more likely to experience depression.
Compared to non-caregivers.
And there's a lot of financial impacts.
And these are things that don't always get consideration.
Although this has been in the news recently,
so you may have seen some information about
that financial impacts of caregiving.
Out of pocket costs are huge.
On average, depending on the study that you look at,
caregivers spend somewhere between five thousand
and twelve thousand dollars a year out of pocket.
That's a lot. And that's on average.
So some people are spending much more
and some people are spending less.
That comes out, the five thousand dollar figure,
comes out to around 10 percent of the average income,
so that can be seriously burdensome
for these family caregivers.
Caregivers often also experience employment changes,
these run the gamut.
It could be that they are using flex time at work,
they're coming in early and leaving early,
it could be that they take a different job
because the job that they have doesn't allow
them to provide the care they need.
They may retire early or quit their job altogether.
They may turn down a promotion
so that they are working in a job that
is more conducive to caregiving,
but that isn't pushing them up the career ladder
in the way that they might like.
And so that can have reverberations
on their long term financial stability,
because an interruption in their career
or changing the jobs that they take
because of caregiving can impact
their income lifelong, their career trajectory lifelong,
and it can be something that can be potentially hard
for them to recover from.
There's also issues with retirement.
Some people retire early because they need
that time to provide their care.
Some people retire late because they need
the health insurance or for other reasons related
to their job.
There are people who raid their 401K
and take their money out of their retirement accounts
in order to afford the caregiving that they're doing.
And so that impacts late life financial security.
Something that can be very impactful,
not only for individuals but for communities as a whole.
So I want to be really clear as I said before,
that there's not only one type of caregiver,
and there's not only one type of response
to family caregiving.
Really, it's not just the caregiving
that's causing problems for caregivers,
or that's causing benefits for caregivers,
it is the stress that they're experiencing.
It's how their perceiving their role.
So you could have two types of caregivers
who provide the exact same type of care,
who are facing the exact same circumstances,
and one person will be very stressed out by that role,
and the other person won't,
they will have very different outcomes.
Sometimes it is the caregiving.
If someone is experiencing back problems,
that could be directly related to caregiving, right?
Because if they are helping move someone around,
that could influence their back problems.
It could be sleep issues,
it can also be directly related to caregiving.
But there's a lot of indirect impacts
that run through stress.
And so I just want to illustrate that real quickly here.
So what we're looking at,
on the Y axis here, we're looking
at health related quality of life,
and this is the difference between caregivers
and non-caregivers.
We're looking at caregivers with low strain,
I'll use the mouse here.
Who report low strain, so they report that they
have low caregiving related stress,
a middle amount, and a high level of stress,
and we're looking at how they're doing
with the mental health related quality of life,
and how they're doing with the physical quality of life.
So positive numbers here indicate
that they're doing better than non-caregivers,
and negative numbers indicate
that they're doing worse than non-caregivers.
And what we end up seeing
is that when people report, when caregivers report
low levels of strain, they actually
have better quality of life than non-caregivers.
They're doing better.
When we get to the middle levels, we start to see
that they're doing a little bit worse,
and then when we talk about high strain caregivers,
we see that they have much worse quality of life
than non-caregivers.
So it's not just that they're caregiving,
it's that they're caregiving and they find it stressful.
That they're perceiving that this is impacting them.
And when we look at the physical related health quality
of life, we see something similar.
Low strain caregivers have slightly better,
just a little bit,
physical health related quality of life,
but high strain caregivers
have much worse health related quality of life.
So again, it's not the caregiving necessarily,
it's to some degree the strain
that some people are experiencing from their role.
So as I was saying about it being a positive experience
as well, it's not all bad.
There are some caregivers who experience physical impacts.
There are some caregivers who experience emotional impacts,
depression or anxiety.
Almost all caregivers report positive impacts.
83 percent report that caregiving overall
is a positive experience.
Almost all caregivers can identify
at least one perceived benefit.
This could be things like having
a better relationship with the person they're caring for,
feeling like they have a purpose in life,
really embracing that,
feeling like they had personal growth,
some people really benefit
from their caregiving role and turn it into
a career later, where they've had this practice
doing these medical tasks, doing these caring tasks,
giving the emotional support.
