Joys and Struggles of Caregiving

Brain & Life Podcast Transcript

October 6, 2022

In this episode, Dr. Daniel Correa talks with Dr. Mirnova Ceide, Psychiatrist at Montefiore Medical Center and Assistant Professor of Psychiatry at Albert Einstein College of Medicine. Dr. Ceide provides tools for families who are looking to start the conversation of long-term care for a loved one and explains the importance of caregivers checking in on their own needs.

Dr. Correa: I'm overjoyed to introduce all of you to Dr. Mirnova Ceide. I got to know Mirnova when we both did a master's in clinical research science at Albert Einstein College of Medicine and get to hear of many of the great work that she does in our Bronx community and with our Center for the Aging Brain. Mirnova, thank you so much for joining us today and to talk about some of the decision making that families have to do with home care and long-term care after dementia.

Dr. Ceide: Well thanks so much for having me. It's a topic I'm excited about and passionate about. It's really difficult disease to deal with, but we have some amazing families that we work with and we have a lot of resources that can support people I think more than they may typically know.

Dr. Correa: That's incredibly important. So we had a great discussion with Christina Zorich. She told us about her mother Olympia Dukakis's challenges working with Christina Zorich's grandmothers of course with Alzheimer's and making decisions about home care and some multiple people in their family and her mother and others who had that challenge at times deciding when home care was appropriate and feeling uncomfortable with many of the long term care facilities. How do you approach some of that initial discussion and helping people think about what resources there are and the decisions they need to make?

Dr. Ceide: I think the most important thing that we can empower our patients and their families with is to actually make sure we have a good diagnosis. So it actually really does start at diagnosis because then we know what to expect in terms of symptoms and prognosis. So some kinds of dementia may give you more behavior type symptoms, some may give you more issues with walking. Those are all going to impact function. Then the second piece is what is your day to day function? So I'm a psychiatrist, but first and foremost I'm a geriatrician. So we're always thinking about how are you functioning? Can you get to the bathroom? Is the home you live in something that's compatible with your function right now and what we anticipate your function to be. So then we have a realistic picture that we're working with. And then of course the most important piece is to focus on the goals of care.

Have there been conversations, is it really important? Is it a value for the family to stay together, to stay in the community? Short of a few situations, anybody can stay at home. You may not completely be crazy about the things you have to do to make it happen. But if it's important for a family, we can make that work. If that's not necessarily the goal of a family, then sometimes a skilled nursing facility can be another beautiful option that we're able to come to together. But it really does start with clear expectations, understanding of prognosis and understanding the functioning in the home as well as goals of care.

Dr. Correa: That brings up that important point that maybe many of us should be having these longiterm goals of care discussions with our family members at all ages, not just our aging family members so that really we all have a better understanding of each of our goals for healthcare, for any emergencies and for what we want long-term. What do you feel like are some of the top things that really family should be just having as a part of their conversation day to day or each year to keep updated on what each person wants?

Dr. Ceide: Well, it's a really good question. Ideally we would be having these conversations regularly when there's no crisis and so it's a good time. Sometimes I would say the easiest way to bring it up is you heard about neighbor, miss such-and-such is going to a nursing home. What do you think about that? Is that something that you've ever thought would make sense for you? Do you feel like it's really important to stay home? So sometimes there's some jumping off points so that are probably most appropriate and comfortable for families to talk about it.

All families will go through crises, so that may be a time to really talk about what's important, asking questions about what do you want to be able to do? And if it's, "I really want to be able to see the grandkids regularly," how do we make that work? Sometimes it's really basic concrete things that we know continue to be important that we want to focus on because there may be a situation where we're not able to do the home, but we may still be able to accomplish the goal of seeing the grandkid every other day. So it's really thinking about big picture but also are there particular things that make it worthwhile? So it's still what matters, questions that we can be asking our patients, but also families can be asking each other.

Dr. Correa: Yeah, that's great. Now let's take the situation of an Alzheimer's patient who at that point is starting to need, whether it's 12 hours a day of assistance or maybe even more frequent around the care support and the family is considering whether they're going to be that person staying at home or in home with other family members or going to a long term care facility. What are some of the pros and cons to both of those settings?

Dr. Ceide: I think that the biggest con is that you're not in where you're comfortable. Many of our patients have lived in the same apartment house 30, 40 years. And so particularly if they are early in Alzheimer's, that's going to be not only just hard to leave for any of us, but it actually will be quite disorienting. So sometimes we can see increase in symptoms, some increase in agitation, disorientation because they're not in their own home, they're not quite sure where they are. Obviously they'll be interacting with different personalities, so that can be stressful for them. And then really their schedule will be dictated by others. I think that's the biggest thing. I think those are the biggest issues. It's just the overall comfort and ability to be home. And sometimes families will say it seems like the person declined when they went into a nursing home and it may be because they really had a lot of friends in their neighborhood and people around them and all that socialization got changed.

So even though it made sense, it got changed. Now the pros are that you have multiple caregivers. So the issue around caregiver burnout is really minimized because you have staffing, you have nursing and then really very attuned dementia care facilities. They have a lot of process groups for the staff to give some extra supports to the staff so that they can be very available to their patients. If somebody's more complicated medically, you really have the opportunity to manage that. And if there are a lot of behavioral issues, they have the opportunity to titrate medications very easily to help and support that patient. So it really just allows for somebody who has a lot of symptoms, very quick care and efficient care. So on the alternate being at home, I would say definitely the big pros is that the person's comfortable there where they're at.

