Taking Healthcare by Storm: Industry Insights with Jennifer Fink

In this episode of Taking Healthcare by Storm, Quality Insights Medical Director Dr. Jean Storm speaks with caregiving expert Jennifer (Jen) Fink.

Jen discusses her personal journey into caregiving, the impact of social media on caregiver burden, and evidence-based lifestyle steps to protect brain health. She also highlights the significance of reducing stigma, education in healthcare, and the new GUIDE model by the Center for Medicare Services.

Listen to Jen's podcast, Fading Memories.

If you have any topics or guests you'd like to see on future episodes, reach out to us on our website.

Publication number QI-121225-GK

Transcript

 Welcome to "Taking Healthcare by Storm: Industry Insights," the podcast that delves into the captivating intersection of innovation, science, compassion, and care. 

In each episode, Quality Insights’ Medical Director Dr. Jean Storm will have the privilege of engaging with leading experts across diverse fields, including dieticians, pharmacists, and brave patients navigating their own healthcare journeys. 

Our mission is to bring you the best healthcare insights, drawing from the expertise of professionals across West Virginia, Pennsylvania and the nation.

Subscribe now, and together, we can take healthcare by storm.

Hello everyone, and welcome to another episode of Taking Healthcare by Storm. I am Dr. Jean Storm, the medical Director of Quality Insights, and today we are joined by Jen Fink, a growth leader, caregiver advocate, and keynote speaker who's changing the way organizations and individuals. Talk about caregiving.

Jen is a passionate voice for those caring for loved ones with dementia, and for the millions of employees who balance caregiving responsibilities with their careers. She believes that supporting caregivers isn't just an act of compassion. It's a strategic investment in healthier people, stronger families, and more resilient workplaces.

We are building strong communities. In our conversation, we'll talk about the realities of caregiving for people with dementia, how burnout impacts families, healthcare systems, and what steps we can all take to reduce stigma, something that isn't widely talked about in this space, and also support cognitive health.

We're gonna explore how empathy and innovation can shape the future of dementia care. And something that I am very interested in is what would Jen do if she were in charge of healthcare in the United States? It could be another podcast. What would Jen do? Oh, good Lord. Jennifer Fink, thank you very much for joining us on the podcast.

Well, thank you for having me. I'm looking forward to our chat. Yes. So as I said, you are, you've become a leading voice in supporting caregivers. Both in families and in workplaces. Can you share what led you into this space and why advocating for caregivers became your passion? Well, like most people who are in this, on this path, my mom had Alzheimer's disease for at least 20 years.

My maternal grandmother had vascular dementia and the two of them overlapped. And just to throw in a little twist, my maternal great-grandmother also had dementia, but she passed away before I was born. So I am not familiar with. Anything other than the stories I heard about her through my grandmother.

When my father died in 2017 and I became responsible for my mom, my goal was simply to provide her the most joy, the best quality of life possible. And I quickly learned that was a lot harder than I thought. I thought I knew a lot about, engaging with her and being with her. But when my dad was gone and he was no longer the buffer everything changed.

And I went looking for books 'cause I love to read. And then  there weren't as many books in 2017 as thankfully there are now. And I got the bright idea to look for a podcast. On caregiving. And in 2017 there was one, and for better or worse, it was not my cup of tea. So I started my own podcast thinking that I had a lot to share and I quickly learned I had a lot less to share and I was learning from my guests.

And so that led one thing led to another one of my guests. Persuaded might be a good term into volunteering for the Alzheimer's Association. I started with legislative advocacy, which is significant standing up for your loved ones.  I then moved into support group facilitator, and now I'm a community educator.

So it, it was all because of my mom and wanting the best for her despite a devastating disease like Alzheimer's. Yeah, and I, we often hear that of individuals who are faced with really challenging situations and then they turn them into such wonderful beacons of hope, I guess you could say,  of really pushing people towards helping others in such a profound way.

And I will just say, I did not know that in 2017 there was only one podcast. On this topic. That's crazy. I was shocked. I was very shocked. And I thought, okay, fine. There's one  she's still around. She has a great business. It's just not everything is for everybody. I'm a tea drinker, so I'm not like a Starbucks person doesn't make Starbucks bad, just not for me.