And they eventually translate that into
a career once their caregiving role is done
or in addition to their informal caregiving role.
There's also some evidence that caregivers
may live longer than non-caregivers.
Now years ago, there was an initial study
that came out looking at caregiver mortality,
finding that caregivers had higher mortality
than non-caregivers.
And everyone kind of freaked out, it was a big deal.
And then of course people try to replicate that.
They look at these big population based studies,
they do the best job that they can,
and every subsequent study that I have seen,
has actually found that caregivers live longer.
And that is potentially because a few different things.
Depends on the study you look at.
But it could be related
to psychosocial benefits of caregiving.
Providing care for someone, helping someone out,
that makes you feel good.
And that can impact how your body processes,
how you're doing, how long you live.
There's also some indication that
maybe there is some increased physical activity
when you're a caregiver, you're doing a lot of stuff.
And so that may also impact.
We don't know yet.
But there is some indication that caregivers
may live longer.
And again, this is also related to strain.
So it's low strain caregivers who may live longer.
The high strain caregivers we still worry about.
Caregiving is valuable; really, really valuable.
There has been a study looking
at what they call, valuing the invaluable.
And they look at what the value is,
of the care that people provide,
by looking at the number hours, hours of care
that are provided, and what incomes are,
and they find that the value of care in the US
is 470 billion dollars annually.
In Wisconsin, that's seven billion dollars alone.
We also know that caregiving is critical
to the medical field.
And I talked about that earlier,
where they're providing care
that used to be provided in hospitals.
They are a partner for clinicians,
they are often coordinating care
from different specialists.
And so they really play a critical role that
the medical field would have a really hard time filling.
If we had to return all of that care back
to the medical field, there would be a huge shortage
in support.
And so they really play a critical role,
both in terms of the value of the care that they provide,
and in terms of the services that they provide.
So I hope at this point that I have convinced you
that caregiving is important,
and that it's a big deal in Wisconsin,
and I really want to, I'm going to switch,
I'm going to change gears a little bit here.
So I've shown you how caregivers are impacted by their role,
but there's also a flip side to that equation.
Caregivers also provide support that can have
a huge impact on the person that they're caring for.
So I want to talk a little bit about what
that might look like using one specific example,
looking at spousal caregivers of cancer survivors.
And looking at what that interrelationship is
between the person who has cancer,
and their caregiving spouse.
So we know from the general population
that health reverberates throughout families.
It doesn't just stop with one person, it impacts everyone.
I'm just going to provide a couple of examples
to help illustrate that.
What we're looking at here is a study
that was done, a health and retirement study
by Giuseppina Valle, and she looked
at women and men whose spouse had a health shock.
When I say health shock, that's specifically some kind
of severe health condition.
It could be cancer, it could be a heart attack.
She had a list of them she looked at specifically.
And we're looking at two things,
first we're going to look at depressive symptoms,
and how spouses are impacted in terms
of their level of depressive symptoms.
That's things like feeling sad and blue,
feeling like they can't get going,
and then we're going to change and look at
self-rated health.
That will be next.
So what I'm looking at here
is on Y axis here, we're looking at
mean depressive symptoms.
So again, that's things like not being able to get going,
feeling sad and blue.
And on the X axis, we're looking at over time.
So she measured these health shocks.
Who had a health shock, who didn't,
in 1998 to 2000, and looked at how
that impacted spouses depressive symptoms over time.
Here's what we see.
When women had a spouse who had a health shock,
they had more depressive symptoms
over the next 10 years, starting right away,
and then over the next 10 years, than women
whose spouses did not have a health shock.
Health reverberates throughout families.
Men didn't see that.
That didn't happen in men.
That's because we get to move on here.
When we look at self-rated health,
we're looking at the same thing,
women who had a health shock
and men who had a health shock,
over time, we see that men, instead of reporting
higher depressive symptoms, had worse self-rated health.
So when we're looking at the Y axis here,
higher scores are worse self-rated health.
And what we see is that men whose spouse had a health shock
have worse self-rated health than men whose spouse
did not have a health shock.
We don't really see that in women.
So what we do see, what's clear here
is that health reverberates throughout families.
And that seems to be different from men
than for women.
The impacts for women, and this is consistent
in the rest of the literature, for the most part,
women are impacted more on an emotional level,
whereas men seem to report this more
on a physical level.
