Patients, Providers and the Family:
The Dynamics of Geriatric Care
in the 21st Century
Victoria H. Raveis, Ph.D.
New York University
Psychosocial Research Unit on Health Aging and the Community
Presented April 7, 2014
Geriatric Grand Rounds Series
SUNY Downstate Geriatric Fellowship Program
Geriatric Care in the 21st Century
Increased longevity
Population Aging

Proportion 65+ growing by 2% annually

Oldest-old (85+) are fastest growing age group

By 2050, one fifth of older persons in the U.S. will
be 85+

Majority of older persons are women, particularly
among the oldest-old
Geriatric Care in the 21st Century
Shift from acute to chronic disease
Illness and Older Adults

Incidence of chronic disease increases with age

Co-morbidity common

Risk of onset of acute disease heightened

Escalation in disability and dependence with aging

Burden of care is greatest among the oldest-old
Health Care Changes Impacting
Careprovision

Shift from acute disease to chronic illness in old age
expands the scope and duration of families’ caregiving

Improved medical management efforts make possible the
administration of treatments in outpatient settings and at
home

With shift from inpatient to outpatient care elders remain
in the community during illness episodes
Care Provision to Older Adults

Therapies that works well in younger adults may not
apply to older patients, disease management more
complex

Elderly more likely to have co-morbid conditions and
may require more extensive careprovision

Illness event may not initiate families’ care provision,
but expand upon existing caregiving
Geriatric Care in the 21st Century
Societal Factors
Careprovision and the Aging Family

Families provide a substantial amount of long-term
and chronic care

Expectation that families provide informal care varies
from cultural expectations to legal responsible in
different societies

Older caregivers caring for oldest-old may themselves
need support and assistance
Change in Family Structure and
Patterns

Family size decreasing due to divorce, co-habitation,
delayed marriage (and childbirth), reducing number
of kin for future support

Women are engaged in employment outside the
home

Geographic dispersion of family members due to
education, employment, economic opportunities,
marital patterns
Caregiving Situation

Long-distance caregiving commonplace

Sequential caregiving roles a frequent occurrence

More time may be spent caregiving than childcare

Oldest caregivers may have disabilities or
illnesses that impede their careprovision
Informal Care-provision

National data indicates that 21% of adults were
caregivers to another adult in the prior 12 months

Families have a central role in patients’ treatment
and recovery, families provide 75-80% of care to
elderly relatives

Caregiving often sequential, caregivers may
spend more years in elder care than childrearing
Caregiving is Gender-based

Women are the primary caregivers to ill family
members, including in-laws

Women providing care are likely to be balancing
marital, child-rearing, and work obligations
Spousal Caregiving and Aging Families

Death of a spouse is a profoundly stressful event

Widowed are at increased risk for mortality and morbidity

Recently bereaved spouses have higher death and
suicide rates than age-matched controls

Widowed have an elevated incidence of depression,
somatic complaints, substance abuse, and physical
health problems
Care Provided by Caregivers

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Emotional support
Provision of instrumental aid
Assistance with personal care
Home health care
Mediation with formal care providers
Financial assistance
Housing
Transportation
Caregiving to Older Adults

Caregiving to older adults impacted by
developmental issues relevant to their care,
such as decreased stamina and physical
strength, frequent co-morbidity and heightened
disability
Re-inforces Family Bonds
“We, the family, were always close, but I think in
some ways it brought me closer, at that time,
because we all rallied around my mother. So that
was nice to see, that we all had a common goal in
that respect.”
Source: “Aging Families and Breast Cancer”, VH Raveis
Caregiving is Meaningful
“She makes me believe that I’m making a
difference in her life, and I’m actually helping
her, that she admires me, and that she
respects who I am, and as a daughter
especially.”
Source: “Aging Families and Breast Cancer”, VH Raveis
Caregiving Strengthens Relationships
“Although we had a good relationship before, I
think that it just gave us that extra connection,
because now she really felt that she could rely
on me.”
Source: “Aging Families and Breast Cancer”, VH Raveis
Challenges of the Caregiving Situation

Family caregivers are likely to be experiencing
a high demand for emotional support
themselves.

