Phil Lofton

Bonus Episode: Songshape Chorus

Transcript

Phil:

Hey everybody! 

On today’s bonus episode we’re going to talk about a very unique choir, the Songshape Chorus.

It’s a choir that focuses on the humanity of people with Alzheimer’s disease, and creating communities for them and their loved ones.

Welcome to the Problem, I’m your host, Phil Lofton. 

[Theme]

Meet Rick Cobb.

Rick Cobb: 

Music has always been a big part of my life. 

Phil:

Since 2016, Rick has been developing choirs in Indianapolis through his overarching program, the Resonance Initiative. In the last year, Rick’s shifted his focus to include a new group.

Rick Cobb:      

So I’m, I’m a big reader and I’m very familiar with Oliver sacks actually who’s a, a music therapist and has written several books and, several lectures. And so, I’ve really appreciated his ah, perspective. I came across a documentary called Alive Inside that I highly recommend to everyone that’s listening to this particular podcast that tells the story of a gentleman who puts together play lists for people that are in assisted living facilities. And you just see them, you know, crumpled up, curved over in a wheelchair and then he puts on a headset and they just, they come to life. And I was a very impacted, just real quickly, I’ll just share, just even the opening a scene where he asks this just sweet African American lady. So, tell me about your childhood. And she says, Oh gosh, you know, I don’t remember much about my, my childhood. I, I wish I could help you, but I can’t. And he said, well, that’s okay. Well let me, let me put these earphones on you and let’s just continued to talk. And he puts in Louis Armstrong’s, the saints go marching in and she immediately, there’s a smile on her face and she says, Louis Armstrong, The Saints Go Marching In. I remember we would go down to the corner store, me and my sister and Mr. Rogers, he’d give us some candy and we just had a blast. And then we would go over to our friend’s house down the street and she just, I mean, just could not stop talking, whereas, you know, two minutes before she, she wasn’t able to speak. So again, this quickening art. And so that was made a huge impact.

Rick Cobb:      

So another project actually, which just started, the beginning thoughts or the seeds,  that began to be planted back in January, is a chorus for those that have been diagnosed that are in the early to mid-stages of dementia and Alzheimer’s and their care partners.

Phil:

Oh, so it’s not just patients, it’s caregivers as well.

Rick Cobb:

That’s right. Exactly. It’s for, it’s for both of them. And in fact, Phil, I thought, that the most impact would be made by those that are dealing with the condition. But these last seven weeks, I have just experienced that it’s just as much of an encouragement, an impact on those care partners who give, Phil, unrelenting care day in and day out. And so, it’s just a way for them to kind of connect with their loved ones in a different way. 

The music that we’ve been working on has come from, the patients themselves. And so, it’s been an amazing journey. But what does rehearsal look like? Well, we have, have, have a blast. So, we meet weekly for two hours, actually 90 minutes. And so, we have a time where there’s kind of an opening song ritual that they all know and, and sing and then about 45 minutes where we work on repertoire, the music that we’re preparing for our performance. And then probably the most important part, Phil, has been, we have about 20 to 30 minutes of socialization, so refreshments, food. And so, I don’t know if they’re coming for the, music or for the food, but I’ll take it.  but it gives an opportunity for the care partners to, rub shoulders with other people that are in the exact same boat that they are.  

Because we’ve discovered, that once someone is diagnosed or as dealing with dementia and Alzheimer’s, their life becomes more narrow and narrow and they become more isolated. Not only does the person that has the condition feel that way, but the care partner as well. And so being able to come, to be outside of their house to engage in community life, that they’re still vital part of, of just their neighborhood and, and, and all that they’re involved in. So, it’s just been great for them to kind of swap stories and to encourage one another and develop relationships and friendships as well. I just love to kind of hear people laugh and talk amongst themselves at the tables after our rehearsal.  it’s just been…it’s been a gift, actually.

 

Phil:

Back in November, the SongShape Chorus held their first concert in an old, beautiful church in Indianapolis.

 

I sat towards the back to record the songs we’ve been listening to today, and while I expected a good performance, which I got, I couldn’t have been prepared for how powerful it was to hear the individual stories of the patients and caregivers, many of whom shared in between songs.

 

Shannon:

Good afternoon, my name is Shannon Buelt. After raising three sons and teaching religion at Brebeuf Jesuit for 15 years, I started having memory challenges about four years ago. I was diagnosed with dementia in the summer of 2008. All in all, I’m doing pretty well.

Rick Cobb:

We need the arts and we need music just as much as we need air to breathe and water to drink and food to eat. It’s so vital, and that are in this particular season of life definitely can benefit and experience hope and joy again through the gift of music. And there were lots of stories from people from the giving voice course in Minnesota that just so sharing those stories and then just hearing some of their performances.

Phil Lofton:

To talk again about like what you were saying about like the inherent isolation that this disease has both on the patients and the caregivers. Yeah. This seems like such a powerful way to fight that. It seems like such a powerful way to fight that and not just fight it, you know, amongst the people, but to help de-stigmatize it too, right? Because it’s a statement. You know, I am still here. I’m still part of this community. If you have Alzheimer’s, if you have dementia, you can still contribute. You can still be part of something beautiful. That’s amazing.

Rick Cobb:

It is amazing.. Yeah. There’s [inaudible] their humanity is retained and it’s almost like that music defies dementia. It is powerful.  and it just breaks down that isolation, which again, I think is just so important even as we think about our society and cultural in general, that we all kind of have our itunes playlist and it becomes, very individualistic, right? And so even the act of making music together live is almost like an archaic idea. But that’s one of the things I love about a choir is that, people are using their live instrument. No purchase is necessary, and everyone has a voice. And a having people come together and to experience it in a communal way, is, is important. And we can’t lose that. And it’s a lifelong activity.

