Selected Podcast
Community Dementia Care
Dr. Christina Prather discusses the importance of community dementia care.
Featuring:
Learn more about Christina Prather, MD
Christina Prather, MD
Dr. Christina Prather is an internist and geriatrician with the GW Medical Faculty Associates and an assistant professor of medicine at The George Washington University School of Medicine & Health Sciences. A Maryland native, she earned an engineering degree in biological resources and biomedical engineering at the University of Maryland, College Park and completed medical school in Baltimore at the University of Maryland. She completed her residency in Internal Medicine and fellowship in Geriatrics at the University of North Carolina Chapel Hill. She is a proud recipient of the James Bryan award from the University of North Carolina which is awarded to clinicians who are recognized for their compassion, clinical skills, and bedside manner.Learn more about Christina Prather, MD
Transcription:
Dr. Mike Smith (Host): A growing concern for many people is taking care of family members with dementia. Welcome to The GW Hospital HealthCast. I’m Dr. Mike Smith and today’s topic Community Dementia Care. My guest is Dr. Christina Prather. Dr. Prather is an Assistant Professor of Medicine at the George Washington University School of Medicine and Health Sciences. Dr. Prather, welcome to the show.
Christina Prather, MD (Guest): Good morning, thank you for having me.
Host: What a wonderful topic to talk about because I do know, in my own life, Dr. Prather, I’m experiencing some of this, so I think a lot of listeners are interested in this topic and so, I just kind of wanted to get your feel for it. How big of an issue is this, where family members more and more are taking care of dads, moms, grandparents with dementia?
Dr. Prather: Yeah Mike, I’m glad you started with that and I’m sorry to hear that you, in your own personal experience have had to go through this. What I find is that anyone I talk to who turns to a friend or another family member is often beginning to have this conversation within their own family. And we know from data from the Alzheimer’s Association that one in three seniors is likely to die of some form of dementia and that in the US now we have almost 6 million Americans living with dementia. The number of persons providing care, far exceeds that, and most of our medical practices don’t know how to support you or the person who is actually living with cognitive impairment. It’s a really big issue.
Host: Yeah. The issue of caregiver health, I think is something that’s not talked about enough and I think there are a couple of books out there and stuff. But I think it’s just as important as taking care of the patient with dementia. So, what do you think in your experience when a family is faced with this; what are some of the biggest challenges that you see them having to overcome?
Dr. Prather: That’s a good question. As a physician in our geriatric memory clinic at GW, one of the things that we really focus on is how the family unit is living with the cognitive disorder. So, often as physicians and healthcare providers we’re focused on just what are the day to day symptoms of any particular person but we forget that so many caregivers are having to navigate new financial challenges, legal challenges, accessing bank accounts, taking over finances for their parents who may or may not have that organized. People may or may not have the advanced directives in place to allow them the ability to access documents that they need or make transactions on their loved ones behalf.
We also know that a lot of caregivers are potentially still working, raising their own children. There’s a really high risk of burn out and depression and there’s a huge cost to caregiving emotionally and financially. And you are right, there’s a lot of great books and there’s a lot of great websites. I’m happy to provide some information at the end, if people want to take some notes.
Host: Yeah, sure and I think that would be wonderful. I want to talk about something that I think is – a lot of people don’t like to talk about, but I think it’s critically important, right. Tell us how you feel about getting an advanced directive.
Dr. Prather: Right and so when we think about an advanced directive, in the legal term, most people are familiar with going to their lawyer and getting a document that says who they want to be their healthcare decision maker or the surrogate who would speak for them if they ever did not have the ability to speak for themselves. And it’s a really transactional approach to having a really important conversation that needs to be a much more guided discussion with a person who might end up making decisions for you if you ever do not have the capacity to do that on your own. And so, it’s wonderful when people come in with an advanced directive and that a person who is dedicated to make decisions on their behalf.
But what we really need to be doing is having conversations with everyone before you even have a diagnosis of dementia, thinking about the things that are most valuable to you and your quality of life. There’s a really great website that recently came out. It’s www.dementia-directives.org. It’s an advanced care planning document that’s meant to drive a conversation about how you would actually want to live with dementia which is a really, really important thing because it’s one of the few diseases that’s a chronic disease, people often live with for years, even decades. And they lose the ability to actually speak for themselves. So, advanced care planning is a huge part of our practice.
