In this episode of Caregiver Conversations, hosts Kristie King and Antonia Harbin Lamb welcome Dr. Florence Johnson, a clinical scholar and research fellow at the University of Michigan School of Nursing. Dr. Johnson brings both personal and professional insight into dementia caregiving, particularly within Black families. From her early experiences witnessing caregiving challenges in her own family to her current work in health services research, Dr. Johnson offers compassionate, practical advice and calls for greater inclusion, research, and culturally informed support. She discusses early signs of dementia, the emotional and physical toll of caregiving, and the urgent need for safe spaces, advocacy, and systemic change.
Guest: Dr. Florence Johnson, Clinical Scholar and Research Fellow, University of Michigan School of Nursing, Institute for Healthcare Policy and Innovation
Hosts: Kristie King & Antonia Harbin Lamb
Topics Covered:
Resources Mentioned:
Dr. Florence Johnson
Email: fujohnso@umich.edu
LinkedIn: Florence Johnson
Caregiver Conversations Podcast: caregiverpodcast@miseniors.org
Senior Regional Collaborative:
Website: www.semisrc.org
Email: info@miseniors.org
Phone: 888-341-8593
Neighborhood Legal Services – Elder Law and Advocacy Center:
Website: www.nlsmichigan.org
Phone: 313-937-8291
Kristie: [00:00:00] Welcome back to Caregiver Conversations where we explore the real stories, challenges, and solutions that matter most to caregivers. I'm your host, Kristie King, executive director of the Southeast Michigan Senior Regional Collaborative,
Antonia: and I'm your co-host Antonio Harbin Lamb staff attorney at the Elder Law and Advocacy Center and Program manager of Great Lakes Legal Mediation division.
Today we are joined by Dr. Florence Johnson. A clinical scholar and research fellow at the University of Michigan School of Nursing, an institute of HE for Healthcare policy and innovation. Dr. Johnson is a health services nurse scientist specializing in dementia, family caregiving. Her research focuses on improving the wellbeing of dementia caregivers, particularly black family caregivers through education, community engagement.
Innovative support services. Dr. Johnson, welcome to the [00:01:00] show.
Dr Johnson: Thank you so much. I appreciate the opportunity to talk about my work. Absolutely.
Kristie: Mm-hmm. So I'm gonna start here with you, which may not be what you thought I was gonna start at, but I'm gonna start at this point. What brought you to this work of caregiving specifically around black populations?
Talk to me a little bit about that.
Dr Johnson: Thank you. So this is very personal for me, this work that I do. Uh, it started back in the eighties, uh, and I didn't even realize this was gonna have an impact on me. My mother-in-law, my soon to be mother-in-law back then was charged with taking care of her sister-in-law, who at the time was diagnosed as being senile.
So my mother-in-law would take care of, um, aunt during the day and then go to her second shift job, come home and start all over again. Although she had seven adult children, the caregiving was mainly on her. And back then we didn't even have home care [00:02:00] services, so she was fully responsible for aunt birth.
And then as I went in into my career as a nurse, um, I started coming across, uh, fa friends who are also taking care of their family members, and they didn't know where to go for help. Mm-hmm. Um, they were drowning. Um, I went into quality improvement and that's where I learned about dementia and the importance of dementia care.
And as I went through my travels, I met family members, even the ones that their person was living in a facility. Mm-hmm. They still struggle 'cause they're still caregivers. They were taking care of their person before they were admitted into a nursing home. Always wanting to have to get my PhD. I took this opportunity to say, okay, I'm helping the folks here that I know in my little corner of Connecticut, but how can I make a bigger impact on a bigger stage?
So I applied to PhD school here at University of Michigan in 2020. I got in, [00:03:00] um, have been doing research since then on black caregivers and how can we. Bring support services to our people to, um, decrease the stress of caregiving. And when they're in that moment, they may not even realize mm-hmm. That there's stress and need help.
So, uh, if I can do something that affects one or two caregivers, I feel like I've, I've succeeded.
