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DAVID R. MARKS, MD: Hi, and welcome
to our webcast. I'm Dr. David Marks. When someone close to
you suffers a stroke, the emotional impact can be tremendous, but as anyone
caring for a loved one after a stroke knows, the psychological challenges
are only half of the story. The responsibility of helping someone
through recovery and rehabilitation can be extremely demanding, and there's
a lot to learn. Who do you call in emergency situations? How
do you find the right kind of care for your loved one? How do you
pay for it all? Those are just some of the questions.
Joining us today to talk about these and other questions
are two experts. First is Dr. Richard Zorowitz. He's the director
of stroke rehabilitation at the University of Pennsylvania. Welcome.
RICHARD ZOROWITZ, MD: Thanks.
DAVID R. MARKS, MD: We also have Dr. David Alexander.
He's the medical director of the Daniel Freeman Rehabilitation Center,
which is in Los Angeles, California. Thanks for being here.
DAVID ALEXANDER, MD: Thanks for inviting me.
DAVID R. MARKS, MD: Family involvement is crucial,
but when does it start?
DAVID ALEXANDER, MD: Generally it starts right at
the time of the stroke, and it's often a family member who discovers or
helps the patient who's having a stroke get to the emergency room and get
to the hospital. It continues, really, essentially through the whole
process, through the acute side of the hospitalization, as well as into
the rehabilitation phase and, of course, for the rest of the patient's
life.
DAVID R. MARKS, MD: There comes a point when a person
with a stroke goes home. How do you know that the person there who
is supposed to give care actually can be an effective caregiver?
RICHARD ZOROWITZ, MD: First, in the acute care hospital,
we have to determine functionally how that patient is managing, and then
we have to go and interview the family and see whether or not they can
care for that patient at that particular level. If they can, the
patient probably can go home safely. If they can't, then we probably
will consider them for a stay in rehabilitation. Once they're in
rehabilitation as an inpatient, after we have a chance to evaluate them,
we'll get the family to come in to participate in therapies, learn what
the patient can do, learn what the patient can't do, learn what they should
do and learn what they should not do in order to help that patient.
Then, with further training, the patient then can be cared for by the family,
and we feel that everybody is safe and the family feels that they're comfortable
enough to take the patient home, the patient then can go home.
DAVID R. MARKS, MD: When you say "we," who's actually
making that determination?
RICHARD ZOROWITZ, MD: "We" really refers to the
team. It's the rehabilitation physician. It refers to the nurses,
it refers to the physical therapists, occupational therapists, speech pathologists,
neuropsychologists, recreational therapists, and anybody else that we bring
in.
DAVID R. MARKS, MD: You mentioned training, Dr.
Alexander. What kind of training does a family member actually have
to have, if any, before they are ready to take their loved one or friend
or family member home with them?
DAVID ALEXANDER, MD: We train families in a variety
of things: the proper technique of how to help someone either walk or make
a transfer to the wheelchair to the bed. We train them in fall recovery,
if the patient does fall, how to help get them up. We train them
in how to help the patient help themselves with their daily activities
of getting dressed and getting to the bathroom, getting to the toilet,
and we train the family in any type of therapy techniques they may need
for either language function or for physical therapy techniques.
DAVID R. MARKS, MD: This is a big responsibility.
It sounds very stressful. Is there anything you do otherwise to prepare
a person for this?
RICHARD ZOROWITZ, MD: We try to give them as much
training as we can in the rehabilitation facility. What we also do
is have them come in if we see that there are potential stressors that
might make care difficult. We'll have them start seeing the psychologist
in the rehabilitation facility so we can start dealing with some of those
things. What we can also do is make referrals to them to go to support
groups, both for patients, through support groups there, as well as caregiver
support groups, so that when the patient and the family go home, the caregiver
doesn't believe that they are by themselves. They can be with other
people. This is a wonderful way to network so that they can find
out ways that other people are dealing with some of the same issues that
they are dealing with.
DAVID R. MARKS, MD: What about the incidence of
depression in caregivers? Do you see this a lot?
DAVID ALEXANDER, MD: Yes. It's a very stressful
job, being a caregiver, and there is a higher incidence of depression.
There's a higher incidence of medical problems. People tend to take
so much care of the patient who had the stroke that they neglect their
own care. They don't get to see the doctor. They don't take
their medications properly, or they overstress themselves physically.
