JED Levine (JL): Carol, what led you to the cause of
Carol Levine (CL): The family caregiver cause chose me.
After working in medical ethics at The Hastings Center
and then in AIDS policy issues as Executive Director of
the Citizens Commission on AIDS for New York City, I
moved to Manhattan. My husband Howard and I bought
a small house in Dutchess County. Coming back to New
York one icy early-January morning in 1990, the car spun
out and overturned. Howard was very severely brain
damaged but I was uninjured. I spent the next three or
four years struggling with his care — first in an acute
care setting, then in rehab and then at home
— and feeling inadequate at every stage.
I kept asking myself, “What’s wrong
with me?” before I had an “ah-ha”
moment and realized that it wasn’t
about me. Without realizing it, I
had become a family caregiver,
and the system was failing me. So, I
shifted gears. I had been a grantee of
the United Hospital Fund for my AIDS
work so I talked to David Gould, the Fund’s Senior
Vice President for Programs, about taking on a new health
policy issue (and hiring me to direct it). I joined the Fund
in October 1996. My commitment came out of both a
sense of personal frustration and professional realization
that this was an important health policy issue that was not
JL: How have things changed since 1996?
CL: There is more understanding of family caregiving as
a phenomenon, and more individual programs available
—including two new federal programs. However, despite
this, the healthcare system has become so complicated that
it’s harder to navigate. When I show the focus group video
that we did in 1998, we can see that caregivers expressed
many of the same frustrations then as now, but things now
move much faster and people are cared for in more settings,
like short-term nursing homes for rehab. Real recognition
has come on the social service side, so that there are more
support groups and training and education. But on the
healthcare side, relatively little has changed. Family members
are still seen primarily as “visitors” in hospitals, and not as
partners in care. Patients are still being discharged without adequate consultation with and training for their family
JL: Have you looked at the prevalence of caregiving?
CL: It’s a highly variable statistic, because it depends on
how you’re counting, who you’re counting, when you’re
counting and what is defined as “caregiving.” Our estimate
several years ago was that there are over a million family
caregivers in New York City. Personally, I think there are
more caregivers now, although not all are doing the intense,
high-degree involvement of caring for someone with
dementia or managing 24/7 care. The tasks of caregiving
get lumped together and we hear, “Well, 50
percent of people don’t find it so difficult.”
But these may be the 50 percent who
are not doing very much. Ask the 50
percent who are on call 24 hours
a day and you’ll get a different
answer. As the population ages and
home care services and hospital stays
are cut, there will be greater need for
people to take up the slack at home.
JL: We talked earlier about the fact that there are
so many more caregiving alliances, books and articles. It’s
part of the popular culture to think about caregiving. Yet,
despite that, there seems to be very little action politically
or legislatively or concrete family support. How can we
get more attention to this issue and raise the profile of
CL: This is a really good issue and a hard one. The National
Partnership for Women and Families, an advocacy group in
Washington, is launching a campaign to do just that, bringing
together the forces that are supportive of family caregiving
to develop policies and an agenda for change. Lynn Friss
Feinberg, who was at the National Family Caregiver
Alliance in San Francisco, is heading this up. They have a lot
of Washington clout. The problem is that caregiver, aging,
and disability advocates often have very different agendas
and getting them to agree on key items is not easy.
Caregivers themselves are not generally able to be
consistent advocates. They can tell their stories and that’s
effective. But unless the stories are connected to a policy
“ask,” they don’t further the agenda. The health reform
process has not helped much because it’s so focused on access to care and financing. Every time something is
proposed that would be a change in service delivery or a
support for family caregivers, we hear “We can’t afford that.
It’s not the highest priority.”
JL: That’s disappointing.
CL: The one place where there has been some real traction
is in the Veterans Administration. They have a very powerful
case and the families who are taking care of these injured
young men and women have been much more successful.
So, maybe we can learn from them that it’s not a question
of new drugs, it’s basic support that you would need for
a long-term caregiving situation. It’s harder to get people
excited about that.
JL: How does the element of cognitive impairment affect
CL: It changes the dynamic of the caregiving relationship.
It’s not just the loss of memory but the change of personality.
I experienced this with my husband who did not have
dementia, but had significant brain damage which made
him very volatile and emotional at times. At other times
he was extremely lucid and witty. It varied. I never knew
when I came home which person I was going to see.
The uncertainty about how to react and how to deal
with other people in the family and community is difficult.
They may not be as sensitive, so you close yourself in
because you don’t want to risk an embarrassing situation
for your family member.
The loss of memory of the things that brought you
together or that defined your relationships makes caregiving
very difficult for Alzheimer’s caregivers. And often there
are other chronic conditions. So, you have all this to deal
with at once. But there is actually more support available
for people caring for someone with Alzheimer’s and
organizations like the NYC chapter have made it possible
to find help. Caregivers dealing with other conditions may
not know where to go.
JL: We’ve worked hard to make sure that people know
that support is available and that our services are free
of charge to family caregivers. One of the things we
frequently hear from families is “I wish I knew about you
five years ago.” There are still a large number of people
out there who don’t know where to start — don’t know
where to go for help.