And I’ve even come back to music and song, Phil, in very difficult seasons of life, experienced some health issues and just some career difficulties.  and I couldn’t make sense of what was going on, but as I was able to connect with my music and even connecting with song, my story at that particular time was still unfolding. I may not have understood it or wished I had a different story, but I needed to let the music continue, and to unfold. And now looking on the other side of it, it’s just made my outlook not only on life, but even my understanding of music as something very vital and necessary, hence SongShape Chorus is so important.

 

Songshape Chorus, would not be able to do what it does without the help of CICOA and dementia friends of Indiana, Dustin Ziegler has been a tremendous help in that way and bringing a lot of people together early on at the table. Sound Minds, Dr. Tim Brimmer, professor of music at Butler and Doug Everage, have also been a tremendous help. I’ve had the opportunity to meet with the musical therapists, music therapists, Alegra Sorley the great American songbook foundation has given some input as well before we launched as far as, just helpful resources and resourcing in what this question would look like.

 

Actually, like, so I have two grandparents that had dementia, and this was, gosh, maybe 20, 30 years ago.  And just, watching them and of course there weren’t the resources that are available. And watching my parents go through that was a very difficult, but I do, I do remember there’s a special moment that, I remember about my grandmother, my mother’s mother, who was in assisted living and we’d go to visit and she was just kind of lifeless. But there was one time where they were playing music and she got up and there was a nurse that was there and she began dancing with this nurse. And it was like, she was a little girl. She was laughing. And I’m just having a wonderful time.

So even that moment I think, was planted in the work that I’m doing now, and you know, it’s nothing, but as we look at the future, because I think right now the statistics say that 5.7 million Americans deal with Alzheimer’s or dementia with the projection of 16 million by the year 2030.  as we see the boomer population, I’m experiencing that.  and 70 to 80% of people that are, that are living with the condition are living in our neighborhoods.  and so again, just reaching out.  but yeah, my, my own story, watching my, my grandparents, my two grandmothers go through that, was difficult, you know, didn’t understand it.   but now, you know, as I look back, you know, again, that unfolding story, if you will, being returned back to, in my own experience, seeing how music brings hope brings joy, brings the opportunity to be present in the moment.

For millennia, people have been telling stories and singing songs. We live storied lives. What can we do to honor our stories, share our stories with other people, listen to other people’s stories, be curious about their stories. And so, I just love every Friday. You know, as I look back over these seven weeks, I just have a collection of, of new stories of people that I’ve come to love and appreciate and to see them as human beings, not as someone that has dementia or is dealing with Alzheimer’s.  so very grateful and it’s such a privilege. 

Phil:

To watch a video of the Songshape Chorus’ performance and to learn more about the choir, visit this episode’s page at regenstrief.org/theproblem

Join us next time, when we explore diagnosis and screening for dementia – what it takes to do it well, and how to support families in crisis.

We’ll see you then, on the problem.

Music this episode was, of course, by the SongShape Chorus. Our theme and additional musical cues were written and performed, as always, by Ominous Vegetables.

Bonus Content

Watch the Songshape Chorus’ premiere performance:

Season 2, Episode 5: Alzheimer’s and Patients: Challenges and Changes

Transcript

Phil:

 

 So like, you know, you talk all about like her always being there for your recital, and dance making her so happy and stuff like that. Was she a dancer when she was a kid? 

Mindi Winnie:

You know, that’s a really good question. I don’t believe so. I do know that she  used to race cars, though. 

Phil:    

What? 

Mindi Winnie:

 And not like… 

Phil:

Like street racing? 

Mindi Winnie:

Yeah, street racing. Which is so crazy. Cause it’s like, you know, the grandma I knew when I found that out I was like, “What?” Like she was just never really the type to like leave her comfort zone very much.

Phil:

There are six million Americans living with Alzheimer’s disease right now.

They’re in various stages of disease progression.

For some, they may have just received their diagnosis, and they’re embarking on the beginning of a long journey. 

For others, they’ve lived with the disease for years. They’ve worked with their loved ones to inform them of their care wishes, and they’re navigating life while managing the reality of cognitive decline.

Others still, are toward the end of their progression, receiving care in a supervised environment, perhaps able to speak, perhaps not.

Today, we’ll talk about some common struggles patients with Alzheimer’s face, as well as some ways that different groups face greater difficulties during their journey through Alzheimer’s.

Welcome to The Problem, I’m your host, Phil Lofton. 

[THEME] 

When it comes to life with Alzheimer’s, there are a wide variety of tasks that can cause trouble.

Dr. Chris Callahan, former and founding director of the Indiana University Center for Aging Research at Regenstrief Institute, had this to say about how Alzheimer’s can impact daily life.

Chris Callahan:
If you think about in the United States what it takes to live independently, we typically think, “Well, you need to be able to take care of your basic needs like bathing and dressing and eating.”  but you also need to live independently to take care of some higher functions. Like in many cities, you need to be able to drive, you need to be able to manage your finances. And you might also need to be able to engage in complicated decisions, for example, financial decisions but also maybe medical decisions or personal decisions.