I love that. So  caregiving is, such a  difficult. Subject. I think for some people, because of the emotional toll that we hear about and social media can sometimes add pressure or create unrealistic expectations. How do you think social media affects caregiver burden, especially for individuals caring for loved ones with dementia?

I think you have to be careful how much of it you consume, like all social media. When I was caring for my mom,  my mom passed away at the start of the pandemic. So that's a whole other show. You did not share your loved one on social media. You could talk about your struggles, what you were going through, and hope that you got a good hey, I try this  some good advice.

I personally  especially on Facebook, there's hundreds of  private group pages for caregivers and I would see responses that I didn't think were good. And you don't wanna like get into an argument with people online. That's just a waste of time.  There'd be a lot of prayer, hands, emojis and all.

 It's like, how is this helping people? There's a hundred responses and half of these are garbage, and the other half. Do they even have time to read through all of this? But when you're o on  other platforms that are more visual, like Instagram  there's very popular caregivers.

I know them totally respect them, but they're showcasing their daily life, their experiences with their loved ones, and. Out of respect for their loved ones. They don't show the nasty parts because you know they don't want to. And that's totally fine. I don't really wanna look at the nasty parts either.

And it's, I think it makes it, they make it look easy or like it's not as challenging. Now they do share the challenging parts. They'll verbalize it they'll comment that. I'm showing you what I choose to show you. You don't see the, the hard times or the times I'm breaking down and all that, and so that's helpful.

But if you miss those posts or those videos where they talk about that it just looks easy.  And you've got people who are in the  professionals that do little cute skits that just make it look. And then, I don't know, maybe it's just me. I don't think so, though. I've had conversations privately with other people who feel the same way that  they try these things and it doesn't work, and then now they've added to their caregiver guilt, which caregiver guilt is just a crazy.

Crazy thing. It's like we're doing the best we can. Nobody trained us how to be caregivers. We didn't sign up for this. We didn't plan for this. Most of us have not had conversations with our loved ones.  We talk about retirement years, but we don't talk about the aging years when you are likely to need care.

We avoid that part, and all of a sudden now we're having to do things that. We're not comfortable with, we're not equipped to deal with, but we're doing it. And yet we feel guilty because we don't think we're doing it well enough. And so I, fear sometimes that social media makes the caregiver guilt worse.

You can get a lot of good advice too, but you gotta be really careful. Yeah  I would agree. I think it's virtually impossible to get a holistic view of a situation in  caring for an individual with dementia or cognitive impairment in, I don't know how long Instagram gives you, like 60 seconds, or, I can't, maybe it's longer.

Yeah, it's longer now. Yeah, it's impossible to get a good I idea about  and no one's going to, obviously, like  I would think you'd be a terrible person if you put up a video of your loved one who was acting you know? I mean, I've taken care of many individuals in nursing homes who have dementia and there's a lot of really challenging behaviors and if this was happening in the home, you'd be a terrible person to put that video up on social media of your loved one.

So. I don't know if it's, I have yet to determine, I think if it's good or bad. And I agree with your, the prayer hands and thoughts and prayers, and I think prayers are wonderful, but I don't know, saying thoughts and prayers and comments, if that does anything either. I don't feel better when I see those kind of emojis, so I, I just assume other people aren't.

Necessary. You know, They might be like, oh, that's nice, but that's not helpful. The one good thing about social media is it's kind of blown open the doors.  Like I said, when my, I was caring for my mom, you absolutely did not show that stuff online. You get canceled, which is not a term that we used back then, but that's what would've happened.

You would've been blasted off the internet. But now that they, people are, and  the ones that are doing it well. If that's the right word. They've really helped reduce the stigma. They've helped people understand this is what it's like. This is what's going on. And I wanna talk about stigma, but first  I wanted to talk about brain health.

I think that is a huge  buzzword buzz, two buzzwords recently. Everyone is talking about how can you prevent dementia, all of these things. So for listeners who really want to protect their brain health, what are some simple evidence-based lifestyle steps that can help prevent or slow cognitive decline?

If any, anybody, if anybody out there has heard me talk about this, you know what's coming. You got to eat right. And I'm gonna say it, even though they don't talk about this one as much. I think because it's not culturally cool, there is no amount of drinking that is safe on an aging brain. So you like your brain.

