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Dr. Majersik: Hi, I'm Dr. Jennifer Majersik. I'm a stroke neurologist at the University of Utah Health Care and the Director of the Stroke Center. My guest today is Dr. Alex Terrill. She's a rehabilitation psychologist in the Division of Occupational Therapy at the University of Utah Health Care. So, Alex, I've been very excited about this topic since I take care of stroke patients and when patients come in, I find we talk all about their high blood pressure and whether they're taking aspirin.

But actually, it's difficult for us to talk about the partnership between the two of them and I can see, although I'm not experienced to this, I can see that there's maybe difficulties between them, but I don't always know how to deal with that with the partners. What have you seen that are some of the problems that happen between couples?

Dr. Terrill: They follow and there are some different broader categories. I'm going to focus more on the psychology or emotion-based problems because that's my area of expertise. But one of the big changes for a certain are changes in mood. So post-stroke depression or apathy is extremely common. It occurs in about a third of stroke survivors. But it's also extremely common and some suggest that it's actually more common in caregivers, up to about 50% of caregivers who experienced depression after stroke. And so these changes in mood, they not only affect the individual but it's been shown that there's a reciprocal effect.

So it's very interconnected. When one person isn't doing well emotionally, the other person isn't doing as well either. And so, for example, if you have a caregiver who is depressed, they will have a harder time doing some of the caregiving, having hard taking care of themselves on their own needs and this can actually increase the likelihood that the person who had the stroke will be hospitalized.

Dr. Majersik: I've also seen data saying that the caregivers health themselves is compromised and I somewhat assume that this is because they stopped going to appointments for a breast cancer screening or to get their own cholesterol checked and they're not out socializing as much.

Dr. Terrill: Yes.

Dr. Majersik: Sometimes, I do talk to my patients' spouses about that. "Are you taking care of yourself?" because I worry and I can tell that they probably aren't.

Dr. Terrill: That's great, yeah. We see that all the time and it's something that the message that we are trying to spread is that, again, the caregiver kind of . . . everything focuses on the patient and, of course, they are too and they want to help. Sometimes they don't know what to do, but it's exhausting and they often neglect their own needs in terms of taking care of their health. Just socializing, getting some social support and we believe that that also contributes to depression is that their social circle shrinks because they're not able to get out or will not get out.

Dr. Majersik: So if a spouse is looking for more help in trying to understand his or her new role, where should they go? Should they go to the usual caregiving sources of support or is there something else that they should do?

Dr. Terrill: That's a good question and I think it's very individually based. I mean, certainly, getting resources for caregivers in general could help with some of the more general issues that come up. How do you find time to do some stress management or take care of yourself? And there are some resources out there. There are caregiver support groups specifically. But there's relatively little that's out there for stroke caregivers, per se, and one of the things that is unique or there are actually several things that are very unique to caregivers for stroke survivors that might not be the case in other things like old-timers or spinal cord injury, for example, along with maybe some physical changes that might happen after stroke.

You do have kind of that emotional piece, the emotional component, changes in cognitions. So the way that you're thinking changes the way that you communicate. And if you think about couples talking to each other, and if one of those partners in the couple isn't able to communicate effectively, how difficult that is. And that's a fairly unique thing, I would say, to partners of stroke survivors.

The other thing is that it does happen very suddenly and, often times, I would argue that practically no one is prepared for something like that when it does happen. And so you have that sudden transition to where you're taking on that role and whereas initially, you might have people rallying in helping you, social support at the hospital, once you're back out there, there's few and far between. Things drop off and it's good to know where to go.

Dr. Majersik: What are you doing now to try to help the situation? It sounds like an area that you're obviously very interested in and I'm hoping we're going to learn more in the next few years about how to help spouses and caregivers.

Dr. Terrill: Yes, so one of the things that I'm working on is actually creating an intervention that is done by both partners in the couple. And rather than just focusing on kind of educational pieces for a caregiver, which is something that's more traditionally done, we actually have them both participating in activities on their own and the activities that they do together. So we like for them to have that shared experience and we have them do positive psychology-based activity. So things like expressing gratitude, working on relationships, acts of kindness, savoring. I mean there are all kinds of things that they can work on. And it really kind of helps to give that structure to ways that they can interact and share some positive moments, make that time.

And that's something that we're hearing quite a bit is that after stroke happens, you kind of flail. You just survive and you want to help each other, but you don't know how and you stop interacting altogether. So and that's really a shame because your partner can be one of your biggest sources of strength and resilience and that's mutual, for both the person who have the stroke and the caregiver.

updated: July 29, 2020
originally published: January 20, 2016

Interviewer: Somebody you know or love is having a stroke, you need to call 9-1-1 immediately. We'll tell you exactly why, coming up next on The Scope.

