Caring for a person with a neurodegenerative disease can be extremely challenging. Beyond the potential physical exhaustion caregivers may experience, they also may experience emotional and psychological changes when having to take care of someone else, and it is a potential problem that needs to be addressed.
In this podcast, Deborah Backus, director of multiple sclerosis research at Shepherd Center and co-author of the paper “Coping With Caregiver Burnout When Caring for a Person With Neurodegenerative Disease: A Guide for Caregivers,” discusses the importance of recognizing and addressing the impact of caregiving.
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The Importance of Caring for Caregivers
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Learn more about Deborah Backus, PT, Ph.D., FACRM
Deborah Backus, PT, PhD
Deborah Backus, PT, Ph.D., FACRM, is the director of multiple sclerosis research at the Eula C. and Andrew C. Carlos Multiple Sclerosis (MS) Rehabilitation and Wellness Program at Shepherd Center. She is president-elect of the American Congress of Rehabilitation Medicine (ACRM). Dr. Backus has 30 years of experience as a rehabilitation clinician, educator and researcher. As part of the MS Rehabilitation and Wellness Program at Shepherd Center, Dr. Backus coordinates research efforts to study the health and wellness needs of people at varying stages of MS.Learn more about Deborah Backus, PT, Ph.D., FACRM
Transcription:
The Importance of Caring for Caregivers
Melanie Cole (Host): Caring for a person with neurodegenerative disease can be extremely challenging. Beyond the potential physical exhaustion caregivers may experience, they also may experience emotional and psychological changes when having to take care of someone else. It's a potential problem that needs to be addressed. My guest today is Dr. Deborah Backus. She's the director of Multiple Sclerosis research and Shephard Center, and coauthor of Coping with Caregiver Burnout When Caring for a Person with Neurodegenerative Disease: A Guide for Caregivers. Welcome to the show, Dr. Backus. So, let's talk about caregiving because whether it's neurodegenerative disease or whether it's Alzheimer's or dementia or whatever it is, there's a certain amount of stress that goes with being that caregiver. So speak about the stress that caregivers experience.
Dr. Deborah Backus, PT, PhD, FACRM (Guest): Well, thank you for having me and for asking that important question, Melanie. Caregivers are tasked with helping somebody, in this case, somebody with different levels of cognitive motor or motor disability to live their daily life which means that they tend to often be at their beck and call or having to be available to help with the simplest of activities ranging from helping them eat their food, get them dressed, even scratch their nose if they can't reach their nose -- so that they're constantly on call, often having to put their own needs on hold so that they can care for somebody that they, you know, that they love, and so it puts a large burden on their daily activities.
Melanie: Well, it certainly does and as you say, they put their own needs on hold. What do you want caregivers to know? I'd like to get right into the meat of this part of it about dealing with that stress and when to seek support and get extra help from loved ones and how to deal with sometimes feelings of anger at the person that's ill for the fact that they have to spend their life caring for them now.
Dr. Backus: That's right. They have to -- they do have to take care of themselves so that means that they need to meet their needs if that means stepping away and getting some exercise. They need to be able to do that. Having time with people that they can relate to without having to worry about attending someone else's needs -- that's really important. Finding support groups that, you know, again, have people that maybe are going through the same situation who they might be able to talk with and share with and get ideas about how to take care of themselves because it's definitely been shown in the literature that people who are caregivers have a greater risk of illness; have a greater risk of dying sooner. It impacts their jobs and so if they don't do those things, they don't take care of themselves and take the time to do that then they're at risk of problems too, and quite honestly, then that doesn't benefit anybody. Not themselves or the person that they're caring for.
Melanie: So, what are some signs of caregiver burnout for other people to notice when they know that someone is caring for someone?
Dr. Backus: So, it might be overall fatigue and malaise. You know, just being tired, not feeling well. It could be shortness of temper or irritability. It could be forgetfulness or not taking care of important daily activities. Those are all things that just in general indicate stress, but certainly in somebody who's providing care 24/7 that might be something that another person could take note of and offer to get them help for to give them some relief.
