The ‘Humor and Heartache’ of Caregiving with Filmmaker Michelle Boyaner

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Nath:
And I'm Dr. Audrey Nath.

Dr. Correa:
This is the Brain & Life podcast.
Welcome back to the Brain & Life podcast. Audrey.

Dr. Nath:
Hello.

Dr. Correa:
Did you know that tomorrow is National Caregiver Day?

Dr. Nath:
I did not. I'm so glad. Caregivers don't get enough recognition.

Dr. Correa:
Totally. We do a lot in healthcare, but we are there for just a few days, and what is needed for everyone's battle and their management with various different medical conditions, it's really those people at home that help support and run alongside them all through life.

Dr. Nath:
All the rest of the minutes and the hours of the day and the weeks that we as physicians are not there. It's significant.

Dr. Correa:
In honor of that we are featuring documentarian, Michelle Boyaner. Now Audrey, do you watch any documentaries?

Dr. Nath:
I watch way too many documentaries on Netflix and just straight up on YouTube. Seriously, there's a lot of really good ones.

Dr. Correa:
Well, there's so much we can learn about the world, and one of the things we can learn about is just the time and love and challenges that people might feature caregiving for a loved one with dementia.

Dr. Nath:
Wow.

Dr. Correa:
So Michelle Boyaner started down that path with her own family, and she documents that journey and interviews families from around the country in a documentary called It's Not a Burden. It's now available everywhere online, including YouTube.

Dr. Nath:
Yay.

Dr. Correa:
You can also now find the podcast on YouTube.

Dr. Nath:
That's right.

Dr. Correa:
So we look forward to you listening to our episodes wherever you prefer them, but especially if you like please check us out on YouTube.

Dr. Nath:
Absolutely. And coming up soon, on February 23rd, we're going to have our next brain health episode about nutrition and neurology with Dr. Reeta Achari.

Dr. Correa:
Welcome back to the Brain & Life podcast. I was just recently watching this documentary and it just has touched my heart. And I want to introduce you all to Michelle Boyaner. She's an award-winning Emmy nominated documentarian, filmmaker and producer. Her film and this past June's Today Show Documentary of the Month titled It's Not a Burden, the Humor and Heartache of Raising Elderly Parents. This movie follows Michelle's and other care partners who open up to all of us about living and caring and learning and coping with the honor of supporting an aging parent.
It's sharp, it's honest, it's humorous and reflects to all of us, both the good, bad, and ugly of being there for another person as a part of their daily care. It starts with the story of her and her parents and then weaves in a patchwork of love stories, relationships, to show other care partners they're not alone. Thank you so much Michelle for this story, this film, and for joining us here on the podcast.

Michelle Boyaner:
Oh, thank you Daniel. I appreciate you having me on.

Dr. Correa:
I'd like to start similarly to how the film starts. Can you tell us some more about your and Elaine's lives and relationship?

Michelle Boyaner:
My mother was brilliant and funny and complicated woman who really loved having children, and my parents had eight of them. One day she made a choice that she did not want to be a mother anymore for various reasons, and so that really did complicate our relationship. I was just about 18, 19 years old when she left, and so my dad and I raised all my brothers and sisters, and that really shifted my role in the family from child to partner with my dad. As life does, there were many decades and complicated things in between, but as my mother began aging, she found herself in need of support, and it was the right thing to do to be there for her and help her on that journey, and a blessing and so many lessons came with that. So I'm really grateful, but definitely complicated relationship.

Dr. Correa:
It sounds like that. And how did you initially become aware of your mother's challenges and her cognition issues and the needs for that daily care and support?

Michelle Boyaner:
Well, my mother was very close with one of my younger sisters, my sister Danielle, who passed away very unexpectedly, and they had been living together. And when that happened, one of my other younger sisters, Jenny, took my mom in with her and she did the best she could and was as patient with her as long as she could be. And then my mom went to another sister's, my sister Lisa's, and she did the same and was as patient.
But we saw during those times, there were some slight issues with the memory happening, but she really was not taking her medications regularly. We would find pills on the ground. Everybody that's listening that has an aging parent knows that whole thing with the pills on the ground that don't make it in. And we could tell that cognitively there was a shift, that she could no longer be home alone during the day, for example. And so we began researching board and care situations, which is what we could afford for her, and found a wonderful place for her in Orange County, California, where all my siblings were, and we were able to place her there where she received the supervision and the medications and all of that that you get in that type of a situation. It was definitely that we didn't feel safe leaving her home alone, that she was just cognitively not her sharp self anymore.