I don't really know why, but that's something
that we see pretty consistently.
So then there's a follow up to that.
Not only does health shocks, physical health reverberates
throughout families, emotional health also reverberates
throughout families.
So what we're looking at here, our Y
is depressive symptoms, higher score
is more depressive symptoms, and we're looking
at which of these wives had husbands
with low depressive symptoms of their own,
or high depressive symptoms of their own.
And what we end up seeing is that when women
have husbands with high levels of depression,
their depressive scores go up over time.
When women have low levels of depression,
we don't see that.
They stay the same over time.
So we're seeing not just that physical health reverberates
throughout families, but depression in one person
is connected to depression in the other person
in that couple.
And there's a lot of really interesting theories
that I'm not going to go into about that,
there's things like, there's an emotional contagion theory,
where you can kind of feel this,
if your spouse comes home feeling really crabby,
you end up getting really crabby
over a short period of time, right.
I don't know if anyone else has that happen,
(whispers) but I have had that happen.
And the theory, which I don't know if it's true or not,
is that when you are interacting with someone
that you care about, you tend to mimic
their expressions and their body language,
and so if you're with someone who is upset,
they're kind of hunched over and they have a sad face,
and then you get hunched over and you have a sad face,
and then you get sad.
So I don't know how much that actually,
I don't know how that theory translates into reality,
but that's one of the ideas about
how this potentially happens.
There's other ideas like assortative mating,
people who have a tendency towards depression
may be more likely to marry other people
who have a tendency toward depression,
so it might be that their connection is there,
lots of different theories for why that happens.
But it is a real thing.
We see that, we see this over and over in the literature,
where one spouse impacts the other spouse,
physically, emotionally, mentally.
So why should we care about caregivers?
A little bit of this is review
from what we just talked about earlier.
We care about caregivers because they're people.
We want them to be happy and healthy
just like we want everyone to be happy and healthy.
We also care about them because of that important
and valuable role that they play.
We want them to enjoy being caregivers,
we want them to stay caregivers,
because we need them and because it can be
a valuable role.
And hopefully it is a role that feeds them as well.
But having them continue to provide quality care
helps everyone in the community
and everyone in the family.
And then there's these ripple effects.
Which I'm going to refer to as spillover,
a couple of times, so I just want to declare
that when I talk about spillover I'm talking
about how one person in the couple
is impacting the other person in a couple.
And this just started to be embraced
in the literature in family caregiving.
There's a theoretical and conceptual idea
that we know these people impact one another,
but there hasn't been much empirical literature,
empirical research assessing this.
And that's important.
Because if we know that the caregiver can impact
the patient and vice versa,
we have an opportunity to improve everyone
or we have a situation where one person develops depression
the other person develops depression and we can kind of
have a downward spiral.
We don't want to have a downward spiral,
we want to have everyone lifted up.
So I really wanted to know, looking specifically
at spousal caregivers, and I'm looking
at spousal caregivers of cancer survivors specifically,
how this works, how does the spouse impact
the survivor and vice versa?
And so my specific research questions were to look
at how spousal depressed mood is interrelated
when one spouse has cancer.
How does one person impact the other?
And then, because we know they're differences
by gender, in the general population,
does that differ by whether the survivor
is male or female?
And does that differ from healthy couples?
Is this exactly what we would expect to see
or is it more extreme or less extreme
than couples who don't have a cancer survivor in them?
So some nitty gritty here, the details.
Which hopefully you all think is important as well.
This study was done
in the Medical Expenditures Panel Survey,
this is a nationally representative,
household-based survey.
What they do is they collect a group of people
and they start every year with a new group of people,
and they follow them for between two
and two and a half years.
They have five times, when they call them up
and ask them questions about their household.
So it looks like this, this is just to clarify,
because we'll be talking about timelines
in a little bit.
What they start one panel, and as that panel is finishing
they start the next panel.
So who I looked at in this study,
was specifically I pooled together the panels
that started in 2004 all the way up through 2012.
So I could get a look at a big group of people.
And I pulled out who the people were that had
a cancer related event, diagnosis or disability.
I want to be really clear about who this cancer survivor
sample is, this isn't anyone who's ever had cancer,
this is people who is still experiencing some impact
from the cancer.