Melanie: When we're talking about the psychological well-being of a caregiver, Dr. Backus, sometimes they will refuse -- not refuse -- but be reluctant to give up some of that care to a support system and what do you want them to know about accepting help?
Dr. Backus: That is difficult. And it comes back to, again, if they don't take care of themselves, they can't take care of the person that they're trying to care for. They can't provide the support that they need to provide and so what -- you know, this document that you're referring to -- it offers some of the resources that they could tap into, and perhaps what they need to do is take this page and use it to help educate other people about their needs or find other resources that will educate about what the person is going through. So, for instance, if they are caring for somebody with Multiple Sclerosis, then helping somebody else in the family understand what the needs are for the person with Multiple Sclerosis might then make them feel more comfortable about leaving for a couple of hours. If they just find the right resources to help educate other people, then they'll feel more comfortable hopefully to relinquish some of that control and to do what they need to do for themselves.
Melanie: What about things when you talk about what they need to do for themselves -- things like relaxation techniques? Or even seeing a counselor themselves to work out some of these feelings that they might be experiencing?
Dr. Backus: So, that often times is very difficult because they need to step away, but they have to have a support system in place so that they can do that. I mentioned exercise before, getting time away. They need to have that support system that knows how to take care of the person that they're caring for, so they can do it, and there is plenty of evidence to demonstrate that taking that time and doing what means the most to them because for some people maybe it is exercise or maybe it is yoga. Maybe it's having time just to read a book or participate in some sort of relaxing activity. Those things have to happen in order for them to feel better, and then maybe they can be more effective in providing the care they're providing.
Melanie: How important do you think support groups are -- so that they would meet if they do have somebody to watch their loved one while they go to a support group, but meeting with people who are going through the same thing?
Dr. Backus: Yeah, so, I think it's important -- what I like about this page is that it shows the variety of resources that are available to them. Support groups is one that might be useful to them, and we have a number of support groups listed that, you know, range from respite care where they might get somebody to come in so that they can leave that have educational programs that can be used to educate themselves or they might refer somebody else in their support system so that they can learn about what they need to do, and they have sessions where they can just go in and get webinars related to caregiving or about education on nutrition or advocacy, and they have pure old regular support groups where they can go in and talk for an hour and say this is what's going on -- has anybody dealt with it? So, they have a whole host of things that can meet different people's needs. Maybe somebody doesn’t feel comfortable going to a support group, but they'd like to get the education so that they can help the members in their support network understand better so that they can leave them in their care and go and have a few hours a week to themselves. You know, everybody's different and that's what's so nice about these other organizations is they have that wide range of resources available.
Melanie: And just in summary, Dr. Backus, what would you like caregivers to know about what you're doing at Shepard Center that can also help them when they are caregivers and maybe experiencing burnout?
Dr. Backus: That's a good question. So, we do find that some of our research that we're doing as well as the programs that we offer can decrease the burden on caregivers by helping people with MS, for instance, be stronger, understand how to take care of themselves, and have their support system that will help decrease the burden on the caregiver themselves. You know, if the person with MS is educated, feels empowered and confident to take care of themselves, then the caregiver will feel better and so maybe there can be those times when they can step away and they can, you know, take care of themselves or maybe when they're with the person, their loved one, that they're trying to care for, if that person gets stronger and can feed themselves, they can have a meal together that doesn’t require them feeding somebody, and they can just spend regular time together, so, you know, we attack it from both angles. You know, the person themselves with MS, but also the caregiver, and we attack the whole issue not just from a physical standpoint but from an emotional, cognitive standpoint to try to help people with MS be empowered to take care of themselves and everybody benefits.
Melanie: And wrap up with your best advice for caregivers about maintaining their own psychological and physical well-being so that they can take care of their loved one?