Maybe give up the wine and the beer. That's your choice. Eat right, exercise. And we're gonna come back to exercise. 'cause I learned something a couple weeks ago that, that blew my mind. Literally. You have to manage your stress. 'cause stress is toxic for your brain.  Stay social, stay active.

What else are we doing? We're eating right. Oh we need to sleep well. We need to have good sleep. Hygiene is the phrase they use. I really don't understand hygiene, but.  We need to make sure that we go to sleep and stay asleep for as long as possible.  If you're like me and you have tiny bladder, there's at least one time a night I wake up to use the bathroom.

But then you don't want to do that and then toss and turn for an hour trying to go back to sleep. So the things that happen in your brain and to your brain while you're sleeping are, really, really crucial. So, coming back to the exercise. Until very recently, it's been  get your heart rate up, break a sweat  do that  five times a week for 30 minutes.

Walking is great.  In my community there's groups of ladies that walk together. Um, You can hear 'em coming. I am a Peloton fan, so I hear them over the Peloton. Another recent discovery is that for aging women, so I'll be 59 in November, not too far, like a month from now. Strength training is extremely good for your bones.

Your balance and your cognitive structure. So it actually helps you grow new neurons, which is the connections I believe, that let your brain do what it's supposed to do. But there was a recent study, the pointer study that the Alzheimer's Association funded and they actually discovered it was a, not a huge study, but it wasn't small.

It's like a medium sized study. Balance and stretching exercises were just as beneficial as the cardio and the strength training for brain health. So like Tai Chi or just I. I do all of it. I don't do Tai Chi, but I, I do cardio. I'm a cyclist. I have the Peloton bike, I do strength training.  I'm getting old, so if I don't do 10 minute full body stretches, there are times I start to feel like a crumpled up piece of paper and that's not fun.

So 10 minute full body stretches. Sometimes I'll do a 20 or 30 minute evening stretch, which is designed to wind your system down and prepare you for sleep. I've learned. Get everything ready for bed. Brush your teeth, wash your face. Then do the bedtime stretches, then plop into bed, and you go to sleep a whole lot faster when you do those stretches.

So stretching is really an incredible thing we should all be doing if we wanna age well physically and cognitively. I love those tips. You are speaking my language. It wasn't my language like 15 years ago. I was  not an exercise fanatic, but I  back in my photography days, so I'm a retired portrait photographer.

I had a doctor who was a client. My dad's side of the family is just type two diabetes, wall to wall. I was severely overweight and she looked at me and we were just, we were basically having a conversation. She wasn't acting in her  doctor capacity. And she said, well, you're overweight. You have a family history of diabetes, you're screwed.

And I was like, no, I'll show you screwed. I'm going to figure out what it takes. To lose the weight and keep it off. And I did.  It wasn't easy. It took about two years and in that amount of time to, to learn what my body needed, to stay at a reasonably healthy weight and feel good.  I also learned that I need some exercise, some movement in the morning to get my brain going.

Yeah. Wake up. Brain get. Yeah, I agree. So I mentioned we wanted, I really wanted to talk about stigma. It is a major barrier to early diagnosis and open discussion. I don't know if people realize how. Long people live in silent suffering knowing that there's something not right, but they don't share it. And because there is such stigma around sharing a diagnosis of cognitive impairment.

So why do you think stigma persists and, what can we do?  People listening, if you're family member, healthcare provider, and communities to change it. I think we need to, one, we need to understand that there are normal age related changes in the brain. Forgetting where you put something, but being able to retrace your steps and find them is normal.

 I am horrible with names that is normal for me. Might not be normal for you, but forgetting family members. Plans that we just talked about this you know, like, I know I have to pick up the dog from grooming afterwards because that's what's on the schedule. But if I forget that and I have to be reminded, like the groomer has to be like, Hey, can please come get your dog?

That's kind of a sign for worry. So I think we need to start with, we need a lot more education. As a culture, but also in our healthcare profession. Because one of my past podcast guests, I had two doctors, one of which teaches at med school. And so I asked them, I said, the dementia community is pretty sure we know this answer, but let's get it confirmed.

