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?
Post-Stroke Depression
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.
Caregiver Health
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?
Resources for Caregivers
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.
Positive Psychology in Stroke Care
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