And depression -- they are more frequently depressed than other people
because they're dealing with this new substantial life change for themselves.
RICHARD ZOROWITZ, MD: What's even more interesting
is that there are some recent studies that even suggest that caregivers
who are stressed in the way that Dr. Alexander has referred to actually
might even have a higher rate of death than caregivers who are taking care
of themselves and dealing with some of the stressors of caring for somebody
with a disability.
DAVID R. MARKS, MD: There are some recent studies
that have just come out about that, too, and the question is, with all
these support groups, what it comes down to is the caregiver is still there.
Is there a way to get them out of the house? Is there a way to get
them relief so that they can take an hour and go shopping or do whatever
they need to do?
RICHARD ZOROWITZ, MD: We encourage a respite from
the duties of being a caregiver. There aren't many organized programs
that can do things like that, but obviously, the larger the social net
of the patient, the more friends and family they have that are willing
to be helpful, the primary caregiver really should try to take a break
and try to get out and take care of themselves.
DAVID R. MARKS, MD: What about the cost, the cost
associated with caring for someone?
RICHARD ZOROWITZ, MD: Costs can be somewhat prohibitive
for some of these patients, whether it would be for several hours a day,
if they need live-in help, all of this costs, and if they don't have the
financial resources, then it makes it much, much more difficult.
Sometimes, if patients and families can reach out, maybe, to their churches
or synagogues and try to find more informal networks in which maybe they
can hire somebody for somewhat less expense than it might be through a
home health agency, but remember that if you do this, that these are people
who may not necessarily be as well-trained as some of the caregivers that
come from some of these agencies, so you have to take all of that into
consideration, as well, and training would become important.
DAVID R. MARKS, MD: Does insurance cover it at all?
RICHARD ZOROWITZ, MD: Since that is really considered
custodial care, usually it doesn't.
DAVID R. MARKS, MD: This seems like a big gap in
our coverage scheme, in our insurance scheme, because there are a lot patients
who have strokes out there who need support and help.
DAVID ALEXANDER, MD: There are, and it's often a
major shock to families when they realize that a lot of these things aren't
covered by Medicare or their insurance, and it can be a very big financial
burden.
RICHARD ZOROWITZ, MD: What I think is really very
interesting is that under Medicaid, you might be able to get paid to be
in a nursing home, but to get paid to be home, which, really, is a lot
less expensive, it's usually left to the family.
DAVID R. MARKS, MD: Here's an interesting question.
What about long-term care insurance? Would they cover something like
that? It would be the patient's long-term care insurance.
DAVID ALEXANDER, MD: I think many more people are
interested in that. I don't know that much about it, but I believe
that there is insurance you can buy to cover that gap that we're talking
about, where patients may need assistance at home, things that aren't traditionally
covered by insurance, and if they bought the insurance ahead of time, that
may be a helpful financial thing.
RICHARD ZOROWITZ, MD: However, it's important just
to make sure that they read through what they are purchasing, because it
may not be necessarily what they expect it to be.
DAVID R. MARKS, MD: If a caregiver is having trouble
psychologically, physically, emotionally, where would they turn for help?
RICHARD ZOROWITZ, MD: They can probably turn back
to the rehabilitation team that served the patient, because we will have
some of those resources that the patient's caregiver might need.
It might mean going to a psychologist and trying to deal with some of those
issues themselves. It might mean going to a support group for caregivers
in order that they can network with other people, but I think this is a
good place to start in order that we can identify what is the problem and
how we can potentially solve it.
DAVID R. MARKS, MD: Are there any national organizations
that they can call to try to find maybe a local chapter or people who are
in the same situation?
DAVID ALEXANDER, MD: Yes, there are. National
Stroke Association is one. The American Stroke Association is another.
Most places have either local stroke chapters -- For example, where I live,
there's a Southern California Stroke Association -- or hospitals or rehabilitation
facilities often have their own support groups.
RICHARD ZOROWITZ, MD: Another place that they might
want to look is an organization called Well Spouse, which is based here
in New York that may actually have some chapters nationwide for caregivers
to become a part of.
DAVID R. MARKS, MD: Thank you both for being here.
A very underappreciated problem, I think. It's good to get the word
out. Thank you for joining our webcast. I'm Dr. David Marks.
We hope we provided you with some very helpful information. Good-bye.
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