How many hours do doctors get in training in med school on dementia? And the response was Zero. Which is what we assume as dementia caregivers because that's what it feels like. Like we know more than the person who you know, spent all the time and all the money to become a doctor. They don't know and it's frustrating.

So we need more education. We need to understand what is normal age related changes. 'cause your brain does slow down, kinda like an older computer.  It'll do all the things, but it, it doesn't necessarily do some of the newer stuff very well. 'cause you know, your processor's a little slower. That's pretty normal.

But   changes in personality, changes in mood having the. Struggles doing everyday tasks. That's not normal. There's 10 warning signs and I teach that a lot. You think I'd remember all 10, but I don't. So we are gonna start with education. The more people that understand this is normal, this is not, then we're not.

Trying to hide that. We have an issue for fear that, oh my gosh, is this dementia? Is this Alzheimer's? You know, There's over a hundred causes of dementia, so some of them are reversible, and if we catch it early, we do now have treatments. I just met a gentleman who was in the trials for the Leqembi drug, which is the second drug that was approved for use.

10 years later, he's flying across the country talking at a brain health forum that's being held by our Congressperson and Alzheimer's Association in Sacramento. And then he flew to Southern California for another talk. And I guarantee you, if you didn't know, most people would never guess that he had cognitive problem and he'd been on  the drug for 10 years.

Now it's gonna become like an at-home injection for maintenance. So we've got that going. So the other thing is, is if we know what's going on early enough, we can implement some of these lifestyle changes.  Maybe we can stop having a six pack of beer at night like somebody in my household does.

Or we can start eating better. We can add those balance and. Stretching exercises to our day because those are a lot easier to add than weight since cardio. Yeah, I agree. And  I've also talked to neurologists who said my mom was in a car accident in December of 91 and she started showing signs, 95, 96 of cognitive issues, and she was like 53.

To really, really young. And I've always thought the car accident, 'cause she hit her face hard enough on the steering wheel to damage the nerve that comes through your cheekbone. And I always thought  that had to have been some kind of trigger and a couple of neurologists agree. And they said, had we known at the time, obviously we didn't know as much in  92, 93 as we do now.

She could have implemented the lifestyle changes and maybe slowed the progression of her disease, although her progression was already really slow  and when it comes to drinking, my mom was great at two liters of Diet Coke a day. She could have stopped that too. Not just alcohol. You know, Diet Coke in that quantity is not great for your brain either.

Yeah. So kind of related from your vantage point, are we doing enough as a society to address dementia? I mean, we're talking about it more, you know, both in supporting people living with the disease and those who care for them. What are we getting right and what are we getting wrong? What are the biggest gaps?

Well, I think we're getting it right that we're talking about it more, which is reducing the stigma so that if you're out with your loved one. And they're acting different. Or oddly, people might take a step back instead of assuming that this person is drunk or this person is high, or whatever, you know, like whatever negative thought they might wait.

They might be like, wait one second.  They might actually have a disease. And that helps a lot because if you're. Loved one has a meltdown in the grocery store and people are like filming you or whatever, doing  they're not helping because they don't understand. That's not gonna help anybody.

But now if they understand, maybe they can, be like, oh, you know what? I bet you the loved one needs to see a different face. They're, they've had it with this loved one. Let me see if I can step in and help. My grandmother was like this, or my neighbor was like that. I get it. The other thing too is that we.

If we, the more we understand about the disease and the more we understand about aging, we reduce the stigma, we become better community helpers.  I've been out in the community and people will ask questions like, I always joke, I'm the fun girl at parties. It talks about Alzheimer's. It's going that direction.

We need the education we need. Everybody to understand, hey, this is what dementia with  my father or my mother looks like, or my spouse, and it's okay.  And then people can step into that world. There was, I have a past guest who would take her dad to out to eat regularly. They'd go to his favorite restaurant.

The restaurant knew what was going on with him. Escorted him to his favorite table as quickly as possible. They knew what his favorite items on the menu were. They just, they knew how to deal with him, and so their interactions were better because they. Knew how to cope with him. He was having a better time.

His daughter, who's caring for him in the last year, year and a half of his life is having a better time. Just, it just makes everybody's life a little bit easier, and we should all be doing that as a community.  You know, We always say it takes a village to raise children. It takes a village to raise your aging parents.