So they have some sort of-- they've been diagnosed recently,
they had a medical event,
or they had a disability that's related to cancer.
They're seeing a doctor, they have something related
to their cancer that they're still experiencing.
There are people who were diagnosed with cancer,
subjects who were diagnosed with cancer,
and then haven't had any of these things since then,
it sort of a past event in their life,
they aren't in this sample.
This is just people who are still experiencing
some after effect from their disease.
And I paired them up with their spouses,
who were also in this sample.
So I have the cancer survivors and I have their spouses
and I paired them together.
And then I did the same thing with a comparison group,
matched on age and race ethnicity,
so I could look at couples who
don't have a cancer diagnosis.
And again I want to be clear here,
this is not couples who don't have
any sort of potential caregiving role,
these are people who simply don't have one spouse
or the other who has cancer.
They might have other caregiving roles but it's not cancer.
And so my key variable here is depressed mood.
Depressed mood is the most important thing
that I'm interested in.
This is measured by using the patient health questionnaire,
this is what it looks like,
a lot easier just to show you the questionnaire.
Over the past two weeks, how often have you
been bothered by any of the following problems?
Little interest or pleasure in doing things,
feeling down, depressed, or hopeless.
And then they ranked it on a scale from zero to three,
zero meaning not at all, doesn't happen to me,
three meaning all the time, nearly every day.
And this has been a really well established screener,
there's a cut point where we can sort of differentiate
between clinically significant symptoms
and clinically insignificant symptoms,
that's what we're using here.
But again, this is a screener.
So this is not depression specifically,
this is a diagnosis with depression,
these are people who are feeling sad
and have depressed mood, and should probably
be followed up with by their clinician.
And to figure out if they do have a level
of depressing mood that needs intervention.
And I looked at other things.
This was to help tease out and isolate the effect
of that caregiving, specifically.
Rather than a depressed mood in one person
and the other specifically,
rather than other things
that might confuse the relationship.
Things like if there were difference in age
or education or insurance.
So just to go over that one more time.
And look at it on a timeline.
So I'm interested in depressed mood,
and I was able to measure that at two time points.
I'm calling these time one and time two.
Much easier.
And these were 11 months apart on average.
And then I also had those baseline characteristics,
this is where I measured who had cancer
and who did not, this is where I measured people's age,
people's insurance, all of those nitty gritty details.
So one more slide of nitty gritty details.
So I used, in order to evaluate this,
something called dyadic models.
And more specifically called
actor-partner interdependence models.
And these models are important
because they explicitly take into account
the fact that spouses are related,
and similar to each other, and it can take that
and account for it.
So we don't have a bias, because these people
aren't independent.
So here's what it really looks like.
This is where it's helpful.
We have two people.
We have person one, and we start out by looking
at how their factors at time one influenced
their factors at time two.
So in this case it's depressed mood.
How person one's depressed mood at time one
is associated with their depressed mood at time two.
We do the same thing with person two.
These are called partner-actor effects.
And then, we get into the good stuff.
We look at how person one and their depressed mood
is associated with person two's depressed mood later
and vice versa.
So when we look at this in ours,
what we're looking at is survivors and spouses.
We look at the actor effect of how the survivor impacts
themselves and vice versa, and how the spouse impacts
themselves, and then the survivor is associated
with the spouse and vice versa.
And then we change gears a little bit later
and we look at wife and husbands
I'm just planting the seeds, what's easier to process.
When we get to it.
So these couples are again, throughout
the United States, their average age is 61 years,
they're primarily white non-Hispanic,
47 percent have a high income greater
than 400 percent of the federal poverty level.
Most of them have at least one kind of health condition
that's not including cancer.
For the cancer survivors, they have been
on average, six and a half years from diagnosis,
but there's a big range there,
32 percent are still receiving treatment,
the rest are not receiving treatment,
either because treatment is over
or because they haven't started yet
or for some other reason.
And there's a huge variety of types of cancer
that we're looking at here.
The biggest ones were breast cancer
and prostate cancer, which is what we would expect.
And then there is a large variety
of other types of cancer in there as well.
So now we get to the good stuff.
What did we see?
So when we looked at survivors and their depressed mood,
over an 11 month period.
We see that survivors are depressed early on,
they're 12 times more likely
to also have depressed mood later.