These areas begin to get impaired with Alzheimer’s disease. And so, you might, incorrectly underestimate the risk of something and that might put you then at risk for fraud. So, someone might call you on the phone and in your impaired state you might give out your personal financial information or you might even exchange money.  you might be having trouble with visual-spatial cues or with planning and that might be coupled with poor vision, and maybe you’re weak from arthritis and now your driving becomes impaired. And maybe you’re having driving accidents. Or maybe what’s happening is there are poor judgements that you’re making in the home,  that are connected with a memory like leaving the stove on, a small fire in the home, leaving the doors unlocked at night.

These kinds of problems are what families will often bring up in addition to the memory problems. Now the memory problems can be frustrating just by themselves. Some will be “He or she tends to retell the same story” or “I have to tell him or her the same thing multiple times.  for example, I had to tell them six times yesterday and three times this morning about their appointment today, and even when we got in the car, they asked where we were going.” So certainly your memory is connected with your ability to do many of these tasks.  and so what we are looking for are those patients that have trouble with memory and some of these other tasks, but now it’s impairing their day-to-day function.

Phil:

Beyond memory, one of the ways that Alzheimer’s can significantly impact day to day life in older adults is through changing the way that they can interact with their spaces. I spoke to Dr. Dan Bateman, Regenstrief scientist and Geriatric Psychiatrist about how Alzheimer’s affects patients’ ability to live in their homes.

Dan Bateman:

In a lot of dementias, definitely in the case of Alzheimer’s disease, people have more visual, spatial difficulty, so they have trouble estimating distances.  And so that can be an impact. In Parkinson’s disease people also have a lot of trouble with visual spatial estimation. So    people might bump into doorways more frequently.  Not just necessarily dementia, but in a lot of older adults, it’s really important to have a safe home situation, meaning like no rugs at the bottom of the stairs, looking for fall hazards or tripping hazards, having well-lit areas. All of those things are important for any older adult in addition to people with dementia

Phil:

Dustin Ziegler of Dementia friends and CICOA, shared a little more about specific areas that can cause trouble for seniors.

Dustin Ziegler:

A healthy brain takes for granted things that we do every single day without thinking about it. So, if I want a glass of water, I know to go to go to the kitchen and pour a glass of water,  just, you know, an example that’s a very real-world is that, you know, sometimes if you have advanced dementia, it could easily be missed that bottle of water, the intention of that could it be easily mistaken for a bottle of bleach or you know, something else. And, and so because of the cognitive impairments, everything becomes a factor, and that’s why the caregiver is such a crucial component in that as well. So the good thing about that though, even though dementia has such an effect on health and wellness and conditions, there’s a lot of interventions and a lot of things that we have control over as long as that plan’s in place and people know what to do and how to navigate it. 

Phil:

And, and specifically with regards to the home, what are some things that you wind up having to change in your house? Like are there rooms that you have to repaint? Are there carpets that you need to change?  what sort of physical changes have to happen?  Generally speaking because everyone, every case of Alzheimer’s is different.

Dustin Ziegler:

 

Yeah. Yes to all above. So, because how the disease affects the brain – things like contrasts, so color contrasts – if you and I walk into a restroom and the floor is white, the walls are white, the toilet’s white, the sink’s white. A normal brain has the ability to contrast those things. Somebody with dementia because their brain’s not working like it used to may walk into that room and just see a white blur. And then of course that can lead to fall risks and other dangerous situations. Or for example, you take that same situation, but let’s say you have a black circular rug, somebody with dementia just, and I know it sounds peculiar, but this is how it works, they may perceive that as a hole in the floor and not want to approach that area.  so absolutely, patterns, shadows, textures, sounds, it all plays a role into how they perceive their environments, both to the extent of what can be a risk factor, but also to the extent of knowing these things, what we can do to modify those environments very simply, actually sometimes at low cost to,  to make their environment much more safe and sound for, for the person living with the condition.

Phil:

 

In addition to issues with spatial recognition and environmental factors, seniors with Alzheimer’s are also at greater risk of being victimized either financially or physically.

 Life with Alzheimer’s can be extremely difficult for patients, no matter what their social status, race, orientation or gender might be, but to take a more intersectionalist approach, there are groups within the Alzheimer’s community that face additional challenges on top of those that face all Alzheimer’s patients.

Latin Americans are 50% more likely than Caucasians to develop Alzheimer’s; African Americans are twice as likely as Caucasians. What’s more, in both of these groups, a formal diagnosis is less likely to occur, and if it does, it’s more likely to occur later in the disease, when costs of care are most expensive.

Current research doesn’t suggest that these differences in disease rates between ethnicities are entirely genetically caused, though there may be an association with some of the systemic issues facing these groups, such as limited access to healthy foods and healthcare. 

It’s not just missed or late diagnoses, though, that are the problem. We also have a lack of representation of these communities in our research.

That lack of representation can have serious consequences for drugs that are developed, interventions that are tested, and far more. I talked to a titan of Alzheimer’s research, the late Dr. Mary Austrom, of the Indiana Alzheimer Disease Center, about this, in an interview this past summer. She explained how her organization, especially the community engagement core, works hard to combat exclusivity.

Mary Austrom:

In our Alzheimer’s Center, we’ve developed a wonderful community advisory board of minority leaders. And I think too, really, it’s kind of my community-based Participatory Research Work I’ve done now for many years. If you’re really doing it right, we are a team and we’re really working together and I believe our community advisory board does feel that they’re really part of the team. I feel they’re an integral part of our, our success in our work with the minority community.

Phil:

So the, the benefit of diversity in research though, it doesn’t just end at making sure that you have a population that is reflective of, that you have a, a patient population that is reflective of the actual population. There’s more to it than that, isn’t there? Like if you have a population that’s out of whack for that, for a drug trial, you don’t have an effective drug.