Host: Yeah and I so agree with you. But it’s also, I think, it can be tough, right. It’s finally having to realize. Yeah, you have to finally get the family together. You have to have a serious talk, and no one wants to. It’s not fun. No one wants to do that. But, I agree, it’s so, so important and can just help the process so much better and take away a lot of stress, right? I think at the end of the day,
Dr. Prather: It’s really important at the end of the day for us to be able to turn to a family member and say, you know we talked about this here together with your loved one, when they could still tell us what was important, and we are here to help you implement the things that your loved one was able to tell you they wanted. It’s very hard on families, but by having a very honest conversation that’s often guided by your clinicians can I think really help alleviate some of the stress that comes in really difficult times for family members. And there are also some great online resources for helping have that conversation at home, if your doctor’s office isn’t having it with you.
Host: I kind of want to split the conversation I’m having with you Dr. Prather right now. So, and I want to focus a little bit on what we can actually do for the family member that has dementia, but then I also want to talk just a little bit about some maybe tips for the caregiver and how to make sure that they are taking care of themselves, right? So, let’s start with the family member with dementia. Obviously, there’s a pharmaceutical plan, a medical plan that’s going on, but I’m really referring to at home and for that caregiver. What are some of the things we want to do for mom or dad or the grandparent that has dementia at home?
Dr. Prather: So, that’s a great question. One of the things that I really try to focus on in my clinical practice feels a bit more soft to them when you are talking about guidelines and medications, but our real focus is on reestablishing joy and joyful relationships. So, things that someone enjoyed doing in their adult life before they had cognitive impairment may not be the same things that bring someone joy and calm or happiness once they are living with cognitive impairment. And it can be exceptionally challenging to see a loved one who is very accomplished or had hobbies that they always participated in, no longer be able to live at that same cognitive level or participate in things they once enjoyed.
And so, redefining the relationships of how you spend your time and what your expectations are for the person who is actually living with cognitive impairment are really important. Going out into the community and doing big events that someone might have enjoyed were once a great source of happiness might be overwhelming, it might drive to what we hear is agitation and people might come in asking for medications. But really, what we need to be doing is changing the environment around which the person is living on a day to day basis.
Host: Oh, that was great. There was something interesting I saw, and I get what you’re saying about that. It’s like redefining what joy is for that person in that new environment. I get that, but I did see, and I want your opinion as the expert Dr. Prather. It was a show on dementia, Alzheimer’s dementia and one of the patients they were following was a musician all of his life. And once he got to the late stages of Alzheimer’s like he had no music, he was kind of alone in a nursing home and somehow one of the nurses there figured out his past and found one of his records or something like that and started playing it and it actually woke him up a lot. He became more expressive.
Dr. Prather: Yeah, he came to life.
Host: Yeah, he did. What do you think about that? What do you think about trying to bring in maybe some of those things they did like that? Is that your experience that that helps?
Dr. Prather: So, that is absolutely what we are talking about. We know that bringing in music and dance bring down a lot of apathy and anxiety and agitation in dementia. But that when we really take the moment to pause and identify what are the things that make you you and continue to prioritize the person and not the disease and allowing the person to continue to live. We really see that that changes quality of life, not only for the individual but for the family and the whole unit taking care of someone.
A lot of the nursing homes are working to do more of that.
Host: Yeah. I’ll never forget. He was smiling and keeping the beat with his foot. And the nurses were like that’s amazing. It was like miraculous to them that he was having that kind of reaction. Let’s shift now to the caregiver though, right? There’s a lot of people taking care of mom and dad or grandparents with dementia and it’s hard, right? So, what are some of the things that the caregiver needs to keep in mind or maybe do, some tips to do so that they can stay healthy as well?