Dr. Correa:
And at that point, did you, your family and your mother already have some information and answers about what was causing the cognitive issues, or that was part of the journey also?

Michelle Boyaner:
That was part of the journey. We knew that something was shifting, and so we took her to see the primary care, trying to get referrals and all the things that you need in order to try to figure out what was going on. And I sat with her in several different appointments where they would give her the cognitive test, draw the hands on the clock, remember these words, and I could see her acing it certain times. And then other times when she wasn't and she was looking to me to see if she could cheat, would I mouth the answer to her? Absolutely not.
But it was sort of a dementia diagnosis, eventually it was. She was never diagnosed, but I do feel that it possibly could have been Lewy body as I learned more about the different types. She'd had hallucinations at certain points, seeing water pouring from the wall, different things like that. This was a while ago, but it was difficult to try to get some kind of a diagnosis to try to get her on some things that might support her with medications. But once we did, at least we felt like we were doing something. It wasn't enough, but we felt like we were doing something.

Dr. Correa:
I also wanted to share with you a clip from It's Not A Burden. This clip illustrates a powerful moment between Michelle Boyaner and Elaine, her mother, who are having a discussion about Elaine's dementia diagnosis where Elaine expresses her dislike for the word dementia.

Michelle Boyaner:
What did he have to say? Do you remember?

Elaine:
Oh, basically he said, this is a process, and depending on what medications were, it can slow it down, but nothing can take it away.

Michelle Boyaner:
Right.

Elaine:
Well, I already knew that.

Michelle Boyaner:
But what we've come to terms in terms with is what is your diagnosis?

Elaine:
Crazy.

Michelle Boyaner:
No, that's not true. What is your diagnosis?

Elaine:
Dementia. I hate that word. Do we have time to get a bite for lunch?

Michelle Boyaner:
Yeah, we'll get a bite. We'll get a bite.

Dr. Correa:
Unfortunately, some of the things that affect cognition and what we need to take care of ourselves daily don't necessarily have a way of reversing or changing them. So either way, that need's going to be needed.

Michelle Boyaner:
Absolutely. Yeah. And just speaking of cognitive impairment, my dad who deals with all these different health issues, diabetes, COPD, real issues with oxygen and things like that, he has what I see as a cognitive impairment that's been happening over the last few years. It's not dementia, and it's so amazing to know the difference. But he will say things like, "I hear the words you're saying, but I don't know what you mean." And I try to tell him, "Dad, this is a cognitive impairment," because he's so fearful of dementia. I said, "This is not dementia. This has to do with your diabetes. This has to do with side effects of your medication." But to have the two examples of the two parents right up there and to have seen it so clearly in my mom and what dementia was, if there was a flashcard for dementia my mom's picture would be right on there with being just that. And I saw it with my grandmother, her mother as well. But my dad, it's a cognitive decline and that is a different thing, something you definitely have to be concerned about, but different than dementia.

Dr. Correa:
How has the relationship and path been different as you were describing in supporting the care of your mother compared to your father?

Michelle Boyaner:
Yeah. Well, my dad was always the captain of our family, just the superhero working two jobs his whole life to take care of this giant family they decided to bring into the world, which I'm so glad they did because I love one of those siblings, but worked so hard and was living independently, but was a hoarder. And so that's kind of the thing that we had to try to manage. While he was still caring for himself, his hoarding had become quite problematic, but his health was manageable. He was doing all his own medications, he had all kinds of spreadsheets. He went to the doctor by himself, he drove, and then that all sort of really shifted really during Covid, but just this past December, he got pneumonia quite seriously where we weren't sure he was going to make it. And the decline just really took its toll as far as physically, I've seen him really age in the last year with that.
And so with him, it was much more we were concerned about the clutter in his home, and not concerned about any of his other things that he was managing real well. And now I'm managing his healthcare, I do all the medications. He has full-time care in his home with him 12 hours a day, caregivers helping with all his daily tasks. And we're just so grateful that we can have that support with him.