Mary Austrom:

Well, you’ll never know. You’ll never know, that’s the thing. And that of course is one of the arguments if you will, or some of the education and awareness building. And it’s particularly relevant for our populations of color around dementia and the aging brain because what we’ve learned to date is populations of color seem to be at a bigger risk for dementia, for some other, you know, comorbidities and other health-related reasons. A lot has to do with you know, heart disease and cardiovascular disease seems to be, more, more rampant prevalence in African Americans. It can be due, certainly due to genetic differences, but diet and environments, etcetera.

What we learned early on from our community advisory board was they weren’t aware of the different risk factors and they’ve become very passionate about sharing that reality, because if they themselves don’t get involved, it’s a real disservice then to their own communities. What if there is a treatment that doesn’t work in the majority population but would’ve worked for them if they’d been more involved and engaged in the research? Or vice versa, we find a treatment that works, but it doesn’t work in that population and we need to keep searching.

We kind of never know if we don’t have a representative group in the study in the first place.

And they’ve helped us address some volunteering among older African American adults in the community. We’ve published together, and it’s very rewarding and I think you’re right; it heals the community.  but the relationships I’ve made are probably my favorite thing. And I love visiting that group. And,  I know, they, you know, I know that they love having me out there and their directors are just so supportive and, and tireless advocates for their, for their seniors. And, and you know, I guess I’m equally passionate about our elders.  I’ve always felt they are the, you know, the backbone of our culture and of our society. They’ve given so much to make, you know, our country what it is, our communities what they are. And I think as they get older and frailer, we tend to forget them. 

Phil:

Members of the LGBT community experiencing Alzheimer’s also face additional struggles with regards to their safety in communities and making sure their wishes are respected. 

Here’s Lexy Torke, Regenstrief Scientist and head of the Evans Center for Spirituality in Healthcare. She’s a national voice on LGBT care for older adults. 

Lexy Torke:

Older adults who are facing Alzheimer’s disease or any kind of related dementia face so many challenges in terms of changes in their life, changes in their relationships with family, and it may be even more challenging for individuals who are LGBT for a whole variety of reasons.

One thing is, is that their family structures are likely to be somewhat different. Some now of course are married. Some of our older adults who are getting Alzheimer’s are married or have a long-term partner. Some may be cared for by friends because they’ve been estranged from their families. And so, one issue is that caregiving structures are going to be more complicated and maybe even differ from what we traditionally think of as the typical nuclear family where many people are cared for by either their spouse or their adult children. So that’s one thing that tends to be different or complicated.

I think another issue that’s really important is that older adults now have come through a lot of changes in the LGBT experience, but many, many patients and their family members who are LGBT have experienced prejudice within the healthcare system. And in many cases, patients have chosen to hide their sexual orientation or their transgender status, and coming back into the healthcare system becomes an extremely difficult experience. This is true just when you go to clinic, it is true in the hospital. It may be especially true in long-term care settings such as skilled nursing facilities and nursing homes. So, you can imagine when someone moves into a long-term care facility, they are so vulnerable. And also, that is where they are living all the intimate parts of their lives. So whether it’s from having framed photographs of a partner or lover, from having books on their shelf that might identify, an interest in LGBT materials. For transgender folks it’s the way they dress and, you know, get ready to meet the day. All of those things are now open and exposed to the staff members in those facilities and even may require the help of the people in the facility just to maintain identity, and get dressed in the morning.

And I’m afraid to say that there is evidence, there’s evidence of horrible experiences that LGBT people have faced in nursing homes of being separated from their partners or chosen family, of having their identities ignored or ridiculed. And so it’s just a very difficult thing to think about, the vulnerability that someone with cognitive impairment faces when they encounter the healthcare system.

 

Phil:

When you and I’ve talked about this before, you said that this is like the first big generation of out elders that we have. Are you excited about the opportunities to change the healthcare system with this?

Lexy Torke:

 

Yes. I mean, this is really the generation that grew up and experienced Stonewall and the civil rights movements, including the gay rights movement in predominantly the ’80s and that has affected people all across the LGBT spectrum. I think the HIV and AIDS activism that went on in the ’80s, ’90s and really still continues to this day has really activated the community. And I think it is a tremendous opportunity for us to provide appropriate and thoughtful and sensitive services to LGBT older adults. So yes, I do think that things are moving in the right direction and it’s exciting. It’s an exciting opportunity. 

Phil:

With LGBT elders, how, how did the AIDS crisis and the HIV crisis, how did those change their relationship with the healthcare system do you think?

Lexy Torke:

I think that the AIDS crisis activated people, particularly the gay men community, but I think across the community to be advocates for themselves and their family members.  I think there was a widespread sense early on in the identification of AIDS that there, that there wasn’t enough attention being paid to treatment and cure. And I think that activated the community to go out and demand that more research be done to advocate for policy changes and funding.  and so, I think it created a culture of advocacy that has benefited the LGBT community in many, many ways, including in the whole arena of health care. 

Phil:

Did it activate them to advocate for themselves within healthcare systems too?

Lexy Torke:

Absolutely.  I think it affects the ability to just reach your partner when they’re in the hospital.  it affects decision making. So, for example, when a person loses capacity, if they have not designated someone to be their healthcare decision maker, that falls to an order that usually in most states prioritizes blood relatives. And so sometimes, chosen family or as partners were excluded from the bedside. And so, it really did activate the community to empower people to make those choices for themselves and for family members to advocate for their partners.

