patients, providers and the family: the dynamics of geriatric care in the 21st century victoria h....

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


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


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

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.”


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.”


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.”

“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: Caregiving Relationship Issues: Differentiating Personal NeedsDifferentiating Personal Needs

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-a-half 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.”


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.”


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.”


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.”


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.”


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.”


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.”


How can health professionals help?

Caregiver Needs: The 3 R’s

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

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.”


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.”


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.”


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 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

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

patients, providers and the family: the dynamics of geriatric care in the 21st century victoria h....

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