Kristie: So when you talk about, you made a reference to, you know, back in the day it was, we used that senile terminology. Mm-hmm. But it was dementia. Yes it was. It was dementia. But that is definitely what we used back in the day.
And as you noted, it can be very challenging to identify early on. Mm-hmm. Um, because it could be, you know, a lot of times family, they're just not acting right. They're just not listening to me. They're just stubborn. It's just all of those things. What are some of the early warning signs that families really should look out for during those times?
Dr Johnson: Think short term memory loss. Uh, someone [00:04:00] having a harder time remembering, uh, family member's name. So they may stare at that person for a while before it comes to them. Um, they go out, they don't remember how to get back home. Uh, they're not dressing the way they normally would've dressed. They could have mood swings.
Mm-hmm. I'll give a quick, quick story. Mm-hmm. My brother lives in the Netherlands and he and I talked every day. He was a nurse and he started telling me stories about not remembering how to get home from work, literally paying people to help him figure out how to get home. Um, he was cooking stuff and would forget the house filled up with smoke.
So from this part of the world, I helped his daughter. Bring him to care and have him, um, assessed. And three years ago he was diagnosed with dementia and now lives in a facility. Wow. So it's important to know your person. Mm-hmm. Know what their, um, everyday, um, existence [00:05:00] looks like. We all forget where we put our key or our wallet sometimes, but when it becomes a frequent situation, um, not remembering how to do daily tasks.
Mm-hmm. Brushing your teeth, um, where's a bathroom, those kind of things are troubling and should be assessed.
Antonia: And Dr. Johnson, are there specific interventions or resources that you can recommend for families dealing with some of those behaviors at home? Or you have any suggestions on that?
Dr Johnson: Yes. The first thing I would say is bring your loved one to the doctor.
Uh, we cannot take care of someone in the dark. We need to know what the disease process mm-hmm. Is that we're dealing with. Um, so that's always my first. Um. Suggestion, bring them to your primary care physician. This is another, um, important aspect of this. Your older adults should be seen by the same person every time they go to the doctor, [00:06:00] because that's when, if they know your person, they will pick up the nuances to say, Hmm, that's a good point.
Mrs. Smith always talks to me when she comes in here about her grandson and what he's doing. This time she can't even remember her grandson's name. That may trigger, um, the physician to do further testing. But if they're saying somebody new every time, they will not catch that. Mm-hmm. So if you have a physician who is not responsive to your questions and your concerns, don't just leave it there.
Sometimes we feel comfortable, oh well, the doctor doesn't really think there's anything wrong, so let's just leave it. Take it a step further. Um, see if there's a specialist within the group that you can, um, talk to about what's going on with your loved one. Maybe it's time to go see a neurologist to find out what are these changes that we are noticing.
Don't wait till the disease process has progressed [00:07:00] so far that it now becomes urgent.
Kristie: Talk a little bit about how these changes impact not only the, um, individual, but the caregiver as well. Because you, in your work, you're, and it's, and I wanna even be a little more specific. Um mm-hmm. The difference with black caregivers, 'cause there's definitely, your work is very specified.
So kind of thinking through that, how does it impact the caregiver? We know sort of how it's gonna impact the individual, but what about the caregiver that's involved, or caregivers?
Dr Johnson: So in our black community, there's actually a research term called the Superwoman syndrome. Where black women feel like I can do this all by myself.
We carry a lot of the burden of care, um, on our shoulders. Um, sometimes family members can, um, be embarrassed about the, um. Outward expression of their person who has dementia. They try to keep it a secret. I [00:08:00] know that's what we did with Aunt Bur. Mm-hmm. Stayed in the house all the time. We don't want anyone about.
Um, so it's important that. The caregiver recognizes that this is a disease that affects not only the person who's living with it or the immediate caregiver, it's a family situation. It's a community situation. People who have dementia can wander off, they can become aggressive. But if you involve the whole neighborhood, the, the whole community, and let folks know.