Phil:

It seems like the Durable Power of Attorney and the healthcare representative are a really powerful tool for LGBT elders to make sure that those relationships stay respected. Like, how are the, would, Is that correct? Is that a correct assumption? Like, what are some other tools that LGBT elders have to, and their loved ones have to advocate for themselves and their loved ones within the healthcare setting?

Lexy Torke:     

I, yes, I think that the power to designate someone to be a decision maker is really important.  it is especially important in the LGBT community. So yes, that is a document that I really encourage everyone to have, but particularly if the person you would like to make decisions for you is not at the top of your hierarchy in your state.  So I think that’s very important. There are other more general resources out there. For example, there is a national organization called SAGE, based in New York, that provides resources for older adults in healthcare and many other domains as well, but particularly in healthcare. 

Also, the Human Rights Campaign, a national advocacy organization conducts the Healthcare Equality Index every year and rates hospitals and health systems across the country in the extent to which they are LGBT friendly. And so, people who are looking for a healthcare system can search that index and identify resources in their own community. 

Phil:

Alzheimer’s affects patients’ lives in staggering ways across all populations, and it hits socially marginalized communities particularly hard. 

While patients’ memories can fade, their personhood remains, and either intentionally or unintentionally, we, as researchers, healthcare providers, friends and neighbors, can at times be guilty of stigmatizing and making life more difficult for older adults with Alzheimer’s.

In a bonus episode, out now, we look at a choir, the SongShape Chorus, that features the voices of older adults with Alzheimer’s, singing alongside their caregivers and telling the stories of their journeys through Alzheimer’s. We even feature some of their performances.

 

 Join us in our next episode, when we discuss the ins and outs of diagnosis and screening for Alzheimer’s disease and dementia – and what doctors and care teams can do to make the moment of diagnosis go as well as possible. 

We’ll see you then, on The Problem. 

Music this episode was by AA Alto, Broke for Free, Chuhauzen, Everlone, Jahzarr, and Podington Bear.

Our theme and addition musical cues were written and performed, as always, by Cats Against Conflict.

 

Feature Story: Mindi

Transcript

Phil Lofton

Hey everyone!

 

We’ve opened every main episode this season so far with the voice of Mindi Winnie, a young woman who works with Dementia Friends Indiana and CICOA Aging & In Home Solutions.

 

Today we’re going to hear a bit more than usual about her story, as well as her experiences providing resources to other caregivers through her work.

 

I want to let you all know up front that this episode will have some frank conversations on suicide and thoughts of self harm, so take care of yourselves.

 

Welcome to The Problem. I’m your host, Phil Lofton.

 

[Theme]

 

Mindi is the Community Programs Coordinator for CICOA – central Indiana’s area agency on aging.

 

In her work, she helps connect patients and caregivers to resources that can improve their lives, and she also helps promote a better understanding of Alzheimer’s and dementia, especially through the Dementia Friends program, which we discussed in episode 2.

 

This work comes from a personal place for Mindi. When she was younger, her Grandmother, with whom she had lived for several years while growing up, was diagnosed with Alzheimer’s.

 

Phil Lofton

What sort of circumstances led to you as a family finding out that your grandma had Alzheimer’s and dementia? And then what were the conversations like in your house and between you and your family members when that diagnosis happened?

 

Mindi Winnie

This might have been when I was in a either, no, probably either eighth or ninth grade. And, Christmas I mean, another, another memory in that house. I mean, every holiday was spent there. My grandmother used to cater weddings and events and all that stuff. I mean, she was just the homemaker through and through. And  so she loved holidays. because Christmas was such a big deal and so meaningful to her, there was this one particular year that, you know, she had told my grandpa and my mom that she wasn’t decorating, you know. We could still have Christmas over there, but she didn’t want to decorate. She was just clearly out of the Christmas spirit,  but in a really just strain, like it was just, “Where’s this coming from?” You know?

And she tried giving away all of her decorations and some other,  important material value,  items. But yeah, she just, she tried to give all of that away to my mom.  and also just, you know, it was like she always made the same sugar cookies that she had made all of her life and just these same treats and, you know, just the simple, “All right, we’ve got all the ingredients out and we’re getting ready to make all this stuff,” but she’s staring at it and has no idea what to do with these ingredient. Like, “What is this for?”  and again, for somebody, yeah, she always made these treats. But for somebody who used to cater weddings, I mean, she catered my mom’s entire wedding, didn’t really even get to enjoy my mom’s wedding because she was doing all the hard work.  

 

So again, that, that one Christmas was just so significant because it was really the first time we were like, I mean, just starting to see this depression set in

know for a fact that I was a freshman in high school at this point in time. And the next day was like my first winter Fest dance. I was so excited. I was going with my new boyfriend. I had this beautiful dress that I had picked out.  but the day before, so I, I remember I just wake up,  jump in the shower and I heard the phone ring and it was weird cause it was like six o’clock in the morning. So who’s calling the house at 6:00 AM? And then I just remember my mom like busting through the bathroom door and she’s like, “Grandma’s missing.” And I’m like, “What?”

I already have anxiety and I didn’t know it back then, but now I’m like, “Oh my god.”

 

So my heart’s just beating. So my grandma ended up, cause my grandfather worked third shift at a factory right down the road.  but he had worked in this factory for years and,  so she had left a suicide note basically.  and I can’t really remember all the exact details, but we spent, I mean, I can’t even remember, it was hours. I mean, we drove to my great-grandma’s house that was in Jackson, Michigan. And we’re from Marshall, Michigan, so probably 20, 30 minutes away. Drove over there. I mean, we just checked every place where it’s like, “Where could she possibly be?” Just trying to check off places.