Dr. Prather: Right so great tips. One of the things that caregivers have to do is make time for themselves which is really hard. I’m saying that out there to any caregiver who is listening. I hear you. I know that’s really tough. My mom is a caregiver for my grandfather, and I know that her and her sisters and brothers have a really hard time creating barriers sometimes and creating space for themselves. But you have to continue to do that and it allows you to come back and be a better caregiver and to be more emotionally available for your loved one.
So, it’s really important to continue to create that safe space for you to continue to have joy and purpose in your own life. Caregivers have wonderful resources often in their communities that they don’t know are there. And so, connecting with community resources whether it’s through your local office on aging, your faith-based organizations, or even just friends of friends. One of my favorite patients, his wife developed her own sort of support system of other wives living with cognitive impairment and the amount of strength that came from just being in solidarity with each other was huge for her.
So, reach out. It’s really hard when you are living in it day to day but reaching out and not reaching in can really make a big difference.
Host: Oh, great, great tips. You mentioned some resources there. Can you – what other resources are there for caregivers? You mentioned one earlier. Can you kind of just run through any places, any websites that you think are helpful for these people?
Dr. Prather: Absolutely. Get your pens out. There’s a lot of great ones. The Alzheimer’s Association website is a wonderful source of information for any type of dementia. It’s not Alzheimer’s specific. And that’s just www.alv.org. There’s another wonderful website it’s www.caregiving.com and caregiving .com is a website that discusses different types of resources that are available in the community. There is also www.caregiving.org. So, if you are having a particular symptom that you are trying to work through, there are some great tangible resources there. Beyond caregiving.org and ALV, there are some great online websites for advanced care planning.
One that is really lovely is The Conversation Project and the Conversation Project provides videos and tutorials for how to have discussions around difficult conversations like advanced care planning and what are the things that you would value if you were too sick to make medical decisions on your own.
I also have a list of my favorite books that I provide to a lot of my patients and family members. There’s one called “The 36-Hour Day” by Nancy Mace which is a really well known book in the community of dementia care. And another one is called “Creating Moments of Joy for the Person With Alzheimer’s or Dementia” by Jolene Brackey and kind of gets to the theme of what I’ve been talking about which is this is a condition that people live with for a long time and it becomes an elephant in the room if we don’t learn how to live with it and own it and continue to redefine how we are going to make life good with it’s presence.
Host: Yeah, Dr. Prather I want to thank you for the work that you are doing at George Washington University Hospital and also thank you for coming on the show today. You’re listening to The GW Hospital HealthCast. For more information go to www.gwdocs.com, that’s www.gwdocs.com. I’m Dr. Mike Smith. Thanks for listening.
Dr. Mike Smith (Host): A growing concern for many people is taking care of family members with dementia. Welcome to The GW Hospital HealthCast. I’m Dr. Mike Smith and today’s topic Community Dementia Care. My guest is Dr. Christina Prather. Dr. Prather is an Assistant Professor of Medicine at the George Washington University School of Medicine and Health Sciences. Dr. Prather, welcome to the show.
Christina Prather, MD (Guest): Good morning, thank you for having me.
Host: What a wonderful topic to talk about because I do know, in my own life, Dr. Prather, I’m experiencing some of this, so I think a lot of listeners are interested in this topic and so, I just kind of wanted to get your feel for it. How big of an issue is this, where family members more and more are taking care of dads, moms, grandparents with dementia?
Dr. Prather: Yeah Mike, I’m glad you started with that and I’m sorry to hear that you, in your own personal experience have had to go through this. What I find is that anyone I talk to who turns to a friend or another family member is often beginning to have this conversation within their own family. And we know from data from the Alzheimer’s Association that one in three seniors is likely to die of some form of dementia and that in the US now we have almost 6 million Americans living with dementia. The number of persons providing care, far exceeds that, and most of our medical practices don’t know how to support you or the person who is actually living with cognitive impairment. It’s a really big issue.
Host: Yeah. The issue of caregiver health, I think is something that’s not talked about enough and I think there are a couple of books out there and stuff. But I think it’s just as important as taking care of the patient with dementia. So, what do you think in your experience when a family is faced with this; what are some of the biggest challenges that you see them having to overcome?