Dr. Correa:
And the resource challenges of people needing to support the care of their family members and the challenges of 24 hour or whatever level of care someone can get is such a challenge everywhere in the United States and in our system. You've worked on various documentaries to bring other people's stories to the screen, but what made you put yourself and your family's stories upfront so openly?

Michelle Boyaner:
Yeah, it wouldn't have been a choice I would've made. I did make it. But our film prior to this, Packed In A Trunk, we were on the road with that film and I found myself needing to schedule doctor's appointments for my mom for when I knew I was going to be in town. And suddenly the things that were not as efforted when I was in town became more of a scheduling conflict, and her care really started to complicate things. It wasn't just something I could do in my spare time.
As I was doing that, and then I was speaking with a really close friend of mine and she and her sister had been taking care of their mother, Esther, and their father Saul for years. And we were sitting around one night talking, and I was talking about the symptoms my mom was having and we felt like it was dementia, and she was talking about the symptoms her mom had. And I realized this is something I'm going through, this is something my dear friend Maxine's going through. I know so many others are. I feel like this could be an important thing we could do. And I knew my parents, I knew their stories were compelling, but I knew that I wanted to give everyone a way in. So I wanted to try to cast a wide net and tell as many stories as I could.

Dr. Correa:
In reality, it's the practical way many people find themselves in the situation of supporting for a family member or an elderly member that they're taking care of. The story of this movie in a way became your life before you even were planning the story itself.

Michelle Boyaner:
Yeah, it absolutely did. And to be 100% honest, there was a big layer of resentment that was baked into the cake of what I was doing with my mom. I was resentful that time that I had was needing to be spent to help with her, because again, she left the family. There was still a lot of residual anger and it was just like, well, this is a situation you find yourself in at the end of your life here, mom. And I'm so glad that I was able to let go of that and let that fade. I certainly didn't express that to her, but it certainly was when I was on that hour drive down to Orange County from Los Angeles once a week to take her to different appointments, it was definitely in my mind. And in the film you see the journey that we go through together, and it is really one of forgiveness which I'm so, so grateful for.

Dr. Correa:
Before this movie, you had written a book of personal essays, Oh, For God's Sake, Whisper It, where you shared the stories of your beloved grandmother's battle with Alzheimer's. It's interesting, you've developed both an art form and in your way so many different projects that are a purpose of storytelling. I'm wondering if the book and the personal essays and then this movie were each your own way of processing through storytelling some of the challenges that you were going through.

Michelle Boyaner:
Yeah, a hundred percent. I mean, I think anyone that writes or anyone, that is definitely how you create the medicine for yourself. And so when I was sitting with my grandmother, who was my mom's mother, as I was witnessing from the front row her dementia and that progressing, I just tried to make sense of things. I just tried to create alternate reasons for things or what it might be. And so the personal essay style of expressing these different adventures we'd go on, I'd go and spend Saturdays with her, and that became the beginnings of those essays. But absolutely, it's definitely how I process things. And at the same time, I think again, if there's someone else going through this, can they find medicine in it as well? And so that is what drives me in a majority of the projects that we do.

Dr. Correa:
For yourself or maybe even some examples from the other story partners throughout the movie, how did you manage the stress and the challenges of supporting your mother while living with the memory of who she was and your past relationship, and then the differences compared to that value and deep love that you had for your grandmother?