Anxiety and concern experienced over their
familial risk status is compounded by the
distress and strain of providing assistance
and support to their ill relative.
Caregiver Relatives’ Special Issues

Family members learning of their relative’s diagnosis
simultaneously learn of their own risk status

Caregivers must integrate their reactions to relative’s
illness while dealing with their feelings of personal
susceptibility

Caregivers experience relative’s illness first-hand

First hand exposure to illness experience may impact
caregiver’s sense of risk and increase personal illness
concerns
Impact of Caregiving Experience On
Caregiver

Caregivng exacts an emotional toll

Caregiving places a burden on the family

Caregiving complicates relationships

Families can feel an increased sense of vulnerability
Emotional Response: Shock

Intense impact:
“I was in such a state of shock that you don't -you freeze, and you don't know what to do.”
“I felt, you know, like I'd been kicked in the
stomach. Just the wind knocked out of me.”
Emotional Response: Shock
(continued)

Lack of forewarning
“It was a shock. I -- my heart started racing and -because she started crying as she was telling me.
So that kind of-- I got very upset. I was crying, I
was breathing heavily; I remember I was
hyperventilating. It just came out of left field. I had
no idea . . . . And it just-- it was just a complete
shock. It was like I got cold-cocked in the face.”
Emotional Response: Disbelief

Difficulty accepting the news
“Even though the doctors are saying all this . . .
you kind of don’t believe it.”
“At first, I was in, in denial...it took me a while for
me to really come to terms with reality, that in
reality that was cancer.”
Emotional Response: Disbelief
(continued)

Absence of prior exposure to adverse events
“And I just was thinking like: ‘This cannot be my life.
But I won’t -- I don’t believe this.’ It was such shock
and disbelief, like -- it is not like my life has -- like I
have friends who like every day there’s something
else. That her grandmother had a heart attack and
her this and that. No, that’s not my life. I don’t know
from these traumas. I don’t know from these horrible
mishaps. You know? Like I don’t know from bad
things much.”
Emotional Response: Panic

Desperate effort to help
“I would say just panic, and just -- desperation -- I
just started trying to call anybody who I knew who
had a wife, a mother, or somebody, to just try to find
out as much as I could, to try to help her.”

Immobilized from taking purposeful action
“You're panicky; you're splattered -- your head is
splattered all over; your thoughts are jumping --and you don't know what direction to go into, you're
just wild.”
Emotional Response: Fear

Life-threatening disease:
“I got so scared....lots of things go through your
head. And they're not the greatest.”

Living with uncertainty
“I still -- to this day….I’m going to be scared for her
health and I’ll be scared of something happening
Emotional Response: Distress and
Demoralization

Overwhelmed
“I completely fell apart....I was in complete tears and I
had that pit in my stomach, and it was just a
horrible horrible feeling.”

Impacted ability to relate to others
“When it just happened, I couldn’t deal with it. I didn’t
want to talk to anyone, I just wanted to lay in my
bed. Like people would come to my house, I would
just close them out.”
Emotional Response: Distress and
Demoralization (continued)

Trauma long-lasting and recurrent
“We didn’t have phone service, and I’ll never
forget having a cell phone for about a week, and
trying to call doctors and get information, and to
this day, when I hear that ring, I like jump
through the ceiling. We actually changed the
ring on the phone, because ...if I hear that tone, it
just hits me -- it just brings me back.”
Emotional Response: Sadness
Intense and persistent feelings
“I felt very sad at that time. I still do when I talk about
that.”

Helpless
“There was really nothing I could do to help her.
You sort of feel helpless.... I felt very bad for her. I
was sad.”