CL: In my case there was literally a car crash. In Alzheimer’s
the car crash is 100 miles away, so you tend to minimize
the possibility. There’s often reluctance to identify that
something is happening, because the change happens
slowly. I frequently hear stories in which a daughter knows
that mom is declining, but when the son comes to visit,
mom is suddenly fine. The son says “I don’t know what
you’re talking about. She seems okay to me.”
JL: Until the son spends the weekend with mom without
his sister. Then he gets it. Whether one is caring for
somebody with a chronic disease or somebody who’s had
an acute episode of an illness or injury, there are multiple
transition points. In some cases it might be a transition
from one stage to the next which requires a different level
of care or a different setting. The family member might
need respite. What kinds of situations and transitions are
most difficult for caregivers?
CL: When there is hospitalization or an emergency room
visit, because you’re dealing with two alien environments
that confuse and disorient people. Going in and out of the
hospital is a very difficult transition. ER and hospital staff
are not trained to recognize the signs of dementia, and it’s
not coded as a reason for admission. They may think the
patient is just being hostile or combative. They may send
the family caregiver out of the examining area, which only
makes the patient more agitated.
JL: The crisis nature of transitions makes them more
CL: Transitions make it necessary for everyone to rethink
what’s been going on. Is the plan, to the extent there is
one, still working? If not, what does that mean? How do
I have to change? And it reopens initial emotions that you
felt when you first heard the diagnosis. You feel as though
you’re reliving the whole thing again.
Ten years ago we said that transitions were critical, but
unaddressed, points in healthcare. Now it’s the hot issue.
We know that effective transitions can prevent hospital
readmissions and improve care coordination, and there
may be cost savings as well. We also know that ineffective
transitions result in poor patient outcomes and frustration
and anxiety for the family.
JL: We know that hospitalization should be avoided for
people, especially for people with dementia, unless it is
absolutely medically necessary. All too often, a person with dementia comes out of hospitalization in worse shape
than when he or she was admitted.
CL: It’s easy to understand how that happens. Even if
you’re fully competent, hospital procedures don’t always
make sense. If you are not cognitively intact and there
is no one to help you, to explain and comfort you, then
it’s truly disorienting. Adding new medications may cause
side effects and make things even worse.
When my husband was in the hospital, there was
another patient in his room who probably had dementia.
In the evening an orderly came and took the patient away.
The patient didn’t know where he was going. Apparently,
some test was ordered and the machine was available. The
orderly didn’t know that the patient was confused. All he
knew is that he had to bring him down to x-ray. But the
patient was hysterical, “Where are you taking me? What
is happening?” And there was no one to explain what was
JL: What’s the goal of “Next Step in Care”?
CL: “Next Step in Care” is a United Hospital Fund
campaign to improve transitions in care settings —
admissions and discharges in hospitals, rehab units in skilled
nursing facilities and home care agencies for chronically ill,
seriously ill, disabled patients and their family caregivers. We
want to improve the relationships between providers and
family caregivers, and transitions in care is the best place to
start. We developed a series of guides for family caregivers
designed to give caregivers a better way of understanding
what is happening, how to plan for it and how to get their
questions answered. We also have guides for providers
about the key elements of transitions. The tools are on a
website we created — www.nextstepincare.org — and
they’re free, downloadable in English, Spanish and Chinese.
We’ll soon have Russian.
We want to connect directly with family caregivers
and help them use these tools. To do so, we’re working
with groups like the Alzheimer’s Association, Medicare
Rights Center, MS Society, SAGE, and other community
organizations in New York to do trainings, so that their
staff members have a better chance of engaging family
caregivers when they’re not overwhelmed in the ER or
hospital room. It’s a way to prepare people for what might
happen and help them learn about how the system works.
We’re also working with a group of Alzheimer’s experts
around the country who have expressed an interest in or are working on improving hospital staff recognition of
dementia. They will help us develop a provider’s guide
within the next several months.
We are also working with another really important
audience—health care providers. We just finished a
six-month quality improvement collaborative design
group in which fourteen health care providers formed
six partnerships. They tried to understand what is
happening in their own institutions about transitions and
developed interventions, using some of our tools. Based
on these experiences, we’re launching a full-scale quality
improvement collaborative in April with forty to fifty
NYC teams. It’s called TC-QuIC (Transitions in Care-Quality Improvement Collaborative).
JL: The fact that you have the providers on board is a big
CL: We’ve had them on board from the very beginning.
Those in the design group have been very candid, honest,
committed and hard-working. They identified some
barriers, but were good about saying, “This isn’t working;
we’ve got to try another way.” I think the most important
thing that they’ve all learned is that the caregiver perspective
is different from theirs and unless they talk to the caregivers,
they’re not going to get it.
JL: That’s an important message. There are a lot of
assumptions about what caregivers can and can’t do and
what they know about the health care system.
CL: One of our more innovative tools is a caregiver needs
assessment. Not a competency assessment, but a way
for the family caregiver to say, “OK, these are the sorts
of things that may be required. I can do some of them
now or I might be able to do them if you train me. But
there are some I’m never going to be able to do.” It’s a
kind of permission-granting exercise to recognize that not
everybody can do everything.
Part II of our Reflections interview with Carol
Levine will be in our Summer 2010 issue.
Carol Levine, Director, Family Caregiving Project,
United Hospital Fund
— Jed Levine
Executive Vice President,
Director of Programs & Services