That makes sense.
Depression is a long term event, often.
It takes a long time to process through depression.
And so we're not surprised when we see people
who have depressed mood at time one
also have depressed mood at time two.
Same thing with spouses.
When spouses are depressed at time one,
have depressed mood at time one,
they are 15 times more likely to have depressed mood
at time two.
Again, we're not surprised by that.
People impact themselves.
So what happens though, if the survivor
has depressed mood at time one?
In that case, the spouse is 1.9, almost 2 times
more likely to have depressed mood at time two.
But this isn't statistically significant.
Which means we can't really differentiate
if it's actually different than zero
or if it's just noise in the data showing us
that there looks like there might be an effect.
But it does trend in that direction.
But when the spouse is depressed at time one
we see that survivors are 4.3 times more likely
to have depressed mood at time two.
So when their spouse, when their caregiving spouse
has depressed mood and is feeling sad and blue,
cancer survivors are much more likely
to become depressed later.
Because we're taking into account what
their depression was at time one.
This is really important.
Because depression in cancer survivors,
depression is not good in anyone.
We don't want anyone to be depressed.
But in cancer survivors,
it's associated with worse outcomes.
It's associated with earlier mortality,
it's associated with greater affects,
worse quality of life.
So that's impactful, for the whole family.
Not just the person who's feeling depressed,
but also the person that they're caring for.
So now I want to look at, does this differ
for males and females?
And if you remember back to where we talked about
a few minutes ago, we know that women
are more likely to have a spillover effect
of depression or depressed mood than men are.
And so what we're going to look at here is where
husbands are the cancer survivors,
and wives are the caregivers, and I tried to note that
so it's a little easier to see,
so the SX stands for survivor, the CG stands for caregiver,
and then we're going to look at where the wife
is the survivor.
And what we see is that when the husband is the survivor
and the wife is the spousal caregiver,
we see that when wife caregivers have depressed mood
at time one, their husband survivors are four times
more likely to have depressed mood at time two.
So this is very similar to what we saw
when we looked at both groups together.
But when we look at where the wife is the cancer survivor,
we see that her husband, when he has a depressed mood,
she is nine and a half times more likely
to develop depressed mood at time two.
Much different, much bigger.
Important on both counts, but wives are impacted more.
I don't know why that is,
there's something going on there,
but it's consistent with what we see
in the general population.
Where wives are more strongly impacted
in terms of their depressed mood.
Finally, last data slide, I want to know
if this differs from healthy couples.
Is this what we expect to see,
or is this something that's different?
And so what we see, and again, this is where
the husband has cancer,
I'm separating 'em out here by husbands and wives
so we can compare healthy couples
to couples with cancer.
When the husband has cancer, again,
that impact of the spouse to the survivor
they're four times more likely to develop
a depressed mood.
But when we look at comparison couples
who don't have a cancer diagnosis,
we don't see that at all.
We see a smaller affect size here,
only 1.5 times more likely.
And it's not statistically significant.
So we don't know if it's really different from zero.
What about when the wife has cancer?
Again, when the wife had cancer,
and her husband experienced depressed mood
she was nine and a half times more likely
to experience depressed mood herself.
In comparison couples, husbands didn't have
that same effect on their wives.
We see, it shows of 0.6 and again,
it's not statistically significant,
so it's very different.
Very different from what we see in healthy couples.
So just to review that one more time,
when spouses report depressed mood,
cancer survivors were four times more likely
to be depressed later, 11 months later.
Female survivors in particular
were nine and a half times more likely
to be depressed if their husbands were depressed.
And we don't see this in the impact
of survivors on their spouses
and we don't see this
when we look at comparison populations.
It's smaller and not statistically significant.
So there's something going on here.
There's something in particular about cancer survivors
who are more vulnerable to the spillover
from their spouse.
And that becomes really impactful
because like I said we don't want cancer survivors
to be depressed.
It's really bad for them.
We want them to be able to improve their mood,
and there's potential for that.
There's opportunity to utilize this information
to improve not just caregiver outcomes,
but also cancer survivor outcomes.