And so sometimes people really can function pretty well even with advancing dementia because they know their place, they know where everything is, has been the same thing for 40 years. And we know that long term memory is going to be something that's going to be later to be affected, so they're really comfortable there. A lot of times when they're home, they can still be engaged in their church family or their neighborhood family and that integration is very important for just self esteem and to feel really meaningful like you continue to contribute and often you really have the family there. Alternatively, it is a bigger burden on the family. As you pointed out, maybe somebody can get 12 hours. Nowadays it's very rare that you could find 24 hours unless it's a private pay situation, so it's really difficult to get that level of care. And then of course if you need medical changes, if things are changing very quickly, then you have to find a home visiting doctor to find a high quality home visiting geriatrician.

That may be difficult. And so there are limitations there if somebody has a lot going on medically and they're not very stable. The other piece of that is if there are kids in the home, and that comes up sometimes. On the positive, it's really important for kids to know to take care of their loved ones and that that's an important value in the family. On the other hand, if somebody has a lot of symptoms, if things are rapidly progressing, this could be very disturbing to the children in the home and even the person experiencing it may not have wanted their grandkids or their kids to see them that way. So these are really important personal decisions to explore as a family. I think the biggest thing to take from that though is, and I always say patients, there is nothing that you didn't sign a contract making you do something.

So if you decide on a nursing home and we've had some patients do it and they try it and they try it for several months and then the family may say, "I just don't think it was the right decision. I think we're in a different place now. We're more prepared and we're ready to take them home." And similarly, we can always trial home and we may get to a point when it makes sense for somebody to go into a nursing home. As providers, one of the things that we can do is really keep checking in with families and giving them permission to make those changes that you never have to just say, "This is it and this is the final decision." Because I think that's the most anxiety provoking part of this process.

Dr. Correa: If a patient themselves who has dementia, but maybe they've been very private about their decisions, if they want to start exploring that discussion with their family, how do you suggest that they start that discussion? Or even someone who doesn't have dementia yet but wants to start having that discussion with their kids but haven't really shared their medical issues in the past?

Dr. Ceide: A good opportunity is just to set the time in place with your family, prepare them for that. It's not something that you necessarily want to walk into in terms of a conversation, exactly in that example where maybe you're thinking about it and you might blindside some of your other family members. So sometimes it may be something as simple as saying, "I've been thinking a lot about planning and the future and I just want to make sure that we're on the same page. Next Sunday, you want to come over for lunch and let's talk about it a little bit more?"

I really do recommend doing it that way. It gives you the person who wants to talk about it, time to really think about what you want to say in terms of what's really important to you. If you really want to try to stay at home, if you're very worried about ever being burdensome to your family, if that's something that you worry about those, those are things that you're going to want to bring up at the conversation and it gives the family members who are coming a time to think about, "Oh, okay, what might they be wanting to talk about? I had some questions as well that I wanted to bring up too."

Even within my own family, we've had conversations where people don't necessarily know what insurance the person has. Families, we don't always necessarily talk about what the finances are. So you may want to also bring that to the table when you arrange to have that conversation, a more broad discussion about what's really important to you, what matters to you, but also a little bit of a conversation about, "By the way, whoever is going to be that person that you want to help you with finances, if there's ever a time that you're not able to do it yourself, I really want to start talking about that. And then let's set up a second time and place to explore it in more detail."

No one said the expectation that this is an evolving conversation, we're going to keep checking in, but you're just starting the conversation there. So I would say another take off point from that in terms of it preparing people but also expecting and preparing others that this is something that's dynamic and evolving, that we wouldn't just have this a one time goals of care, but that it's really a dynamic conversation about what works for the family.

Dr. Correa: And for the family members who are completely and totally embracing being engaged with their aging family members or those family members in need and the caregivers. Can you make some comments as to what should they be thinking about to keep their eyes out for their own caregiver burnout and to protect themselves so that they're also healthy moving forward?

Dr. Ceide: With caregivers, you get so invested in the person you lose yourself. So you may want to set appointments, schedule to make sure that you're having some time to actually check in with yourself. And it's not just doctor's appointments, but you need to be making those. So one, if you see that you're canceling regular checkups, that's a sign. This is not good. If you cancel more than one appointment for your own doctor, that's a sign that you're overburdened. You should be able to have at least a point person or someone that you can reach out to stay with your loved one, for you to take care of those basic needs. But the other thing is, when you're getting up in the morning, are you spending more time worrying about that person than just thinking about getting up for the day? If you are overwhelmed and constantly worrying and feeling unsure if you're making decisions, those are signs.

If you're just not feeling settled in your own space, those are signs for, I think more early signs of caregiver burnout. Obviously we know when people get overwhelmed, but those are great opportunities to stop and say, "Hey, I need to check in. Clearly what I'm doing isn't working completely for me or is not sustainable. And so I know I'm starting to feel overwhelmed and stretched. I need to check in with the provider that we're working with, whatever community organization we're working with to see if there are additional supports for me, because I'm going to need that time." Because you really do want to make sure that you're having time to check in, schedule with yourself, take care of basic needs, and then be doing a lot more self care. Meeting with friends, doing whatever, exercise, any of those things.

Dr. Correa: I think that's an excellent action point for all of us to check in, whether you're the caregivers, to check in on how you're doing and that you're also taking care of yourself. And then for each of us, for ourselves to check in and think of who are the loved ones that we want to talk about and make clear our goals and for those that we love that might be aging or could at any point have any emergency that then we have to make these decisions, do we need to check in with them? Thank you so much, Mirnova. This is such a wide scope, but incredibly important and real discussion that we all need to have. And thank you so much for joining us here today, Dr. Mirnova Ceide.

Dr. Ceide: Thank you for having me. This was great. Thanks.