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Caregiving for Persons with Traumatic Brain Injury While Sheltering in Place for COVID-19

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Kessler Foundation Podcast Transcript: Caregiving for Persons with Traumatic Brain Injury while Sheltering in Place for COVID-19 Recorded April 2020 Listen to it here. NANCY [music] The better the person with the brain injury functions, the better the entire CHIARAVALLOTI: 00:06 household can function. ANNOUNCER: 00:12 Caregiving for persons with traumatic brain injury while sheltering in place for Covid- 19. Caregiving for a loved one who has experienced a traumatic brain injury can be stressful in the best of times, let alone, during a pandemic. In this podcast, Dr. Erica Weber hosts a conversation about traumatic brain injury caregiving in the time of Covid-19 with experts from Kessler Foundation. Listen in as Dr. Weber introduces our guests. ERICA WEBER: 00:43 Hi, and welcome to the next segment of our podcast series focused on critical issues faced by the disability community in the times of Covid-19. I am Dr. Erica Weber, a research scientist in the Center for Traumatic Brain Injury Research here at Kessler Foundation. And I'm joined today by two of my colleagues for a conversation on caregiving for a loved one with a traumatic brain injury while under stay-at-home orders. So I'm here with Dr. Nancy Chiaravalloti, who is the director of the Center for Traumatic Brain Injury Research at Kessler Foundation, as well as the director for the Center for Neuropsychology and Neuroscience Research, as well as Dr. Denise Krch, who is a research scientist in the Center for TBI Research, and she is currently conducting research on supports for TBI caregivers. So thanks to you both for joining us today. CHIARAVALLOTI: 01:29 Happy to be here. KRCH: 01:29 Thanks for having me. WEBER: 01:31 Sure. So to start off, Dr. Chiaravalloti, could you lay a foundation for us of what is a traumatic brain injury and how does it affect the person and a system? CHIARAVALLOTI: 01:41 So a traumatic brain injury is any injury to the brain the occurs as a result of an external force hitting the head. So it could be the result of a car accident or a fall or a sporting event. That's what a traumatic brain injury is. And traumatic brain injuries can be graded from being more mild in nature, similar to a concussion, to the very severe traumatic brain injuries where the person's life may be at risk when they're first injured. Traumatic brain injuries have a period of recovery and rehabilitation, and throughout that time, the person undergoes therapies to try to maximize their functioning. And we talk about rehabilitation as really being a lifelong endeavor after a traumatic brain injury because there are-- in the more moderate to injuries, there are deficits that a person is dealing with for the rest of their lives, and those deficits can have an impact on everyday functioning. WEBER: 02:43 So this seems like something that is really going to be a longer-term issue that people are dealing with, not only the person with the TBI, but also the people in their lives KesslerFoundation.org 1 of 13 Kessler Foundation Podcast Transcript: Caregiving for Persons with Traumatic Brain Injury while Sheltering in Place for COVID-19 who are maybe charged with helping them achieve their maximal functioning and living their best life possible. CHIARAVALLOTI: 03:03 That's very true. A traumatic brain injury is something that someone is dealing with for the rest of their lives, and very often, it has a tremendous impact on the family and friends, particularly, in situations where assistance is necessary in order to carry out daily activities. And those situations, we talk about caregivers or care partners who are very involved in the person's everyday life and are really very, very important to how that person functions daily and how they're able to carry out their daily activities. WEBER: 03:38 And now, Dr. Krch, so I know that you've been doing some research on this, and it's an interest of yours to know how being a caregiver of someone with a TBI is critical to that person and how it might really be a need of their own support systems. Can you tell us a little bit about what you've been working on and what you know about caregiving after a TBI? KRCH: 04:07 There are a number of things that shift for a caregiver after their loved one goes through an injury and comes home, and there are changes in roles that happen as a matter of the injury. The coping skills that the individual had that may have been very effective for them prior to the injury may not be adequate after the loved one's injury when they're dealing with not only the demands placed on them previously such as continuing to maintain employment, but also taking on those added new responsibilities. So they may find that they need to look for and seek new ways to manage stress better. WEBER: 04:54 That sounds like that would be a whole lot of juggling, both from a practical standpoint. I'm sure a lot of people can identify with the idea of not having enough hours in the day, but when all the sudden you're adding on new tasks. And then the emotional strain of having to cope with the fact that those tasks weren't really what you had been planning on doing. And not to mention, the stress of seeing your loved one change after a traumatic brain injury. KRCH: 05:26 Yes. That's true. And often, the caregiver really just wants to maintain a good quality of life for both them and their loved one. So really, at the heart of all of this is this primary love for the survivor and wanting to make sure that they are reaching their maximum potential in life, but also maintaining a good quality of life for themselves. It's a really challenging time to make sure you're meeting those types of goals. WEBER: 05:55 So with all of these new roles, it probably becomes very evident of what the person with the traumatic brain injury is maybe no longer as capable of. Dr. Chiaravalloti, could you give some insight into what types of problems people tend to have after a traumatic brain injury that does impact their everyday functioning? CHIARAVALLOTI: 06:14 Following a traumatic brain injury, people who are impacted by the injury, the individuals that sustain injury is very often present with cognitive deficits, and those deficits have a substantial impact on their everyday life. So when I use the word cognitive deficit, what I'm referring to are all the skills that enable us to think and interact with our environment. So paying attention to a conversation or manipulating KesslerFoundation.org 2 of 13 Kessler Foundation Podcast Transcript: Caregiving for Persons with Traumatic Brain Injury while Sheltering in Place for COVID-19 information in your mind. So as an example, if you're going shopping and you need to figure out what 20% off is, that's a cognitive manipulation. Remembering a new person's name when you meet someone for the first time or remembering to take medicine at a certain point in time, those are all cognitive tasks that we have to do every single day. So they're very reliant on our brains to be able to effectively carry out those procedures. CHIARAVALLOTI: 07:09 When someone has a traumatic brain injury, those daily-life tasks can actually be very difficult, and that has a substantial impact on the home environment. So as an example, one of the major areas of cognitive dysfunction after traumatic brain injury is executive functioning. When I use the term executive functioning, I'm talking about organization, problem-solving, planning, all those things that you do every day to carry out household tasks. So someone with a traumatic brain injury that has an executive functioning deficit might have difficulty in a situation where they don't have a lot of structure. And in a home environment, that's very often the case. So they're not able to necessarily say, "Okay. Well, first, when I get up, I'm going to exercise, and then I'm going to have breakfast, and then I'm going to do some reading, and then I'm going to do work that I have to do for the day." They may not be able to do that, and that can have a substantial impact on their productivity for the day. CHIARAVALLOTI: 08:16 So that's one area of deficit. Another area is memory. Memory is a major problem following traumatic brain injury. And if someone has trouble remembering things, that can have a substantial impact on how they're able to function in their daily environment, because in reality, we have to remember a lot of new information every single day. WEBER: 08:34 Well, and what's really striking me about what you're saying with these cognitive deficits is that they may not be overly apparent to people who are, let's say, looking at the person in a store. They sound like they might fall under that category of having a "invisible disability" where it may not be as obvious. But to the person who is living with the person with the TBI, the change has got to be really noticeable, because these are our daily tasks that may not have given them a second thought and there may not be a change in the person's physical appearance or ability to walk.
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