 

And then we ended up getting a call from the police department and they had found her at a truck stop right off of the highway. And she had a step ladder in her back seat. And I mean she admitted that she fully intended to jump off the overpass and take her own life. And you know, I mean those two memories… I mean there was a lot of just confusion and, and just a lot of other things that, you know, again, you kinda just glaze over it, like, “That’s weird but…” But then you’ve got these two circumstances where it’s like, “Okay, this is so unlike her. Something is going on.”

 

Phil Lofton

After Mindi’s Grandma got her diagnosis, her family settled into a new normal, with new routines and new behaviors. Eventually her Grandpa needed to go back to work, and Mindi stepped in to help provide care for her Grandma, joining a growing population of millennial caregivers.

Mindi Winnie
She really started to decline once I went to college, my freshman year. So after my freshman year, going into my sophomore year of college, I played soccer. And so I came home that summer, I was working and my grandpa had just retired the year before and it didn’t take him long to get back a part time job, but now I look back and I’m like, ah, that was respite for him.

That was a break for him. So my grandfather asked me at the beginning of my summer break if I could just help watch grandma. And my grandmother was a babysitter, like for probably 20 plus years, ran a daycare out of her home right next to the elementary school.  and so I thought it was just kind of ironic like, Oh, I’m being asked to babysit her, but I said, sure, it can’t be that hard. I mean, I spent most of my days there anyways because they always had the pantry stocked full of food and the fridge was stocked full of food. So I was like, Oh, sign me up. Comfy couch. Yeah, I can hang out all day. But I quickly learned, you know, I truly think it was one of the first times I went over there to start this little gig of mine. And as soon as I turned the door knob, walked through the house, I just got hit with this smell.

And I was like, Grandpa didn’t warn me about this. So of course, I run back to the bedroom and recognize that we’ve got a mess on our hands and could not allow her to just lie in that. So, I get her up, get her showered, get her dry, dressed, fed, settled out in the back room. And then I’m like, okay, now I’ve got to go clean this mess up. I got all that into the laundry and I mean, I could probably count on one hand the amount of days I didn’t have to do that. So that became my new norm for a five-month summer break for me.  and so, you know, I mean, I would’ve never thought of myself as a caregiver. I was just doing what I needed to do, so my grandpa didn’t have to do this when he got home.

But now that I’ve worked for CICOA and I understand the level of care I was providing for her,  and knowing that, I mean one in six millennials are caring for a loved one with some form of dementia at this point in time. I was one of those and so to think, Oh my gosh, many of my peers are in this role right now.  I don’t know. It’s just really, I don’t know to be, you know, I’ve just got such a passion to get out there and to educate our younger generation about this because they’re seeing it. I guarantee you there, because that was me.

I knew she had Alzheimer’s, but I did not understand what in the world Alzheimer’s was. You know, it’s like, yes, I just thought of it as this health condition, but I did not understand at by any means. So I think for me that summer was like finally just understanding yes, what I’m going through, but what my grandfather lives with day in and day out. And now, you know, I wish I appreciated my mom a little bit more. We’re so much alike, you know, so I think moving down here, it’s been the best thing for our relationship cause we’ve been given space.  But we’re so very much alike. But you know, just also understanding, okay, my mom is working full time and then, you know, I mean before she even goes home at night, she was stopping into my grandparent’s making them dinner.

Like we would have to come into my grandparents house and eat dinner nearly every single day if we wanted to eat because why would she go there and make dinner and then come home and make dinner.  but just this appreciation I guess for what they’re going through. But I think for me it was the first time that I understood like she’s really regressed to a point where she can not bathe herself, cannot dress herself. She has to be told to get up, you know, and out of bed and help physically help her out of bed and, you know, actually dress her and put her pants on. And you know, it’s, it was just, I couldn’t, I can’t even put it into words. It was so heartbreaking and so frustrating and I would feel so guilty, but every time I’d show up to the house and you know, it’s like I just, I’m like, okay, take a deep breath before I go in and turn the door knob.

And it’s like either got, you know, smacked with that smell of “all right, she’s made a mess in bed and I need to go clean up”. And every morning that happened I would just get so freaking frustrated, you know, cause I’m like, “Oh my God, here we go”. I mean, just again, just big this kid. But I mean, I, I don’t think I ever really changed my sister’s diapers as a kid, you know? So it was like all of that, that stuff. I mean, you are doing every activity of daily living, you know, now I can say those words. I didn’t realize it back then, but just everything we do in order to get ourselves up and out of the house and onto our jobs or just, you know, I mean, I can’t, I can’t imagine. So for me, I was just, so, I would just sum that whole summer up of just exhausted and frustrated and just like, why did I say yes to helping?

You know? I mean, it’s terrible to say, but I’m just like, nobody told me this is what I’m getting. I was getting myself into like, yeah, I knew she’d have incontinence and have her messes and require this care. But I guess I just didn’t understand it until I was the only, like I didn’t have an option. I was the only person in the house and there was no way I was going to leave that from my grandpa.