Michelle Boyaner:
There was definitely comparisons going on, for sure. And you can see in the film, you see the progression of my frustration and also the mistakes I made both with my grandmother and with my mom. With my grandmother, she talked about wanting to go home, which we know is something that a lot of people that are dealing with this do. They want to go home, they want to go home. And I made the giant mistake of taking her in the car to the place where her home no longer was to show her that it wasn't there anymore. "Grandma, you are home. They tore down your house." Thinking that was going to help. And I do the same mistake again with my mom where I'm correcting her on things.
And what I did learn through this journey meeting with other families and talking to professionals was to join them in their world, to do your best to support whatever it is that they are experiencing and to try to redirect, and don't sit there with a red pen and circle the mistakes and give them the right answer. And so I really purposely left all those mistakes in the film. I wanted people to see me doing it wrong. I wanted them to see that, because that's important. And I didn't how wrong I was, but it is so important to try to help support them, redirect, do whatever you can. You don't need to be right. It's not a lie detector test, it's what they're experiencing in that moment.

Dr. Correa:
I found that to be really one of the most important parts, at least maybe it's a reflection of ourselves, what our attention gets drawn to. But one of the most important parts of the film, and thank you so much for leaving that in, for showing us what sometimes may be mistakes so that we can all each learn from them. And also just understanding that we're going to make a mistake even in the best intentioned, even if you're following a book that tells you what to do as if there's somehow a prescription, we're all making mistakes.

Michelle Boyaner:
We are. And I think about old dance classes where they would have paper on the ground to show you the steps for you to try to learn a dance, right?

Dr. Correa:
Yeah.

Michelle Boyaner:
And I think how can we create roadmaps for people who are going through this journey? And that's been the thing too. The film was released during Covid, but we've just started having in-person theatrical screenings. And what we are seeing with these audiences is first the gathering together of a group of people where you can look to your left and look to your right and you can see other people that are going through this, and these Q&As that we're having afterwards where people just want to testify. They just want to share their experience. They just want to say thank you for what we've shown in the film or add their little idea or, "This is how I fixed this," or, "Have you tried this?"
People standing up from different places in an audience just wanting to help each other, and that's the community we wanted to create with this. And so the fact that the film is out there and that these in-person screenings hopefully will continue over the next couple years of gathering people together to give them that piece of paper on the ground that shows you the steps to try our best. We're all going to make mistakes, like you said.

Dr. Correa:
Yes, as much as possible.

Michelle Boyaner:
If we can help our fellow man, boy, I think that's one of the reasons we're here.

Dr. Correa:
Well stay tuned, just towards the end we'll give some more information about the upcoming community screening and tours. I definitely want to hear more about that. In the film several of the story partners, I'm thinking of Michael specifically, shared for them the importance of self-care. If he's not taking care of himself, he really couldn't be there for his family. What were some of the other stories that really drew that attention to self-care from the movie that really stand out for you?

Michelle Boyaner:
Well, let me tell you, Michael, who shared the story of... he's a sandwich dad. He had twin teenagers at the time and rented the house next door to his mom so he could be next door to her, and single dad. He talks in the film about how important it is to put the oxygen mask on yourself before you can help other people. Mike had a giant heart attack like a few months after filming.

Dr. Correa:
Oh my.

Michelle Boyaner:
He's doing okay, he's bionic now. He has something put in there to shock it. But he wanted to say that, he believed in that, he was not practicing that. And he felt he was practicing it. And so it is important, self care. Boy, the stress you feel. Some of those doctor's appointments and waiting, waiting, waiting, waiting. And then you get moved into the room and then you're waiting, waiting, waiting. And you're sitting there and you're thinking you're missing work and how much parking's going to cost? All the different things that are going on and what's going to come from this appointment? I just need a prescription to be renewed or whatever the thing is from my mom. And what's my blood pressure? You're taking my mom's blood pressure, what's mine? Are we taking care of ourselves? And that is such an important thing. Because boy, I'm an important part of the whole mix and I know that I don't take care of myself the way I should. And that's another thing, is how important physical care, but also support groups as an adult child caring for either an aging parent or a sibling or family member of any kind.
If you can carve out the time to find support to talk about what you're going through, that pressure release valve of allowing a little bit of that out and seeing other people going through it is so, so important. So important.