My mom is staying with me. She has dementia. Sometimes she may wander out and not remember where she's going. Mm-hmm. That is something that the neighbors can help you keep an eye on. Contact the police department to let them know. So if they wander off, um, have a picture with the police department. It can be very, um, [00:09:00] agitating even to the caregiver that I have to deal with my person who's behaving like this.
And all I'm trying to do is help them. Caregivers immediately want to argue with their, um, person. They want to. Um. Re acclimate them to society. So for instance, if I'm Aunt Burke, I was never married or I was married, my husband passed away, and I'm saying at four o'clock, oh, I gotta go make dinner for John.
He's gonna be home soon. It causes more of, um, anxiety for the person living with dementia. If you say, oh, uncle John died five years ago.
Antonia: Mm-hmm. Mm-hmm.
Dr Johnson: So now they're like, what? Yeah, my husband died, and it starts all over again. Mm-hmm. Wow. Mm-hmm. So living in them in the moment with them. Making sure that you create a situation where they know what's coming up every day.
So they like routine. Uh, they don't like to have stuff come up every day. So make sure you do the [00:10:00] exact same thing every day. If they wake up and have a cup of coffee in the morning, don't change that. Do that for them every day. Um, if they take a. Do that for them every day, whatever they used to do before they got the dementia.
Try to keep that going for them. And then recently studies have shown that music therapy. Music, the great equalizer. Yeah. Mm-hmm. It works so well for people living with dementia when they get agitated. Or confused. So you play music from their genre and, and their day and time, they, it just brings them alive.
Mm-hmm. There's been so many videos made about folks living in nursing homes with dementia, never talking before, but then you put on some r and b Motown dancing. They just wake up, start relating. Um, so my, my biggest, if I had [00:11:00] to, two things that I would tell a caregiver. Do not reorient your person. It's just going to, um, cause more of an aggravation.
And then two, don't be ashamed. Make sure you're talking to everybody. Make sure your family members know when you need help. It's not a sign of failure if you ask for help.
Kristie: I don't think we could hear that enough. Right. That to say something to open your mouth and say something. Yeah. Because your family doesn't know.
Dr Johnson: And what you find is that when you have a big family, caregivers just expect that, well, you already know. You already know that I need help. Yeah, but they don't know, but they help maybe. Right? Maybe the help that you need today is literally somebody just bringing a A plate so that you don't have to cook.
Maybe it's them just coming by and sitting with mom or dad while you go take a walk, get your hair done or something. So make sure you are explicit with the help that you need. I
Kristie: think we use this [00:12:00] term respite all the time, and I always say that respite looks different for everybody, right? So respite isn't necessarily taking your loved one to a facility and dropping them off on a daily basis, but respite is literally whatever you need at that moment, however you identify it at that moment.
Absolutely right.
Antonia: And Dr. Johnson, what are some misconceptions about caregiver stress and burnout that people should be aware of at this point? Uh,
Dr Johnson: that's a lot. Yeah. Um, people talk about, uh, caregiver burnout. Sometimes you'll hear folks say, well, that's not a real thing. Mm. But it is a real thing. Mm-hmm.
Imagine taking, doing a job and never getting time off. So a lot of caregivers live with their person. Especially if it's a spouse. Mm-hmm. They don't get to get time off unless somebody else comes to help them. So burnout could just be, [00:13:00] uh, I'm so aggravated that I'm yelling back at my person, and that's not even who I normally am.
Burnout could be you're suffering headaches now that you never had before. Burnout could be. I just feel like I need a nap all the time. Mm. Um, burnout could be, I'm not sleeping at night. Because people who live with dementia, their schedules kind of change. Mm-hmm. Especially at nighttime, they don't sleep well.
So if you're a caregiver and your person wakes up in the middle of the night, you are gonna get up. Mm-hmm. They'll go back to sleep. But now you are wide awake, like, what do I do with myself? Mm-hmm. So, uh, burnout, just like respite could look different for everybody. Burnout could look different for everybody.
