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Patients, Providers and the Family: The Dynamics of Geriatric Care in the 21st Century

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Title: Patients, Providers and the Family: The Dynamics of Geriatric Care in the 21st Century


1
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

2
Geriatric Care in the 21st Century
  • Increased longevity

3
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

4
Geriatric Care in the 21st Century
  • Shift from acute to chronic disease

5
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

6
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

7
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

8
Geriatric Care in the 21st Century
  • Societal Factors

9
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

10
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

11
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

12
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

13
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

14
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

15
Care Provided by Caregivers
  • Emotional support
  • Provision of instrumental aid
  • Assistance with personal care
  • Home health care
  • Mediation with formal care providers
  • Financial assistance
  • Housing
  • Transportation

16
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

17
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
18
Caregiving is Meaningful
  • She makes me believe that Im making a
    difference in her life, and Im 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
19
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
20
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.

21
Caregiver Relatives Special Issues
  • Family members learning of their relatives
    diagnosis simultaneously learn of their own risk
    status
  • Caregivers must integrate their reactions to
    relatives illness while dealing with their
    feelings of personal susceptibility
  • Caregivers experience relatives illness
    first-hand
  • First hand exposure to illness experience may
    impact caregivers sense of risk and increase
    personal illness concerns

22
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

23
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.
  •  

24
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.
  •  

25
Emotional Response Disbelief
  • Difficulty accepting the news
  • Even though the doctors are saying all this . .
    . you kind of dont 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.

26
Emotional Response Disbelief (continued)
  • Absence of prior exposure to adverse events
  • And I just was thinking like This cannot be my
    life. But I wont -- I dont believe this. It
    was such shock and disbelief, like -- it is not
    like my life has -- like I have friends who like
    every day theres something else. That her
    grandmother had a heart attack and her this and
    that. No, thats not my life. I dont know from
    these traumas. I dont know from these horrible
    mishaps. You know? Like I dont know from bad
    things much.

27
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.

28
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.Im going to be scared
    for her health and Ill be scared of something
    happening

29
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 couldnt deal with it.
    I didnt 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.

30
Emotional Response Distress and Demoralization
(continued)
  • Trauma long-lasting and recurrent
  • We didnt have phone service, and Ill 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. 

31
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.
  •  
  •  

32
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.

33
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

34
Treatment Experience Can Be Unpleasant and
Traumatic
  • The radiation was starting to affect her breast,
    and it did burn, and she was peelingit 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.

35
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 womenit was like a wakening
    call, just, you know, I realized that anyones at
    risk, and no matter how young you are, itjust
    anyone is at risk and it made me realize that I
    am even at a higher risk, a greater risk than
    most.

36
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 dont really
    go out with them as muchI dont know how my
    moms going to feelI cant make any definite
    plans.

37
Relationship Change Perceived Patient as
Vulnerable
  • Challenged long-standing images of strength
  • We call her the Iron Maiden, because shes 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
    whos fragile or delicate.

38
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
  • Its a pillar of your life coming down.

39
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 shes going to be
    in a lot of pain.

40
Relationship Change Perceived Patient as Mortal
(continued)
  • Premature life cycle transition
  • I know Im going to lose her someday. But
    normally, Im going to lose her, but I didnt
    have to lose her this way. You know, with being
    sickbeing -- with cancer.

41
Relationship Change Asynchronous Life
Transition
  • Premature life cycle transition
  • I know Im going to lose her someday. But
    normally, Im going to lose her, but I didnt
    have to lose her this way. You know, with being
    sick.

42
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 were more
    tighter now.

43
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 dont 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 wasnt worth it.

44
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.

45
Relationship Change Increased Protective and
Supportive Behavior
  • Hide worries and fears
  • I didnt 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 aroundI
    felt I needed to be strong for herit 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.
  •  

46
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 worriedand
    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.

47

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.

48
Caregiving Relationship Issues Protect Care
Recipients 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. Im 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
49
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.
  •  

50
Relationship Change Role Reversal Accompanied
Care Provision (contd)
  • Significant life cycle transition
  • My mothers 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
    couldnt....I feel I have a kid, to a certain
    extent, sometimes. Like my mothers my child,
    like I have these obligations to her.
  •  

51
Relationship Changes Dissension among Family
Members
  • I had to disagree with a lot of family members
    about (treatment), but thats okay. And thats
    hard too, because youre trying to find out about
    a disease, and, and also youre getting the input
    from everybody else, and their thoughts, but
    meanwhile, theyre not doing the footwork.
  • My sister is on vacation, she took like a
    month-and-a-half vacation, and it was in the
    middle of my mothers chemo. She calls once in a
    while, but she didnt say, Okay, Im going to
    come backIm going to give you a break, as
    youre working.

52
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.

53
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.
  •  

54
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
55
Caregiving ChallengesCaregiving 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
56
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 its still not final until
    the day were going to actually go out, because I
    dont know how my moms going to feel. ... I
    cant make any definite plans.

Source Raveis, Aging Families and Breast
Cancer
57
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.

58
Caregiving Challenges Chronicity of Caregiving
  • Hes had four or five near-death experiences,
    cerebral hemorrhages, and hes survived through
    all of it. This pattern of alive-not-alive is
    very difficult to cope with. Its gone on for
    too long, and it tires one out, its like a slow
    leak. Im completely exhausted.

Source Raveis, Facilitating Older Spouses
Adjustment to Spousal Death
59
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.

60
Caregiving Challenges Caregivers Are Mainstays
  • I only cried when my mother was not around I
    felt I needed to be strong for herit 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
61
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
62
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
63
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 its tearing
    me apart.

64
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.

65
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.

66
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.

67
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.

68
Consequences of careprovision to the caregiver
69
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

70
What meaning or value is derived from being a
caregiver?
71
Positive Consequences Can Emerge Improved Social
Relationships
  • I think were closer. Sure. But I cant 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.

72
Positive Consequences Can EmergePersonal Growth
  • Its 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 Ill be able to deal
    with another situation...I think that its
    something that has made me very capable.

73
Opportunity for Reciprocity
  • I think, you know, it feels good to help your
    mother through a difficult situation, when shes
    always been there for youShes always say Oh,
    dont come, its too much, its too much. And
    Id say Mom, you dont get what you dont give.
    Youve given me so much, now let us give it
    back. And so its been nice to be able to
    help her.

Source Aging Families and Breast Cancer, VH
Raveis
74
How can health professionals help?
75
Caregiver Needs The 3 Rs
  • Resources - Information, education, training,
    case management
  • Respite Time away from care demands, down-time,
    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

76
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
77
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
78
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
79
Recognition of the costs
  • People dont 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 dont consider the
    guy behind the gun.

Source Facilitating Older Spouses Adjustment
to Spousal Death, VH Raveis
80
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

81
Enable Discussion of Illness Concerns
  • Be available and willing to address family
    concerns about patients condition and care
  • Provide reassurance that appropriate therapeutic
    and ameliorative measures are being utilized
  • Encourage open communication and facilitate
    opportunities to discuss emerging concerns

82
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 problem-solving skills and
    knowledge
  • Provide them with a more adaptive means of
    attending to any symptoms their relative may be
    experiencing during the disease course

83
Patients benefit from caregiver
intervention/training programs
  • Impact patients health related quality of life
    as family caregivers become skilled at
  • Symptom recognition
  • Improves symptom control
  • Advocacy with health professionals
  • Enhancing adherence to symptom management options
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