Dr. Correa:
It seems like just one of the most essential tools. This term we throw around is self-care, and that can mean a whole lot. You were sharing the variety and the diversity of the perspectives that you brought forth, and that was one thing I really appreciated particularly about the film, because too many times it's just kind of one pattern, one way of doing it, and often it's a way that requires a lot of money and resources.
Another variety that you brought in and I appreciated was just the background and the gender of these caregivers and care partners. You told us earlier in the interview about how you and your sisters supported your mother. The film shares many stories of Superwomen and their families. But can you share some about that, and talk about that disproportionate responsibility that falls on women in our lives?

Michelle Boyaner:
Recently we did a Zoom presentation where the audience watched the film and then we did a Q&A afterwards, and someone wrote in to me afterwards that was a son that was caring for his mom, and he said, "I love the film. I'm just wondering why there weren't more sons represented." And I told him, "I know there are wonderful sons out there doing it, but it is in our experience that the vast majority of the caregiving does fall on the daughters or daughter-in-laws."
And that doesn't mean there aren't sons. There definitely are. We definitely wanted to include more sons if we could have. We didn't find that those stories were presenting themselves. And when I'm in doctor's offices, when I'm out in the world and I'm seeing it, I am seeing a lot of daughters. And it is Superwomen doing it. There are definitely sons out there doing it for sure.

Dr. Correa:
It's such an important part, and I think it's highlighted in the film particularly, but so much more that people need to be aware of. And as much as we can trying to share that responsibility not only as families, but also thinking about it as our group and society and community. So after the release, you've extended access that you were talking about to the movie with a community screening tour. So how's this going? How's this working and where are you going?

Michelle Boyaner:
We definitely are planning to take it to as many cities as we can. The best way for people to be kept updated is to go to our website itsnotaburden.com and you can sign up. And we'll be sending out updates as cities begin getting booked and we know exactly what that's going to look like. So if people want to sign up on the website, we will be keeping them updated.

Dr. Correa:
Wow. So it definitely seems like something we all need to take a look at on the website. Take a look at the possible upcoming locations and events. It sounds to me like the kind of thing that we need in every city. Are there some supportive words that you would offer to the Michelle of the past who is just starting down the journey of supporting the care of Elaine?

Michelle Boyaner:
Gosh, pace yourself. Right? You just don't know what it's going to take. And it's like packing for a trip and is the trip a weekend trip or is the trip a longer trip? And it feels long. And for them too, they're in there and they're living it in real time and there's a point where you get to tag out. Hopefully you go home or you go into your own room or if they're living with you, carving that out, but they're living with being in that body and experiencing those things all the time. So I just would say dig for the most compassion you can find and try to lead with that.

Dr. Correa:
Well, thank you so much for bringing in that message to all of us, bringing in your film and sharing really so openly the path and the story of your time with your mother and your father. I think it's something that we all need.

Michelle Boyaner:
Thank you so much. And again, thank you for letting me appear and use this platform to help spread the word.

Dr. Correa:
Before we move on to our next conversation with Beth Kallmyer from the Alzheimer's Association, we want to end with a clip from the film, which features an impactful conversation with Paula, the primary caregiver for her mother, Tricia, who's living with Alzheimer's. Paula shares what being a caregiver means to her and the purpose it has given her. Thank you so much to Michelle Boyaner and her team for providing these clips to share with our listeners today.

Paula:
It was probably two years after my dad's passing that my mom started really noticing that she was forgetting things, losing the keys or forgetting how to put the keys in the door. And then maybe there's a moment where you forget. Where you go, God, how do I do this?

Tricia:
I can't even make any-

Paula:
Sense out of anything?

Tricia:
It just seems like we're so...

Paula:
I mean, I just want to hang on every word so that she feels that she's being heard and that we're really having a conversation.
Being her primary caregiver has been an incredibly profound and beautiful thing filled with heartache and just devastation. But I mean, there's just been so much beauty in it.

Dr. Correa:
Is this episode leaving you wanting more? Get the latest tips on healthy living and management for more than 250 neurologic conditions by visiting brainandlife.org where you can learn more about neurology every day powered by trusted neurologists.
Welcome back to the Brain & Life podcast. Now, following that great discussion that we just had with Michelle about her documentary, I'm happy to be joined by Beth Kallmyer. She's a social worker with over 30 years of experience working in healthcare and nonprofits, and she works right now with the Alzheimer's Association as their vice president of care and support where she oversees and coordinates national and local programs to help individuals facing Alzheimer's and their families, along with coordinating professional care services in all of our states.
It's great to have her here, I look forward to talking with her about the resources that are out there for the community living with dementia.