So I wish, I wish we would have done more. I wish I would have, you know, just thrown her in the wheelchair and I mean we, she lived, they lived right next to the elementary school that I went to and my sister went to and all the kids that she babysat went to this school and you know, I wish we would have just walked around the school. I mean, just got outside and then got some fresh air. I mean, that is the thing that I think bothers me the most when I think back to all of this is just, again, we didn’t know any better, but we just never stimulated her ever. I mean, we’ve pretty much kind of kept her as a prisoner in her own home and that wasn’t the intention. But again, feeling like “We can’t take her anywhere so we have no other option but to leave her at home.” I mean, I wish, I don’t believe that there were any adult day services.  but now again, working at CICOA and having these relationships with all the different,  adult day service providers around town, I’m like, “Oh my gosh, she would have thrived in an environment like that.” You know, just some place where they’re doing crafts and they’re doing, cause I mean, that was her. She did cross-stitching forever and stained glass. And I mean, she was such a creative person. She would’ve loved that. But again, you know, you, you’re, you’re more focused on all the abilities that they’ve lost and you’re not focusing on what they’re still able to do. So I, I wish we would’ve done more, you know, even if it was just go outside and sit in the back. But I think I was just scared. I was scared to take her anywhere. 

Phil Lofton

Since her Grandma’s passing, Mindi has helped Caregivers across the central Indiana region though her work. In addition to her current community-focused role, in her career, she’s worked as a one-on-one caregiver supporter through CICOA’s CareAware program, giving a hand to caregivers in times of crisis.

 

Do you feel comfortable sharing like when is, do you have any examples of like a time where you really feel like you’ve made a difference in a caregiver’s life?

 

Mindi Winnie

Oh my gosh.

 

I’ve had two caregivers that were,  contemplating taking their own life.  and so, you know, I, I just, me being me, I, I did not know, you know, I’m not, we’re not really trained for that.  and so I just simply went out there and this woman, as soon as I opened the door, I mean, just bawling her eyes out, you know, and really, I’m just sitting there just holding her hands, just letting her vent everything, everything for probably four hours, you know. And by the end of that, I mean, she just, she said, “There’s, there’s nobody that’s ever just taken the time to listen to me and let me cry and let me cuss. And let me be angry and let me just…” And there’s been at least three of those moments that I can think of. And it was just that, it was simply just being an ear, just somebody to listen and to not judge them for all the mixed emotions that they’re feeling, to cry with them, to hug them, you know, to just be a person, in a professional manner, you know, as much as you can. But I think that’s just, for me, that was the best experience that I’ve had. It was a struggle for me.  because, you know, I’m young and don’t have a whole lot of life experience. I mean, I’ve, I’ve been a caregiver for my grandmother and watched my grandfather and my mother go through that.  but you know, being that person that they’re confiding in, you know, I had a lot of,  self doubt that I was the right person to do that job for them. 

But you know, you walk in and it’s almost like the, they’re lifeless. Like they just looked. There’s one woman in particular that just looked almost like a skeleton, you know, I mean just ghostly, just pale and just like the life had been sucked out of her. And by the end of the couple hours that I spent with her and the first half was just talking about what’s going on. And then we shifted gears and we connected over being originally from Michigan, you know, so we found that commonality.  but by the end of that, it was just like, I did not even recognize who I was sitting across from. She got the glow back in her skin, a smile. Her daughter came out and had a cut. Yeah, I mean it was just like her daughter typically hides in the bedroom and really doesn’t have anything to do with anybody who comes over. And she came out and she joined the conversation.

For me now I can look back. It’s been about a year and a half since I’ve been in that role and I can look back and, and think, “Wow, okay. I actually did make a difference at the time.” I’m like, “Okay, what tools am I really giving?” But I can, I just truly think that people, they just need to have that one person that they can be vulnerable with and not feel judged by. And I think for me, that’s just, again, there’s just so many stories that I can think of, but I, I had the unique opportunity of actually being able to go and, and be in the home with caregivers. A lot of that time is spent over the phone, but you know, there’s those few times you actually get to go in and be in the home or in a public space with them and I don’t know, I’m a, I’m a real emotional, vulnerable kind of person myself. So,  to just know that people trusted me with the most vulnerable point of their life is like…

 

Phil Lofton

 

It’s really honoring.

Mindi Winnie

Join us next week as we examine the patient perspective on Alzheimer’s disease and dementia.

Music this episode was from Blue Dot Sessions, Broke for Free, Podington Bear, and Sergey_Cheremisino

Season 2, Episode 4: Alzheimer’s and Caregivers – Decisions, Decisions, Decisions

Transcript

Phil Lofton

So what was that summer like before you quit soccer when you were really taking care of your grandma? Like, what was it like as a, as a college aged kid stepping into that for the first time?

Mindi Winnie

I mean, you know, I guess I knew, I knew she had Alzheimer’s, but I did not understand what in the world Alzheimer’s was. You know, it’s like, yes, I just thought of it as this health condition, but I did not understand it by any means. So, I think for me that summer was like finally just understanding yes, what I’m going through, but what my grandfather lives with day in and day out. And now, you know, I, wish I appreciated my mom a little bit more. We’re so much alike, you know, so I think moving down here has been the best thing for our relationship cause we’ve been given space. Um, but we were so very much alike. 

But you know, just also understanding like, okay, my mom is working full time and then, you know, I mean before she even goes home at night, she’s stopping into my grandparents’, making them dinner. Like we would have to come into my grandparents’ house and eat dinner nearly every single day if we wanted to eat, cause why would she go there, make dinner, and then come home and make dinner? But just this appreciation I guess for what they’re going through. But I think for me it was the first time that I understood like, “She’s really regressed to a point where she cannot bathe herself, cannot dress herself. She has to be told to get up, you know, and out of bed and help physically help her out of bed and, you know, actually dress her and put her pants on.” And you know, it’s, it, it was just, I couldn’t, I can’t even put it into words. It was so heartbreaking.

Phil Lofton

Imagine a group of 16 million people.