Dr. Prather: That’s a good question. As a physician in our geriatric memory clinic at GW, one of the things that we really focus on is how the family unit is living with the cognitive disorder. So, often as physicians and healthcare providers we’re focused on just what are the day to day symptoms of any particular person but we forget that so many caregivers are having to navigate new financial challenges, legal challenges, accessing bank accounts, taking over finances for their parents who may or may not have that organized. People may or may not have the advanced directives in place to allow them the ability to access documents that they need or make transactions on their loved ones behalf.
We also know that a lot of caregivers are potentially still working, raising their own children. There’s a really high risk of burn out and depression and there’s a huge cost to caregiving emotionally and financially. And you are right, there’s a lot of great books and there’s a lot of great websites. I’m happy to provide some information at the end, if people want to take some notes.
Host: Yeah, sure and I think that would be wonderful. I want to talk about something that I think is – a lot of people don’t like to talk about, but I think it’s critically important, right. Tell us how you feel about getting an advanced directive.
Dr. Prather: Right and so when we think about an advanced directive, in the legal term, most people are familiar with going to their lawyer and getting a document that says who they want to be their healthcare decision maker or the surrogate who would speak for them if they ever did not have the ability to speak for themselves. And it’s a really transactional approach to having a really important conversation that needs to be a much more guided discussion with a person who might end up making decisions for you if you ever do not have the capacity to do that on your own. And so, it’s wonderful when people come in with an advanced directive and that a person who is dedicated to make decisions on their behalf.
But what we really need to be doing is having conversations with everyone before you even have a diagnosis of dementia, thinking about the things that are most valuable to you and your quality of life. There’s a really great website that recently came out. It’s www.dementia-directives.org. It’s an advanced care planning document that’s meant to drive a conversation about how you would actually want to live with dementia which is a really, really important thing because it’s one of the few diseases that’s a chronic disease, people often live with for years, even decades. And they lose the ability to actually speak for themselves. So, advanced care planning is a huge part of our practice.
Host: Yeah and I so agree with you. But it’s also, I think, it can be tough, right. It’s finally having to realize. Yeah, you have to finally get the family together. You have to have a serious talk, and no one wants to. It’s not fun. No one wants to do that. But, I agree, it’s so, so important and can just help the process so much better and take away a lot of stress, right? I think at the end of the day,
Dr. Prather: It’s really important at the end of the day for us to be able to turn to a family member and say, you know we talked about this here together with your loved one, when they could still tell us what was important, and we are here to help you implement the things that your loved one was able to tell you they wanted. It’s very hard on families, but by having a very honest conversation that’s often guided by your clinicians can I think really help alleviate some of the stress that comes in really difficult times for family members. And there are also some great online resources for helping have that conversation at home, if your doctor’s office isn’t having it with you.
Host: I kind of want to split the conversation I’m having with you Dr. Prather right now. So, and I want to focus a little bit on what we can actually do for the family member that has dementia, but then I also want to talk just a little bit about some maybe tips for the caregiver and how to make sure that they are taking care of themselves, right? So, let’s start with the family member with dementia. Obviously, there’s a pharmaceutical plan, a medical plan that’s going on, but I’m really referring to at home and for that caregiver. What are some of the things we want to do for mom or dad or the grandparent that has dementia at home?
Dr. Prather: So, that’s a great question. One of the things that I really try to focus on in my clinical practice feels a bit more soft to them when you are talking about guidelines and medications, but our real focus is on reestablishing joy and joyful relationships. So, things that someone enjoyed doing in their adult life before they had cognitive impairment may not be the same things that bring someone joy and calm or happiness once they are living with cognitive impairment. And it can be exceptionally challenging to see a loved one who is very accomplished or had hobbies that they always participated in, no longer be able to live at that same cognitive level or participate in things they once enjoyed.
And so, redefining the relationships of how you spend your time and what your expectations are for the person who is actually living with cognitive impairment are really important. Going out into the community and doing big events that someone might have enjoyed were once a great source of happiness might be overwhelming, it might drive to what we hear is agitation and people might come in asking for medications. But really, what we need to be doing is changing the environment around which the person is living on a day to day basis.