Beth Kallmyer:
I'm really looking forward to our conversation.

Dr. Correa:
I'd like to even go back to before you got involved with the Alzheimer's Association. Tell us a little bit about your experience with dementia or Alzheimer's before you started there.

Beth Kallmyer:
I've been at the Alzheimer's Association for almost 22 years.

Dr. Correa:
Oh wow, okay.

Beth Kallmyer:
It's been a while, but before I started there, the experience that I had was largely in my own family. I had two grandparents with it at that time, and I did have some experience also, I worked as a hospice social worker for a while, and certainly saw and worked with some patients in that capacity, but it really wasn't until I came to the Alzheimer's Association that I started working specifically in dementia.

Dr. Correa:
Can you tell us a little bit more about the kind of support that you do regularly provide for the community living with Alzheimer's?

Beth Kallmyer:
Sure. So in communities nationwide, we have hundreds and hundreds of community volunteers that get trained to deliver our education programs about the disease and about caregiving strategies. We also have support groups in communities both virtually over Zoom as well as in person. So it's really important for caregivers of people living with dementia to get that kind of support.
And some people need education, some people want to talk to other caregivers that are experiencing the same thing. So the Alzheimer's Association tries really hard to make sure that we're providing the types of information and support services that somebody might need.

Dr. Correa:
And for the families who are already living with dementia and their care partners, what kind of help can be provided through the helpline?

Beth Kallmyer:
So the helpline is 24/7. It is staffed with dementia specialists and masters level social workers or counselors, and they're there to really give customized help when the person calls. So regardless of what's going on, you can call and talk to someone, work through problem solving, talk about your situation, get expert advice on it. It's really ideal because caregivers are busy. They're doing a lot, and so the ability to call whenever they have a moment is really critical,

Dr. Correa:
And I think that's a really excellent point. So it's not just necessarily to ask about questions for the person that they're helping take care of. They can even ask about the help that they need for their own care and support.

Beth Kallmyer:
Absolutely. I'll tell you that many caregivers call, and they're calling specifically about caregiving strategies for the person living with dementia. And sometimes they're surprised when we say, "Well, how are you feeling? How are you taking care of yourself?" Because we know that when caregivers have support from their families and communities, whether it's with support groups or at their church or whatnot, we know that those caregivers are going to have a better experience.
It can be devastating and overwhelming to take care of somebody living with dementia by yourself. And so sometimes they start out doing that and they're like, "Oh, they're in the early stage. They don't really need that much right now." But Alzheimer's and dementia, they're long diseases. They go on for an average of four to eight years, and over time it's really very, very possible for caregivers to get burned out if they're not building in those supports.

Dr. Correa:
And it sounds like then really there's no time that's too early to start connecting with the Alzheimer's Association and seeking this kind of support and planning ahead.

Beth Kallmyer:
Absolutely right. One of the things that we talk about a lot is early on, soon after a diagnosis is given, really thinking about who's my care team going to be? Who's going to be my support? Because when you do that ahead of time, then when a crisis happens, and it generally does at some point, then you've got that built in support. You're like, oh, I can go to my support group tomorrow night and I'm going to talk to them about it and see what other folks have done in this situation.

Dr. Correa:
I also want to ask about some of the other services that the Alzheimer's Association provides for the community. I've seen mentioned about Alzheimer's Connected and Alzheimer's Navigator. What are these other services and what other things can people seek for?