Emotional Response: Broader Family
System is Impacted

Concern about other relatives’ well-being
“If something happened to her, that would really kill
my mom, terribly.”

Feeling without hope
“All of us, her children and whole family thought that
the world had ended because it was a very big thing
for us.”
Caregivers’ Perceptions of Nature and
Consequences of the Health Condition

Health condition can present difficult challenges

Treatment experience can be unpleasant and
traumatic

Anyone can be at risk
Treatment Experience Can Be
Unpleasant and Traumatic

The radiation was starting to affect her breast, and it
did burn, and she was peeling…[it] got to be like –
traumatic. And she started saying that she felt like not
going to radiation treatments anymore.

When her hair started falling out, it started falling out
in chunks. …It was unbelievable to see it happen. ...It
was very traumatic.
Anyone Can Be At Risk

When I went to the hospital with her, the day that
she was having surgery, I saw many young women,
which surprised me. I always thought that they
were older women…it was like a wakening call,
just, you know, I realized that anyone’s at risk, and
no matter how young you are, it—just anyone is at
risk and it made me realize that I am even at a
higher risk, a greater risk than most.
Caregiving Engenders Burdens

The first few months it impacted a great deal -- from
the amount of time I spent with friends, amount (of)
sleep, amount of leisure. I feel like every waking
moment was either work or care.

I rarely see my friends anymore. I don’t really go out
with them as much…I don’t know how my mom’s
going to feel…I can’t make any definite plans.
Relationship Change: Perceived
Patient as Vulnerable

Challenged long-standing images of strength
“We call her the Iron Maiden, because she’s been
through so much, and she just takes it all in
stride. And it was the first time that I had actually
witnessed her more as, you know, someone
who’s fragile or delicate.”
Relationship Change: Perceived
Patient as Vulnerable (continued)

Necessitated adjusting to a changed reality
“For her to get cancer was ...it just didn't make
sense in the way I saw my mother. She, she
doesn't get sick. . .it just brought home that she's
susceptible to -- to disease, and illness.”

Precipitates life cycle developmental issues
“[It’s] a pillar of your life coming down.”
Relationship Change: Perceived
Patient as Mortal

Initiates life and death concerns
“Once your parents get sick, it changes -- things
change. ...Your perception of their immortality -or mortality. And vulnerability.”

Apprehension over the dying process in cancer
“So, my biggest fear, definitely, is that she was
going to die, followed by that she’s going to be
in a lot of pain.
Relationship Change: Perceived
Patient as Mortal (continued)

Premature life cycle transition
“I know I’m going to lose her someday. But normally,
I’m going to lose her, but I didn’t have to lose her
this way. You know, with being sick…being -- with
cancer.
Relationship Change: Asynchronous
Life Transition

Premature life cycle transition:
“I know I’m going to lose her someday. But normally,
I’m going to lose her, but I didn’t have to lose her
this way. You know, with being sick.”
Relationship Change: Intensified Bond

Value being together
“It just made me more aware that I need to love
every minute I have with her.”

Improved relationship:
“We have been very, very close, since this
happened….We were always close, but we’re
more tighter now.”
Relationship Change: Intensified Bond
(continued)

Redefined personal values
“I learned what she meant to me more than ever. . . I
looked at things -- I'd say: ‘What if I have this
house?’ And then I said to myself, ‘So what -- what
is it good for?’ It means nothing. Nothing at all.”

Increased tolerance:
“I don’t’ think we snap at each other as much as we
might have before. And I think a lot of times, where I
would have remained angry, I let it go, because it
wasn’t worth it.”
Caregiving Relationship Issues:
Sharing
“Usually at night or sometime -- you
know, I wonder what, what, what I would
do when she wasn't here. But I don't -that doesn't come up much with her but
she can -- you know, we -- it's
understood. When we look at each other
once in a while, we -- we know.”
Relationship Change: Increased
Protective and Supportive Behavior

Hide worries and fears
“I didn’t want my mother to know that we were
worried. Because, letting her know that, we probably
increase her pain. We probably would scare her.”