Announcer: Medical news and research from University of Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Interviewer: Dr. Jennifer Majersik is the director of the University of Utah Stroke Center and a stroke specialist. And this is the message that I hear you say all the time, "If you think you or somebody you know is having a stroke, call 9-1-1 immediately." Why is it so important that you call 9-1-1 so immediately?

Dr. Majersik: Yes, this is the heart of what I do is to try to get patients to understand just how important it is. In this country, there are about 800,000 strokes a year. And about 650,000 of them are ischemic strokes, maybe a few more, and only maybe 5% of them get acute treatment for stroke. The other 95% do not. And the vast majority do not because they do not get to the hospital fast enough. So we have two major types of treatment now that we can give quickly. One is intravenous, so via an IV, as it's usually called, it's a medicine called TPA and we can give that out to about three hours, sometimes four and a half hours.

Interviewer: And it makes a huge difference in the person's life afterwards.

Dr. Majersik: Yeah, it reduces disability, it makes patients walk again, talk again, go back to their lives, work, play, etc., all the things that are important. Some of the patients who are having a really severe stroke, so the kind that will land you in a nursing home if it doesn't get better or perhaps hurt you to the point of not surviving, those strokes we now have very effective treatment for as well.

2014 and '15 were landmark years for new trials that came out showing the efficacy, so the ability to work, for large-artery strokes, so these are the big ones. Nowadays we have physicians who are known as neuro-interventionalists and they can take a catheter and go into your leg and go on up to the brain and be able to pull clot out and, again, give you back that function so that the stroke is no longer affecting you like it was.

Interviewer: So it seems like a no-brainer, bad pun not intended but it just kind of came out. Why don't people call 9-1-1 after a stroke then?

Dr. Majersik: They are afraid. Some people think that the ambulance will come, will embarrass them. They don't want their neighbors knowing about it. To that fear, I usually say, "Call 9-1-1 anyway, it doesn't matter what the neighbors think, and if you're really that concerned, tell them to not run their sirens and nobody will know."

Interviewer: And this is stuff actual people have told you after they've come in for stroke that blows my mind.

Dr. Majersik: Absolutely people tell me that. Also, there's been studies on it, people-- we've asked, "Why didn't you call 9-1-1 or why wouldn't you call 9-1-1 in this situation?" And these are the kinds of things people tell us. So they're afraid of embarrassment. They're also afraid of being wrong, so what if I'm not actually having a stroke, I'm whatever, having a migraine or Bell's Palsy. And I think it's really hard as a layperson, and sometimes even as a physician, to sort those out. And so I don't think it's worth the risk. I think our lives are too important to be worrying about those kinds of fears. And I think we should do the best thing, which is to call 9-1-1 and get to the hospital and let the professionals sort it out.

And then the last thing. But it's just that people don't even recognize that they're having a stroke. Which we've talked about before, but again goes back to recognizing the signs and symptoms of a stroke.

Interviewer: And sometimes it's not like a heart attack where somebody grabs their head like, "Oh, I'm having a stroke," it's a very quiet thing with very subtle signs that I think all of us, as humans, should know because time is brain.

Dr. Majersik: Right. So the stroke patient doesn't call out, they don't say they're in pain, they just lose function. So the function that they lose could be vision, or it could be arm strength, or face strength, leg strength, sensory, or balance, or speech. I almost forgot speech, the most important one, perhaps.

Interviewer: And the acronym you use is FAST.

Dr. Majersik: Right, so we always use FAST. "F" for face, "A" for arm, "S" for speech. And so if the face is drooping, or the arm won't hold up when you ask someone to hold it up, or speech, if they can't make or understand speech. And all of these should start suddenly. These aren't signs or symptoms that come on slowly, they should come on over just a couple of minutes.

Interviewer: So of all the medical conditions, if you believe that you're having any sort of symptom of a stroke, don't go to the computer and Google and figure it out, don't waste any time whatsoever. The first, and only, thing you should do is dial 9-1-1. And what happens if the person's wrong?

Dr. Majersik: If the person's wrong, they'll come and find out they're having a migraine, perhaps, and hopefully they'll feel better and we'll send them home. Or maybe something else is going on, but I think it's still the most appropriate thing to do. We certainly, on the physician end or the nursing end, we're not upset that you came to the ER. We're not annoyed by extra patients. This is what we do every day and we really enjoy our job. And so whether someone's having a stroke, or if they're not having a stroke I have the joy of telling them, "You're going to be okay."

Interviewer: I guess, you know, we go to the ER for a broken arm, so the repercussions are a lot less worse than the potential repercussions of a stroke, so why would you hesitate?

Dr. Majersik: Right. Absolutely.

Interviewer: What's your takeaway? What's the final thought here?

Dr. Majersik: I think the final thought is that stroke used to be a field that we thought there were no treatments. And I think that still pervades in our communities, that if you're having a stroke just curl up and don't worry about it. But we actually have great treatments now. You just have to get to the hospital fast to receive them.

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