Host: Oh, that was great. There was something interesting I saw, and I get what you’re saying about that. It’s like redefining what joy is for that person in that new environment. I get that, but I did see, and I want your opinion as the expert Dr. Prather. It was a show on dementia, Alzheimer’s dementia and one of the patients they were following was a musician all of his life. And once he got to the late stages of Alzheimer’s like he had no music, he was kind of alone in a nursing home and somehow one of the nurses there figured out his past and found one of his records or something like that and started playing it and it actually woke him up a lot. He became more expressive.
Dr. Prather: Yeah, he came to life.
Host: Yeah, he did. What do you think about that? What do you think about trying to bring in maybe some of those things they did like that? Is that your experience that that helps?
Dr. Prather: So, that is absolutely what we are talking about. We know that bringing in music and dance bring down a lot of apathy and anxiety and agitation in dementia. But that when we really take the moment to pause and identify what are the things that make you you and continue to prioritize the person and not the disease and allowing the person to continue to live. We really see that that changes quality of life, not only for the individual but for the family and the whole unit taking care of someone.
A lot of the nursing homes are working to do more of that.
Host: Yeah. I’ll never forget. He was smiling and keeping the beat with his foot. And the nurses were like that’s amazing. It was like miraculous to them that he was having that kind of reaction. Let’s shift now to the caregiver though, right? There’s a lot of people taking care of mom and dad or grandparents with dementia and it’s hard, right? So, what are some of the things that the caregiver needs to keep in mind or maybe do, some tips to do so that they can stay healthy as well?
Dr. Prather: Right so great tips. One of the things that caregivers have to do is make time for themselves which is really hard. I’m saying that out there to any caregiver who is listening. I hear you. I know that’s really tough. My mom is a caregiver for my grandfather, and I know that her and her sisters and brothers have a really hard time creating barriers sometimes and creating space for themselves. But you have to continue to do that and it allows you to come back and be a better caregiver and to be more emotionally available for your loved one.
So, it’s really important to continue to create that safe space for you to continue to have joy and purpose in your own life. Caregivers have wonderful resources often in their communities that they don’t know are there. And so, connecting with community resources whether it’s through your local office on aging, your faith-based organizations, or even just friends of friends. One of my favorite patients, his wife developed her own sort of support system of other wives living with cognitive impairment and the amount of strength that came from just being in solidarity with each other was huge for her.
So, reach out. It’s really hard when you are living in it day to day but reaching out and not reaching in can really make a big difference.
Host: Oh, great, great tips. You mentioned some resources there. Can you – what other resources are there for caregivers? You mentioned one earlier. Can you kind of just run through any places, any websites that you think are helpful for these people?
Dr. Prather: Absolutely. Get your pens out. There’s a lot of great ones. The Alzheimer’s Association website is a wonderful source of information for any type of dementia. It’s not Alzheimer’s specific. And that’s just www.alv.org. There’s another wonderful website it’s www.caregiving.com and caregiving .com is a website that discusses different types of resources that are available in the community. There is also www.caregiving.org. So, if you are having a particular symptom that you are trying to work through, there are some great tangible resources there. Beyond caregiving.org and ALV, there are some great online websites for advanced care planning.
One that is really lovely is The Conversation Project and the Conversation Project provides videos and tutorials for how to have discussions around difficult conversations like advanced care planning and what are the things that you would value if you were too sick to make medical decisions on your own.
I also have a list of my favorite books that I provide to a lot of my patients and family members. There’s one called “The 36-Hour Day” by Nancy Mace which is a really well known book in the community of dementia care. And another one is called “Creating Moments of Joy for the Person With Alzheimer’s or Dementia” by Jolene Brackey and kind of gets to the theme of what I’ve been talking about which is this is a condition that people live with for a long time and it becomes an elephant in the room if we don’t learn how to live with it and own it and continue to redefine how we are going to make life good with it’s presence.
Host: Yeah, Dr. Prather I want to thank you for the work that you are doing at George Washington University Hospital and also thank you for coming on the show today. You’re listening to The GW Hospital HealthCast. For more information go to www.gwdocs.com, that’s www.gwdocs.com. I’m Dr. Mike Smith. Thanks for listening.