It could be that you have a health issue that.
It's now exacerbated because of your caregiving responsibilities. Mm-hmm. And what we've also learned in [00:14:00] research is that. Caregivers are so consumed with giving care and making sure that their person is okay. They neglect themselves. Mm-hmm. They don't go to the doctor to have their physicals. They don't take care of themselves if they have acute symptoms that are coming on because I need to take care of my person.
So being mindful about who you are and recognizing when your equilibrium is off. And then addressing those issues at that time. I always say when I do a presentation, you need self care because you cannot pull from an empty cup, so you gotta keep recharging and, and it's okay to recharge.
Kristie: And it could be a little bit at a time.
Yeah. It doesn't have to, you know, you could be on half and then just get a little bit to take you to three-fourths. So Absolutely. Exactly. A little top off
Antonia: there.
Dr Johnson: So folks need to recognize that we have emotional stress. Mm-hmm. And we have physical stress. So you could, [00:15:00] emotionally, you can just be stressed and have an anxiety.
You can even be depressed and not even realize it. Um, sometimes people have guilt feelings because I. I'm supposed to take care of my mom 'cause she took care of me. But you just don't have the bandwidth anymore. Um, people become isolated 'cause they're so consumed with taking care of their person that sometimes it creates, um, um, separation from the rest of their loved ones.
Uh, and when it's a husband and wife, think about how their relationship now changes. You're no longer mates. You are actually providing care for someone who's no longer the person that you've been married to all this time. So allow people to express their grief for the loss that they have, they are experiencing.
And then on the physical part of it, I talked about the sleep disturbances and just. Feeling [00:16:00] totally exhausted. Um, there's an opportunity, increased opportunity for physical injury, especially if you are having to, um, provide physical care for someone who's no longer able to participate in their own, um, caregiving.
Antonia: Yeah. And we also, as we're talking about the whole self-care, uh, aspect, we can't forget healthcare systems, organizations, communities, how can they do a better job as supporting caregivers and just helping them to not feel alone in this journey?
Dr Johnson: Great question. Um, healthcare systems can include, be very strategic about including caregivers, um, and.
Being part of the care team, they're not, they shouldn't be on the periphery of our discussions. They should be in the center of the conversation because if someone has especially [00:17:00] dementia, they can't participate in whatever care you are giving them if they're being discharged. They can't participate in that.
So we need to include caregivers as part of the care team, making sure that when it comes time for discharge planning, that they're, they're at the center of that, not giving them a piece of paper as they're walking out the door. Include them from the beginning. Um, organizations can provide support programs.
Uh. Counseling, respite, financial support, um, resource centers, create caregiver friendly policies. I have been preaching, um, having a caregiver center at the federal government level. Things are a bit. Things are a bit different today, but imagine that you have an office in Washington where it's all about caregivers and it's driven by caregivers and what they need [00:18:00] instead of somebody else telling them what they should have.
And then communities can facilitate, like local level, um, support groups, community programming that offers like meal delivery, transportation, home modifications. Some communities are doing that. I know in Detroit they have the black elder program that helps with, uh, modification. D aaa, um, the Detroit Area Agency on Agent provides, uh, meals on Wheels.
So some communities are doing that, but we need more. Yeah.
Kristie: Because everyone doesn't qualify sometimes for some of those, those programs. And I think another great point is that I know, uh, more hospital systems are looking at how do we make sure the caregivers are part of the care team. So when we are having that, uh, that that family meeting, that the caregiver is there as well, we're not reporting in the chart, uh, talk to caregiver, X, Y, and Z, but they're literally part of the team.
I [00:19:00] think that's super important as we're moving forward.
Dr Johnson: Can I just add that these community programs and organizations that are offering, um, these resources. It's important that we, um, make sure that our caregivers know how to access those. Um, because there's, I, there are tons of programs out there that people just aren't aware is there, and how do I access it?