I agree. Yes. Yes. So now lastly, my favorite question. If you were in charge of healthcare in the United States, and it's in quite a state now, I think, what would be your top priorities to better support people living with dementia and their caregivers?  Well, fortunately we have, we did get a, pretty big change July of 2024.

The Center for Medicare Services looked at the numbers and basically went, oh, holy bleep, we better do something about this, or we're gonna be in big trouble. I already think that's kind of the case, but hey, better late than never. So they came up with the guide model, and guide stands for guiding Improved Dementia Experiences, and it's, a whole person care, so it's not just.

You're having outbursts every afternoon. Let me give you a psych, it's a psychotropic drug, I think is the right word. Maybe we can get some education, get learning about what's going on. See if we can figure out why you're having freakouts at four o'clock in the afternoon every day.

It also helps take care of the person caring for the person with dementia, including $2,500 a year in a respite grant, which you know, you can do it a week. If you're like me, I would dole it out.  So like every five to six weeks I had a nice you know, two or $300, wad to spend on a maybe like a, really nice 24 hour spa day or whatever I needed to do.

So it's, we're getting there, but we need to, go back to the basics. We need to educate primary care physicians not just the younger ones. Some of the older ones also start having  age related memory issues. And they just kind of assume that other people are like them. It's  oh, it's just, it's normal.

It's age related, and they kind of brush off the concerns. But we need primary care physicians to really understand the warning signs of Alzheimer's and other dementias. 'cause they're kind of similar so that if a family member brings in somebody like this happened with my dad. My dad told my mom's.

Primary care physician that he had concerns and she just ignored him. Now, this was in the nineties, but just ignoring his concerns was really bad. Doesn't matter what decade it was, if they understood what was going on. I think we could start getting earlier diagnoses. We could start doing the interventions with  the lifestyle changes because I am not kidding, as soon as we got these FDA approved drugs and the Alzheimer's Association is cheering, we're in the era of treatments now.

They pivoted so hard to lifestyle interventions that I thought we were gonna break a neck.  Because they really go hand in hand if you're gonna do the treatment drug. You really should do the lifestyle changes too. It's kind of obvious when you think about it. So we need people to understand it all the way through.

 I took my mom to get blood work and I explained to the gal that she needed to talk to my mom slowly and ask one question at a time. I did tell her my mom has advanced Alzheimer's. You need to ask questions one at a time. Wait for her to answer. It's fine. We get into the blood draw room and she goes, can you tell me your name, first and last name, and your date of birth?

It was so fast. I barely understood her and I looked at her and I was like, I just explained to you what needs to happen. Like I told you how to work with this patient.  Did you just blow me on off or ignore me? It was so frustrating 'cause she could have triggered. Anger in my mom and not cooperate.

 My mom might not have cooperated. So everybody all across the healthcare, whatever our healthcare system needs to understand normal aging and what looks like dementia. What can be done? How do we engage with these people so that we don't trigger. Their caregiver having a meltdown or them having a meltdown or everybody having a meltdown.

Yes. Just make everybody's life easier if we really understood what we were dealing with. Yeah, I agree. Let's prevent everybody from crashing out. Yeah. Let's yes, protect everyone. Jennifer Fink, I love this conversation. I feel like we could talk for a long time and maybe we'll have you on again for a part two.

You also have a podcast. Can you tell us what your podcast is and where people can find it?  My podcast is Fading Memories. You can find it on all of your favorite podcast players New episodes every single Tuesday. I'm also on YouTube in case you wanna watch people have a conversation. That's up to you.

I'm on all the social medias. You can go to my website, which is fading memories podcast.com and you can find me under Alzheimer's podcast on YouTube and Instagram and my, under my name on LinkedIn. Awesome. We will link all of those in our podcast page. I appreciate that. Yes. Thank you so much for joining us today.

I love the conversation. Thank you for having me. 

Thank you for tuning in to Taking Healthcare by Storm: Industry Insights with Quality Insights Medical Director Dr. Jean Storm. We hope that you enjoyed this episode. If you found value in what you heard, please consider subscribing to our podcast on your favorite platform.

If you have any topics or guests you'd like to see on future episodes, you can reach out to us on our website. We would love to hear from you.

So, until next time, stay curious, stay compassionate, and keep taking healthcare by storm