Beth Kallmyer:
The Alzheimer's Association website, which is alz.org, there's lots and lots of information. There's whole sections about just Alzheimer's disease and related dementias and information about what those diseases are. And then there's a whole section on caregiving support.
But additionally, we have a program called ALZConnected, which is online message boards. And so those message boards are really active, and if somebody comes on and posts a message, they'll get a response usually within an hour. I mean, they're very active message boards. And for some folks they might not want to post. Some go in and read. But what's great about ALZConnected is you can go in there and we have an archive of messages, so you can search whatever situation you're dealing with.
So for example, if a family is worried about wandering, which is something that people in the middle and later stages can do where they kind of leave and sometimes get lost and they're trying to go somewhere and it's dangerous, they can go into ALZConnected, type in wandering, and see what other families have done, see what strategies they've used.
And so that whole idea of they can engage at whatever level's comfortable for them on the ALZConnected message boards.
And then Alzheimer's Navigator, we call it a care consultation online, where they answer a series of questions and then the platform gives them sort of action steps to take. So for example, if they're in need of what do I have to do to plan for the future financially or legally, then it'll ask those questions and then help them develop an action plan with things they can do to put those things in place.

Dr. Correa:
Now, these services that the Alzheimer's Association has and you've been a part of, are they only for people living with Alzheimer's and their care partners?

Beth Kallmyer:
Well, they're certainly for people living with Alzheimer's, but also with other dementia, so vascular dementia or Lewy body dementia, frontal temporal dementia to name a few. There's also information just for the general public. People are worried about, particularly if they have a family member that's diagnosed with Alzheimer's or dementia, one of the first questions I always get is, what can I do? What can I do so that I don't get this? What are the steps I can take to keep my brain healthy? And so lots of times we have people calling helpline or coming to the website looking for information about that.

Dr. Correa:
The Alzheimer's Association is then using Alzheimer's as the leading diagnosis and type of dementia that's out there to advocate for all of the community living with all the different types of dementias and cognitive disorders.

Beth Kallmyer:
That's exactly right.

Dr. Correa:
I would also ask our listeners to go back if you want more information about other types of dementia or Alzheimer's dementia, check out some of our past episodes on dementia. We're building on that discussion that we've had before to talk today about the resources for caregivers.
I wanted then to get to the Alzheimer's Association a few years ago worked on dementia care practice recommendations for geriatric specialists or the specialists who specialize in aging care, and other care providers. But how can a care partner or people living with Alzheimer's use that information to help advocate for their own needs?

Beth Kallmyer:
The dementia care practice recommendations are really evidence-based guidelines for long-term care settings, residential settings like assisted living or nursing homes, as well as in-home care and hospices and day centers. So anywhere that any of those professional providers that are providing services to individuals living with Alzheimer's, those guidelines are appropriate for them.
And if they go again to the ALZ website and look on the professionals' page, care partners can take a look at what those are. And the Alzheimer's Association also has downloadable topic sheets with a series of questions. So if you're making a decision perhaps about maybe it's time to move into a residential community, how do you pick the right residential community for you, and what are the questions that the family members can ask of the care providers in that community to make sure that it's the best fit. And frankly, to make sure that their staff are trained in providing person-centered, quality dementia care.

Dr. Correa:
That's an incredibly interesting topic to start off in, I think everyone would want to know maybe what are some of the top questions that you think people should ask about those residential care facilities?

Beth Kallmyer:
One of the questions I always encourage people to ask is, are your staff trained on a regular basis in providing person-centered dementia care? And ask about the training.
Another question that is important to ask is, how do they handle staffing assignments? Does the residential community try to maintain consistent staffing assignments? Because when somebody has Alzheimer's, the more consistent the everyday interactions can be better for that person. If the nurse's aid that comes in to help them get dressed in the morning, for example, is changing every day, that can be upsetting and confusing to a person living with dementia. So there's evidence out there that shows those consistent assignments make a better experience not only for the person living with dementia, but also for the staff.
Because person-centered care, the whole idea of that is that it's relationship based, that you're providing care as part of a relationship. Just because somebody's living in an assisted living or a nursing home, while they can seem like a hospital setting sometimes, that's the person's home, and you have to think of it from that perspective.
But the idea of person-centered care is that you learn about the person. You get to know them. And whether it's from talking to that person directly or to their family members sometimes to get background information, what does this person like to do? What are their normal habits? When the staff really get to know the person, then they're going to be able to provide better care.