Dr. Backus: I just – I really can't stress enough that you pretty much summarized it Melanie that they need to take care of themselves that they need to identify the problems in themselves or, you know, when they are having issues and communicate that whether it's to the healthcare professionals that's helping them and their loved one or their support network or an external support group to maintain their physical well-being, so it's not just about the person they are taking care of. Eating a balanced meal, getting exercise but that they are doing that themselves and getting that support that they need. It's very, very critical to both them and the person they’re taking care of.
Melanie: Thank you so, Dr. Backus. It's great information. You're listening to Shepard Center Radio and for more information, you can go to shepard.org. That's shepard.org. This is Melanie Cole. Thanks so much for listening.
The Importance of Caring for Caregivers
Melanie Cole (Host): Caring for a person with neurodegenerative disease can be extremely challenging. Beyond the potential physical exhaustion caregivers may experience, they also may experience emotional and psychological changes when having to take care of someone else. It's a potential problem that needs to be addressed. My guest today is Dr. Deborah Backus. She's the director of Multiple Sclerosis research and Shephard Center, and coauthor of Coping with Caregiver Burnout When Caring for a Person with Neurodegenerative Disease: A Guide for Caregivers. Welcome to the show, Dr. Backus. So, let's talk about caregiving because whether it's neurodegenerative disease or whether it's Alzheimer's or dementia or whatever it is, there's a certain amount of stress that goes with being that caregiver. So speak about the stress that caregivers experience.
Dr. Deborah Backus, PT, PhD, FACRM (Guest): Well, thank you for having me and for asking that important question, Melanie. Caregivers are tasked with helping somebody, in this case, somebody with different levels of cognitive motor or motor disability to live their daily life which means that they tend to often be at their beck and call or having to be available to help with the simplest of activities ranging from helping them eat their food, get them dressed, even scratch their nose if they can't reach their nose -- so that they're constantly on call, often having to put their own needs on hold so that they can care for somebody that they, you know, that they love, and so it puts a large burden on their daily activities.
Melanie: Well, it certainly does and as you say, they put their own needs on hold. What do you want caregivers to know? I'd like to get right into the meat of this part of it about dealing with that stress and when to seek support and get extra help from loved ones and how to deal with sometimes feelings of anger at the person that's ill for the fact that they have to spend their life caring for them now.
Dr. Backus: That's right. They have to -- they do have to take care of themselves so that means that they need to meet their needs if that means stepping away and getting some exercise. They need to be able to do that. Having time with people that they can relate to without having to worry about attending someone else's needs -- that's really important. Finding support groups that, you know, again, have people that maybe are going through the same situation who they might be able to talk with and share with and get ideas about how to take care of themselves because it's definitely been shown in the literature that people who are caregivers have a greater risk of illness; have a greater risk of dying sooner. It impacts their jobs and so if they don't do those things, they don't take care of themselves and take the time to do that then they're at risk of problems too, and quite honestly, then that doesn't benefit anybody. Not themselves or the person that they're caring for.
Melanie: So, what are some signs of caregiver burnout for other people to notice when they know that someone is caring for someone?
Dr. Backus: So, it might be overall fatigue and malaise. You know, just being tired, not feeling well. It could be shortness of temper or irritability. It could be forgetfulness or not taking care of important daily activities. Those are all things that just in general indicate stress, but certainly in somebody who's providing care 24/7 that might be something that another person could take note of and offer to get them help for to give them some relief.
Melanie: When we're talking about the psychological well-being of a caregiver, Dr. Backus, sometimes they will refuse -- not refuse -- but be reluctant to give up some of that care to a support system and what do you want them to know about accepting help?