So I'm going to spend the last few minutes,
just making sure I'm on time here,
talking about what this means in terms of implications,
and planting a seed, of thinking ahead
towards potential caregiving responsibilities
so that we can prevent depressed mood
and depressive outcomes and other poor quality
of life outcomes and other physical outcomes
in caregivers and their family.
So the implications here is we have the opportunity
to help caregivers and their family members.
Why I'm here is because caregiver education
is a part of this.
What we hear from caregivers is that
they don't necessarily feel like they're able
to take good care of themselves.
They don't feel like they can,
they don't feel like they should,
caregivers sometimes report feeling guilty
about doing things like going to see their friends.
Or going to exercise.
Or taking time to have something
other than fast food for dinner.
And this isn't across the board, this a generalization.
But we do hear from caregivers
that they struggle with self-care.
Because they feel like they need
to focus all of their energy on the person
that they're providing care to.
This research suggests that if they take care
of themselves, that's not just for them,
that's also for the person that they're caring for.
It's critical for them to take care of themselves
in order to be able to take care of the person
they're caring for, and because their well-being
has an impact on the well-being
of that care recipient.
So I'm here to shout that, loudly and clearly.
If you're a caregiver, please take care of yourself.
It's really important not just for you
but important for everyone else in your family as well.
So this is an opportunity to tell caregivers that.
And give them permission, give them a prescription
for self-care, to get treated for depression
if they're feeling down,
in order to raise up the whole family, potentially.
This also speaks towards family centered care,
so what this means is a focus of clinical care
not just on the person who is
the care recipient, the person who is the patient,
but also realizing that the family context
can have a big impact on that person's outcomes.
Pediatric care has done a much better job
of adult care at embracing this.
You go to a pediatric appointment,
they recognize that mom and dad
are important to how this child is doing.
So they tend to have an easier time of wrapping
the whole family into the care that they provide.
That doesn't happen very much on the adult level.
And so this is an opportunity to move forward
and find a way to promote family centered care,
within a clinical setting and test it
and see if that works.
To improve outcomes for both the caregiver
and the patient.
So this is also an opportunity
to help caregivers access resources.
I don't know if anyone's ever Googled,
"caregiving resources in Wisconsin,"
it's really overwhelming.
There's so many resources available for caregivers.
And so that's great, but the fact that it's overwhelming
means that we have an opportunity to make it easier
and make it better so that caregivers
can find these resources more easily
and to let them know that they really should
be accessing those resources.
They have a right to them.
And they could potentially be really helpful
in preventing negative outcomes.
And promoting those positive outcomes.
So all of this comes around, not having
the caregiver being the invisible patient.
This is a New York Times post from back in 2014,
with a report from someone who was a caregiver,
talking about how she,
how she was received in the clinical setting.
No one ever asked her how she was doing.
That happens all the time.
But caregivers are often invisible to themselves as well.
People don't often recognize that they're family caregivers
until they're already at a crisis point.
Because you slide into it so easy.
You're acting as a spouse, you're acting as a child.
You're doing things that is part of the relationship
that you have with this person.
And yet you're still in, what researchers,
and what clinicians consider as a caregiving role.
And having caregivers being invisible to themselves
as well as to the clinical community
and possibly to the larger community,
that's something that we have the opportunity to change.
We want to prevent people being the invisible patient.
We want to advocate for themselves.
So the next steps here.
The first, most obvious step here is,
well, we know that there's a potential for
depression to spillover from the caregiver to the patient,
what if we just try
to get caregivers treated for depression?
What if we had made it easier to get treated?
What if we found out what happened there?
We don't know that yet.
So that's the next step.
What happens if we help caregivers
get treated for depression?
Does that help the person that they're caring for as well?
Thinking about those access to resources,
decreasing barriers, to resources,
and barriers to mental health care specifically,
at the individual and community level,
could be really impactful.
And so figuring out how to do that
and help people have an easier time getting treated
for depression is huge.
And then there's a caregiving culture.
There's a tendency to, for caregivers to be very stoic,
and that's adaptable, to some point.
That's adaptive.
Where it's a coping strategy.
If you're stoic, you're fine, and everything is fine,
that can be easier to deal with over the short term,
but over the long term, that can be maladaptive
and problematic.
And so, figuring out how we can embrace
the caregiving culture where it's simply the culture
where people ask for help.
When they have a caregiving role, they ask for help.
They see their clinician.