Project strength and confidence
“I only cried when my mother was not around…I felt I
needed to be strong for her…it just became that I
had to be there for her and I had to support her, and
I had to -- I had to be the strong one.”
Relationship Change: Increased
Protective & Supportive Behavior

Exert self-control
“…having to present myself to my mother, as if it -- as
if nothing was happening, as if, ‘Oh, well, so what?
We deal with it, it happens.’ Well, I was burning
inside. I was suffering. But I could never let my
mother know that I was worried, because, number
one, I knew she was worried…and to me, it was a
struggle, because I have to deal with my own
anxiety, and, at the same time, I have to be able to
show something different to my mother.”
Caregiving Relationship Issues:
Differentiating Personal Needs
“There are times I can't even go home. If
we have fun here I won't even share that
with him. Some, but not all. Because I
know that he lives every day with this cloud
over his head. And I don't want him to think
that I'm so callously disregarding that pain
that he feels. I'm suffering it too. So
whatever fun I might have, it's really
clouded over, with the thought of this.”
Caregiving Relationship Issues:
Protect Care Recipient’s Needs
“My husband is in denial for most of this
period, even though the doctors told us both
that this is a terminal condition...I know that
he is dying, but he refuses to acknowledge
this and I have to play two roles. I’m always
on guard, but sometimes I forget -- I have to
at least not give him the bad news”
Source: Raveis, “Facilitating Older Spouses’ Adjustment to Spousal Death”
Relationship Change: Role Reversal
Accompanied Care Provision

Fundamental shift in roles
“There was a definite role reversal, where I would
always look to her for support and now she looks
to me for support. So, that was a big change.”
Relationship Change: Role Reversal
Accompanied Care Provision (cont’d)

Significant life cycle transition
“My mother’s always taking care of me. So like it was -at the very beginning stages of me taking care of her
was very weird....I felt like I have to be strong for her.
And I felt I had to like -- I felt the roles reversed. I had
to be comforting her....My instincts were to be the kid,
but I couldn’t....I feel I have a kid, to a certain extent,
sometimes. Like my mother’s my child, like I have
these obligations to her.”
Relationship Changes: Dissension among
Family Members

I had to disagree with a lot of family members about
(treatment), but that’s okay. And that’s hard too,
because you’re trying to find out about a disease, and,
and also you’re getting the input from everybody else,
and their thoughts, but meanwhile, they’re not doing
the footwork.

My sister is on vacation, she took like a month-and-ahalf vacation, and it was in the middle of my mother’s
chemo…. She calls once in a while, but she didn’t say,
“Okay, I’m going to come back…I’m going to give you
a break, as you’re working.”
Caregiving Relationship Issues: Family
Interpersonal Stresses
“This is my partner. It is your father.
You see him differently than I see him.
But I'm trying to keep that road as
smooth as I can, with all these rocks that
are in the way and obstacles for all of
us.”
Awareness of Cancer Risk:
Realization of Personal Vulnerability

Destroyed beliefs of immunity
“This has been an experience that has opened my
eyes. It makes you think, ‘My mother have that
illness, I could have it too’.”