Dr. Correa:
It sounds like even helpful ideas for the people who are transitioning to taking care of a family member at home, to sort of step back and think of what was their routine before and how much of that you can keep or how much have they changed now. You've done so much work to organize efforts across over 70 Alzheimer's Association chapters, and what I imagine is probably countless local communities and community organizations. How are the services different between chapters and states?

Beth Kallmyer:
In general the services are the same. So we have a series of education programs that have curriculum, and the community educators learn that curriculum and deliver that, but it depends on different communities, diverse communities. We do have all of our programs in Spanish, and we run support groups in Spanish as well with Spanish speaking facilitators. And so those are going to look a little different.
And sometimes just in terms of the different partnerships that we have with different community organizations, because that's part of how we can be present in communities and get the word out that these services are available.

Dr. Correa:
That's excellent that you're adapting it with the local community organizations. I'm wondering, for the communities who don't speak English or Spanish, how do you help them engage with and use the resources from the Alzheimer's Association?

Beth Kallmyer:
We have the ability to connect with interpreters in over 200 different languages, so they can have that real personalized support in the language that they speak.

Dr. Correa:
And then thinking even maybe more broadly, how can our society, whether it's state level or federal level, improve in supporting people living with dementia and their care partners?

Beth Kallmyer:
We do talk to Congress a lot and have been very successful as an organization in ensuring that they're funding research into this at the levels that are really required by the number of people living with Alzheimer's and dementia.
So another thing to think about is taking care of somebody with Alzheimer's or dementia is really expensive, and many, many, many families cannot afford to do this. For many folks, ultimately in order to get residential care or even care in the home, they have to go on Medicaid and they have to spend down until... Because that's how our country provides long-term care, is through Medicaid when folks don't have the funding to pay for it.
And frankly, most people, except for the very rich cannot afford this long term. The cost of a nursing home, depending on what part of the country you're in, it can be anywhere from nine to $13,000 a month.

Dr. Correa:
I really appreciate yours and the Alzheimer's Association's work in helping people with the care and support that they need, with the helpline and navigating this system. Our listeners and anyone needing help from the Alzheimer's Association, of course, can go to your website, use the 24/7 help line that we're going to have in the show notes. If there's someone out there who isn't caring for someone in their family for any neurologic condition, but they know someone else who is, what's something that they can do for them to help support them and honor them?

Beth Kallmyer:
I think one of the things we hear a lot from family members taking care of somebody living with Alzheimer's or dementia is that people are uncomfortable with dementia in particular, and so sometimes their friends sort of fall away. They don't come by as much. They're nervous about seeing the progression in the person that they knew. It feels awkward to them. And what I would tell them is absolutely call, ask how the caregiver's taking care of themselves or if they need help, maybe the friend or whatever could come by and stay with the person living with dementia for a couple hours so the caregiver could get out and have a lunch or offer to bring food or stop by. All of those things. It doesn't have to be anything big. Sending a card, reaching out, those types of things can make a really big difference so those folks in those caregiver roles know they're not alone.

Dr. Correa:
That's such a great point. So you've heard it from Beth. Call your friends and care partners or caregivers you know in your community, check in at least even if you don't have time to lend a helping hand. But if you can, I'm sure there are so many things that even the smallest, simplest thing could be a huge help to them. Beth, thank you so much for taking time with us and to talk with us and our listeners about the caregiver support that the Alzheimer's Association provides, the community living with Alzheimer's and other dementias, it's been great to have you here.

Beth Kallmyer:
Daniel, thank you so much for having me. I'm glad you're talking about it, and I appreciated the opportunity.

Dr. Correa:
Thank you again for joining us on the Brain & Life podcast. Follow and subscribe to this podcast so that you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org.

Dr. Nath:
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Dr. Correa:
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Dr. Nath:
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Dr. Correa:
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Dr. Nath:
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Dr. Correa:
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Dr. Nath:
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Dr. Correa:
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Dr. Nath:
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Dr. Correa:
Thank you to our community members that trust us with their health and everyone with neurologic conditions. We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Nath:
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Dr. Nath:
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Thanks again. See you next week.

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