They talk loudly to their care recipient's clinician,
to get the help that they need.
They talk to clergy, they talk to librarians,
they talk to whoever they need to,
whoever is in their lives, in order to get
the help that they need, that's a caregiving culture change
that could potentially be impactful as well.
So I just want to end
by planting that seed,
and really shouting my message,
that if you are a caregiver, it's important to get help.
Because you can't do it on your own.
It's like a barn raising.
You'd never try to do a barn raising on your own.
You really need to have other people there,
because it's really hard to do on your own.
And so if you're a caregiver, and I hope
I'm preaching to the choir here,
I hope everyone knows this, ask for help.
Not just from your family members and friends,
but also from the community.
All those caregiving resources that are available.
Monetary resources, support resources, ask for
those early, before you're overwhelmed.
What we see with caregivers is that they often
don't ask for help until they reach a crisis point.
And by that time it's often not as effective
to give them those services.
So things like respite care, for example,
where you have the opportunity as a caregiver,
to get out the house, go see a movie,
go run some errands, that works really well early on.
Before people are overwhelmed.
By the time people are overwhelmed,
having two hours out of the house
isn't going to cut it anymore.
And so asking for help early
and getting those resources early is important.
Having caregivers do things for themselves
is pretty critical.
This is things like getting out of the house,
going and seeing friends, exercising,
whatever it is that they need to do for themselves.
Whatever works for them.
Embracing those moments of joy and laughter
that they have in their life
can be really, really helpful.
There is a caregiving self-assessment.
So if there's a caregiver who's feeling kind of down
and blue and isn't really sure
if they're being impacted strongly
by their role, the American Medical Association
has a caregiving self-assessment,
it's really easy to find on the internet,
and it can help tell caregivers
if they need to see their doctor
about potentially getting treated for depression
If they're facing something that is more than
they can handle on their own.
And again, and this is just repeating what I said before,
once people become overwhelmed as caregivers,
it's a lot harder to get them back on track.
So acting early is important.
And this all comes to this balance of resources and stress.
So we talked about before, how stress is a key factor
in the caregiver outcomes, it's not just caregiving,
it's the stress that they experience,
things like going and seeing friends,
social support, taking good care of themselves,
accessing those resources, getting respite care.
Those all fill into caregiver's internal resources.
Add into it, make sure it's nice and robust.
The stressors of caregiving, having an argument
with a secondary caregiver,
having to go to 15 appointments in two and a half weeks.
All of the other things that are stressful
about caregiving, those pull out of the resources.
And so you really need to start keep feeding in
to support those resources in order to--
your internal resources--
in order to have it outweigh
the balance of that stress and that burden
that caregivers can experience.
So this is where I think it's also very important
to plant a seed.
Because if you might become a caregiver,
this is the time
to just be aware of what that role might be like for you.
It's really hard to think of family caregiving
from a preventive standpoint but that's what
we really need to do.
Because we don't want to have to intervene
once caregivers are already depressed,
we want to keep them from being depressed
in the first place.
So it's beneficial for people who might
become a caregiver, to think and communicate
in advance, and this is true for people
who might need a caregiver as well,
to communicate, think about what their own desires are,
and communicate their wishes.
But to have those kinds of conversations
and develop that communication strategy.
Building those internal resources,
social networks, resiliency,
building your communication skills,
that all can be helpful.
And more generally, this is my key point here,
knowing that there are external resources available
and knowing how to access them.
And knowing what a caregiver is,
so that when someone becomes a caregiver,
they know right then that there are resources available
to them and that they can and should be accessing.
So that's my soap box.
I just want to end with a direction
where you can get resources,
where caregivers can get resources.
And in particular, the 80 RC is here,
and this is a state and locally funded organization,
network aging network, that helps caregivers and families
find resources that they are eligible for,
and that they need.
So they are really good first place to go to.
Because they are locally funded and state funded.
They are the places to go.
But there's others in addition.
Going to anywhere that you would normally
get information from, from clergy, from UW Extension,
family living programs agents,
from lots of other areas where you can,
you can get keyed in to what resources
you're available for,
the trick is, to just start doing it.
Reach out right away.
And just figure out what you're eligible for.
And what they can do for you.
And how that can help your family.
So that's all I've got. Thank you.
(applause)