Attribute risk to family history
“You know, beforehand I felt I had no risk
whatsoever. And now, with this, I feel I am much
-- I am at a higher risk, given my history.”
Caregiving Challenges:
Tasks Require Specialized Skills
”The doctor had told me that I have to take
off the bandage, and try to re-bandage it. …I
had to do it, so I did it. But I was afraid that I
was going to hurt her or pull out the
stitches.”
Source: Raveis, “Aging Families and Breast Cancer”
Caregiving Challenges:
Caregiving is Life-encompassing
“The first few months it impacted a great
deal -- from the amount of time I spent with
friends, amount (of) sleep, amount of
leisure. I feel like every waking moment
was either work or care.”
Source: Raveis, “Aging Families and Breast Cancer”
Caregiving Challenges: Caregiving
Impacts All Activities
“I rarely see my friends anymore….we have to
plan, you know, we have to talk about it a week in
advance and then it’s still not final until the day
we’re going to actually go out, because I don’t
know how my mom’s going to feel. ... I can’t
make any definite plans.”
Source: Raveis, “Aging Families and Breast Cancer”
Caregiving Challenges: Personal Needs
Put Aside
“I've resigned myself to keeping and doing as
much as I can for him. Keep the level and
quality of his life at a certain peak, and live
with it. And I'll deal with it and my loss and
my despair...But right now I'm not going to
wallow into what's coming, I have a job to do.”
Caregiving Challenges: Chronicity of
Caregiving
“He’s had four or five near-death
experiences, cerebral hemorrhages, and
he’s survived through all of it. This pattern
of alive-not-alive is very difficult to cope
with. It’s gone on for too long, and it tires
one out, it’s like a slow leak. I’m completely
exhausted.”
Source: Raveis, “Facilitating Older Spouses’ Adjustment to Spousal Death”
Caregiving Challenges: Care is Unending
“Sometimes I feel trapped . . . not being
able to really breathe. You know, like
breathe a sigh of -- whatever. That it might
be over. So I can't, I can't let go yet. I can't
give up, I can't.”
Caregiving Challenges:
Caregivers Are Mainstays
“I only cried when my mother was not
around… I felt I needed to be strong for her…it
just became that I had to be there for her and I
had to support her, and I had to -- I had to be
the strong one.”
Source: Raveis, “Aging Families and Breast Cancer”
Caregiving Challenges: Facing Illness
Progression
“I mean it breaks my heart to see how he, you
know, he's acting and everything. And to see
him deteriorate like that. Such a big healthy
man, and to lose your capabilities is a tragedy.”
Source: Raveis, “Facilitating Older Spouses’ Adjustment to Spousal Death”
Caregiving Challenges: Futility of
Advanced Disease
“My own fatigue is because I know where
it's going. Nowhere. He's going to die.
So all of this is – nowhere.”
Source: Raveis, “Facilitating Older Spouses’ Adjustment to Spousal Death”
Caregiving Challenges: Confronting
Diverse and Intense Emotions
“I am puzzled, because, like when he let
me out of the car right now, I got out of
the car and I said: Oh, I hate him, I hate
him. I can't wait to get rid of him. Yet now
I feel he's a good man, and I love him.
So it pains me...So it’s tearing me apart.”
Caregiving Challenges: Anticipating An
Unknown Situation
“I don't know what I'll be like if I see -- if I
watch him in that bed, suffering, or know
that he's dying. I don't know what this will all
be like for me. I've never experienced
anything like this. So I only hope I have the
strength and the wisdom to hold on to
myself and don't snap.”
Caregiving Challenges: Facing An Altered
Future Life
“I'm just heartbroken, and I'm frightened
of, uh, you know, being without her and
being alone and, you know, I'm just -- I try
to imagine what it would be like
sometimes and I just -- it's hard for me to
think about it.”
Preparing for Life Without Ill Relative:
Practical Concerns
“He has been after me, according to him,
for the last five years, to sit and go over all
our finances, which he handles -- most of
it. And since I haven't seen a need, I keep
postponing. I say I'm busy, I don't want
that kind of thing. And he's saying, Well,
we have to sit down and do it.”
Preparing for Life Without Ill Relative:
Altered Future
“I think a little about what, what it would be
like without her...I think about what I would do,
or how I would fill my days, or where I would
go. And, you know, how much I'd cry. And I
think I'd -- you know, I, I can manage. It would
be very difficult, but -- and I don't think I'd
want to be with anybody else for a long long
time.”
Consequences of
careprovision to the caregiver
Caregiving Consequences

Costs to the caregiver of dealing with the multiple
demands and challenges of caregiving in chronic illness
are far-reaching and diverse

Careprovision can adversely impact various aspects of
the caregiver's life and affect caregiver psychological
and physical well-being

Older caregivers are at higher risk for adverse
consequences, chronic illness or disability
What meaning or value is derived
from being a caregiver?
Positive Consequences Can Emerge:
Improved Social Relationships

I think we’re closer. Sure. But I can’t explain in what
way, I just feel a closeness to her.