And black caregivers especially feel like, oh, I don't need it. Let um, Joe down the street get it. I'm okay. No, we're not. Okay. Take the resources that are being offered.
Antonia: And on along those lines, how do we. Talk to our caregivers and even in the black community, how do we talk to them about accepting those resources or make them more familiar with the resources that are available
Kristie: and just talk about their experience.
Mm-hmm. Being able to share their experience. Yeah. Without that, that shame or that guilt. Right. That may be connected to it for [00:20:00] them.
Dr Johnson: Well, you know, in our community we have this culture of not wanting to talk about mental health. Um, I think we need to create a safe space for our caregivers to be able to, um, be the, their authentic self and really talk about what's bothering you.
Sometimes we, we do more of the talking instead of just sitting back and letting them talk. So tell me about your yourself. Tell me about your caregiving experience. Then just let them open up and then you learn from them what it is that they need as instead of us just giving, giving information ahead of time and not letting them, um, talk about what it is they need.
I think we need, like I said, create, um, safe spaces. For us to be able to hear exactly, um, what the caregivers need. And that's why I conduct what we call qualitative research. Um, where I talk to the caregivers about their [00:21:00] experiences. Um, I try to walk in their shoes to find out what it is, uh, they're, uh, struggling with at this time.
I recently just did a Black history month. Um. Webinar for the Alzheimer's Association in Connecticut. I literally reached out to my network of caregivers to say, what would you want me to talk about today? What would be more important to you? So I built my whole presentation based on what their needs are instead of what I think as a scientist.
Very good point,
Antonia: right?
Kristie: Absolutely. Very good
Antonia: point.
Kristie: Yeah. So if caregivers want to connect with you or learn more about your work, what is the best way to reach you? Dr. Johnson.
Dr Johnson: They can email me at F-U-J-O-H-N-S as in Sam o. Um, UMIC h.edu. I am also on LinkedIn, [00:22:00] Florence dot Johnson on LinkedIn.
Kristie: Is there any advice that you wanna leave with us today before we close out our segment?
Dr Johnson: Yes, I would. Encourage our caregivers, um, that once they get their early diagnosis to please consider participating in clinical trials. And clinical trials don't always mean that someone's gonna draw blood from you or inject you with something. Um, I have a, um. A cohort who does brain studies and she's asking people for the brain after they pass away so that we can understand what's going on in black people's brain.
Um, because our brains are different than the our counterparts to understand what it is is going on so that we can create interventions early on to see if we can slow down this process. And then for the [00:23:00] caregivers to be open to, um, research so that we can create interventions that are what you need instead of taking what's already been built and trying to adapt it to what they, we think they need.
And that's why I don't do research in the lab. I am out in the community and wanting to hear and touch my caregivers.
Kristie: Makes a difference. Yeah, definitely makes a difference.
Antonia: Wow. Thank you so much for being here today. And I forgot to mention Go Blue for sure. Uh, yes. Taking me back, taking me back a few years there.
Yep. So, well,
Dr Johnson: thank you so much for an opportunity to talk about my work. I love what I do. Yeah. And, um, I, I continue to be a voice. For caregivers. Thank you so much.
Kristie: We appreciate that. Once again, Dr. Johnson, thank you so much for joining us today and sharing your expertise. [00:24:00] Your insights have definitely been invaluable today to so many caregivers and ourselves as well as we all just navigate the complexities of managing and understanding dementia care itself.
Antonia: And to our listeners, if you found today's conversation helpful, please subscribe. Leave us a review and share this episode with caregivers and advocates in your community. For more resources and updates, follow us on social media or visit www dot. S-E-M-I-S-R c.org. You can also reach us at info@miseniors.org or call 8 8 8 3 4 1 8 5 9 3.
To learn more about neighborhood legal Services, Michigan Elder Law and Advocacy Center. Please visit www.nlsmichigan.org or call 3 1 3 9 3 7 8 2 9 1. [00:25:00] Until next time, take care and keep caring.