Dr. Backus: That is difficult. And it comes back to, again, if they don't take care of themselves, they can't take care of the person that they're trying to care for. They can't provide the support that they need to provide and so what -- you know, this document that you're referring to -- it offers some of the resources that they could tap into, and perhaps what they need to do is take this page and use it to help educate other people about their needs or find other resources that will educate about what the person is going through. So, for instance, if they are caring for somebody with Multiple Sclerosis, then helping somebody else in the family understand what the needs are for the person with Multiple Sclerosis might then make them feel more comfortable about leaving for a couple of hours. If they just find the right resources to help educate other people, then they'll feel more comfortable hopefully to relinquish some of that control and to do what they need to do for themselves.
Melanie: What about things when you talk about what they need to do for themselves -- things like relaxation techniques? Or even seeing a counselor themselves to work out some of these feelings that they might be experiencing?
Dr. Backus: So, that often times is very difficult because they need to step away, but they have to have a support system in place so that they can do that. I mentioned exercise before, getting time away. They need to have that support system that knows how to take care of the person that they're caring for, so they can do it, and there is plenty of evidence to demonstrate that taking that time and doing what means the most to them because for some people maybe it is exercise or maybe it is yoga. Maybe it's having time just to read a book or participate in some sort of relaxing activity. Those things have to happen in order for them to feel better, and then maybe they can be more effective in providing the care they're providing.
Melanie: How important do you think support groups are -- so that they would meet if they do have somebody to watch their loved one while they go to a support group, but meeting with people who are going through the same thing?
Dr. Backus: Yeah, so, I think it's important -- what I like about this page is that it shows the variety of resources that are available to them. Support groups is one that might be useful to them, and we have a number of support groups listed that, you know, range from respite care where they might get somebody to come in so that they can leave that have educational programs that can be used to educate themselves or they might refer somebody else in their support system so that they can learn about what they need to do, and they have sessions where they can just go in and get webinars related to caregiving or about education on nutrition or advocacy, and they have pure old regular support groups where they can go in and talk for an hour and say this is what's going on -- has anybody dealt with it? So, they have a whole host of things that can meet different people's needs. Maybe somebody doesn’t feel comfortable going to a support group, but they'd like to get the education so that they can help the members in their support network understand better so that they can leave them in their care and go and have a few hours a week to themselves. You know, everybody's different and that's what's so nice about these other organizations is they have that wide range of resources available.
Melanie: And just in summary, Dr. Backus, what would you like caregivers to know about what you're doing at Shepard Center that can also help them when they are caregivers and maybe experiencing burnout?
Dr. Backus: That's a good question. So, we do find that some of our research that we're doing as well as the programs that we offer can decrease the burden on caregivers by helping people with MS, for instance, be stronger, understand how to take care of themselves, and have their support system that will help decrease the burden on the caregiver themselves. You know, if the person with MS is educated, feels empowered and confident to take care of themselves, then the caregiver will feel better and so maybe there can be those times when they can step away and they can, you know, take care of themselves or maybe when they're with the person, their loved one, that they're trying to care for, if that person gets stronger and can feed themselves, they can have a meal together that doesn’t require them feeding somebody, and they can just spend regular time together, so, you know, we attack it from both angles. You know, the person themselves with MS, but also the caregiver, and we attack the whole issue not just from a physical standpoint but from an emotional, cognitive standpoint to try to help people with MS be empowered to take care of themselves and everybody benefits.
Melanie: And wrap up with your best advice for caregivers about maintaining their own psychological and physical well-being so that they can take care of their loved one?
Dr. Backus: I just – I really can't stress enough that you pretty much summarized it Melanie that they need to take care of themselves that they need to identify the problems in themselves or, you know, when they are having issues and communicate that whether it's to the healthcare professionals that's helping them and their loved one or their support network or an external support group to maintain their physical well-being, so it's not just about the person they are taking care of. Eating a balanced meal, getting exercise but that they are doing that themselves and getting that support that they need. It's very, very critical to both them and the person they’re taking care of.
Melanie: Thank you so, Dr. Backus. It's great information. You're listening to Shepard Center Radio and for more information, you can go to shepard.org. That's shepard.org. This is Melanie Cole. Thanks so much for listening.