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.