We, the family, were always close, but I think in some
ways it brought me closer, at that time, because we
all rallied around my mother. So that was nice to see,
that we all had a common goal in that respect.
Positive Consequences Can Emerge:
Personal Growth

It’s been very good for me to be able to do these
things for her, and show her that I can do things
for her.

I think that in another situation...if it happens to me
or to another family member or one of my children,
then now I think I’ll be able to deal with another
situation...I think that it’s something that has made
me very capable.
Opportunity for Reciprocity
“I think, you know, it feels good to help your
mother through a difficult situation, when she’s
always been there for you…She’s always say:
‘Oh, don’t come, it’s too much, it’s too much.’ And
I’d say: ‘Mom, you don’t get what you don’t give.
You’ve given me so much, now let us give it back.’
And – so it’s been – nice to be able to help her.”
Source: “Aging Families and Breast Cancer”, VH Raveis
How can health professionals
help?
Caregiver Needs: The 3 R’s

Resources - Information, education, training, case
management

Respite – Time away from care demands, downtime, discretionary leisure time

Recognition of the costs - Recognition of
lifestyle changes, financial costs, & health
consequences; programs that restore some of the
losses associated with care provision
Resources
“So I was just on the web site constantly, looking
at information and, and protocols and surgery
and drugs and chemo and radiation and risks
and — programs — and talked to a couple of
colleagues who I know had parents that went
through cancer.”
Source: “Aging Families and Breast Cancer”, VH Raveis
Respite
“I'm tired of planning. I am tired of just
climbing those steps, and not knowing what
I'm going to find. Tired of making the
decisions, I'm tired of -- I want to be held. I
want to be coddled. And there is no time for
this.”
Source: “Facilitating Older Spouses’ Adjustment to Spousal Death”, VH Raveis
Release
“Sometimes I feel trapped...This, what's going on
in my life, and not being able to really breathe.
You know, like breathe a sigh of -- whatever. That
it might be over.”
Source: “Facilitating Older Spouses’ Adjustment to Spousal Death”, VH Raveis
Recognition of the costs
“People don’t consider the spouse. Only on
one or two occasions do others ask me how I
am. I try my best to keep her happy and
comfortable at some expense to me. People
don’t consider the guy behind the gun.”
Source: “Facilitating Older Spouses’ Adjustment to Spousal Death”, VH Raveis
View Families as a Unit of Care

Families have a significant careprovision role in
chronic illness

Family members are not just part of the care
team but are also impacted by the illness

Management of chronic disease offers
opportunities to attend to families’ informational,
emotional, and practical support needs
Enable Discussion of Illness Concerns

Be available and willing to address family
concerns about patient’s condition and care

Provide reassurance that appropriate
therapeutic and ameliorative measures are
being utilized

Encourage open communication and facilitate
opportunities to discuss emerging concerns
Caregiver intervention needs



Families can benefit from training and education that
maximizes their abilities and skills and provides them the
information and resources they may need
A short-term problem-solving skills training program for
familial caregivers equips family caregivers with problemsolving skills and knowledge
Provide them with a more adaptive means of attending to
any symptoms their relative may be experiencing during
the disease course
Patient’s benefit from caregiver
intervention/training programs

Impact patients’ health related quality of life as
family caregiver’s become skilled at:

Symptom recognition
Improves symptom control
Advocacy with health professionals
Enhancing adherence to symptom management
options