That’s a number on a scale that might be almost mind-boggling, so let’s put it in a bit of a better perspective. 

 

A state with 16 million people would be the 5th largest state in the United States. If this group created its own country, its population would be larger than 161 nations. 

 

Hands Across America, the event that attempted to create a chain of people holding hands across the United States, only took 6.5 million people.

If these 16 million people held hands, they would be able to stretch easily from Seoul to Moscow, with people to spare.

These 16 million people are the unpaid caregivers of individuals with Alzheimer’s disease and dementia, according to the Alzheimer’s Association, and as we’ve already discussed this season, that number is growing larger and larger every day.

These caregivers aren’t a homogenous group, either. Two-thirds are under the age of 65, and a quarter of them also provide care for their own children, placing them in the population group known as the sandwich generation – meaning they care for, and often bear the financial and emotional burdens, of both the generation above and below them.

Their lives are, to put it simply, much harder than non-caregivers, and the strain of that hardship puts them at higher risk for suicide, depression, chronic illness and death.

They miss work, are skipped over for promotions, and often have to reduce their hours or leave the workforce altogether, in order to take care of their loved one. 

 

Today, we’ll talk about some of the struggles that caregivers face, focusing quite a bit on the unique challenges they encounter when it comes to decisions they have to make for their loved one.

Welcome to the Problem, I’m your host Phil Lofton.

[THEME]

 Meet Dr. Nicole Fowler, a Regenstrief scientist, and an expert in caregiver decision making. 

Nicole Fowler

So I think I would probably define my work as recognizing that as we age, there’s multiple people who

help us through that journey. And sometimes they’re paid professionals, like social workers and doctors and nurses or care coordinators, but a lot of times they’re our spouses and our children and our neighbors and our friends. And I think first and foremost what I do is I try to think about who is part of the network of an older adult who can help them age well and also experience that journey in a positive way with them. 

So I think that’s at a very high level how I would define some of the, the science that I do. In particular, I focus a lot on how we can support family members of older adults in their role as helping that person age we. And in particular when caregivers start to lose some of their cognitive abilities where they’re able to think through some things distinctly on their own how can we help support family members in their role as helping that other person think through things like medical decisions or where they might live the rest of their lives or how they might get the care that they need.

Phil Lofton      

So why have you kind of pursued that as your career?

Nicole Fowler

I think mainly because I had an experience growing up where I actually just sort of assumed that as people age they had a huge network of people around them who loved and cared about them and who would work together as a unit to make sure that people got what they needed when they needed it. And when I learned that that wasn’t the experience that everybody had, I felt like it was something that I wanted to understand a little bit more about, about building systems that would try to ensure that. Because obviously it’s not possible for everybody to live next door to mom and grandma. It’s not the way that we, we live anymore, but could we help change the way that we age in communities and provide care to folks and not just medical care, but social support in a way that would mirror some of those kind of old familial networks?

Nicole’s work has, in the past several years, moved forward the conversation on decision support for caregivers of older adults.

In particular, she’s worked quite a bit on ways to better help caregivers through one of the most stressful parts of their role in their loved one’s life – helping make medical decisions.

Nicole Fowler

Yeah, I think you know, we’ve been studying the trajectory of Alzheimer’s disease and related dementias for long enough now to appreciate the fact that people live with this disease for years before they die. I think right now the average life expectancy for somebody with Alzheimer’s disease and dementia is about eight to 11 years from the time of diagnosis. But that can be incredibly variable. Some people can live 20 years with a diagnosis; some just a few. But nevertheless, kind of along that journey you know, from, from diagnosis until death, there is a variety of different touchpoints and decision points that happen.

And we know from our work with caregivers that being the primary decision maker, or at least being even involved in the decision making for somebody else about these important life decisions, like, “Where do I live?” You know, “Do I stay at home? Do I move into a nursing home?” You know, “Do I treat that condition that has newly come up? How do I continue to treat the things I’ve always had. Does that change?” We know that caregivers struggle with that. I mean I think our work and a work of others have documented that the role of being a decision maker for somebody else is hard.

And so I think what we’ve tried to do is design a series of interventions that help support and empower the caregiver to think about how making medical decisions on somebody else’s behalf, um can be tailored based on what they think is important for that person’s values and goals of care. And one of the areas that we’ve focused on has actually been around cancer screening. Because as I mentioned, folks with Alzheimer’s and dementia can live years with that disease and thinking about cancer screening–which is a really important preventive procedure for throughout people’s lifespan. And we’re oftentimes told “get your mammograms”, “get your colonoscopies.”

But then there’s also a certain point in an inflection point where maybe the risks and harms of those treatments actually become more palpable than the actual benefits. And so we’re trying to think how best to support caregivers. So we’ve developed evidence-based decision aids in particular. One is around mammography screening that is aimed at caregivers of older women with dementia to not only help them reflect on what would be important values for their loved one and goals of care, but also to give them some real information about what the benefits and risks are for a mammogram for an older woman with dementia.

Phil Lofton      

And I think there’s a good public consciousness on what the benefits of a mammogram are, but for a person with Alzheimer’s Disease or dementia or cognitive impairment, what are the risks? Why  is this something that’s worth pursuing? Shouldn’t everyone just get a mammogram?

 

Nicole Fowler 

Mm-Hm. So I think we’ve learned over the years not just for women with Alzheimer’s, but older women in general who may have a competing health condition that they may not actually have a life expectancy long enough to be able to achieve a benefit from a mammogram. Or they may not be strong enough or physically well enough to be able to treat the cancer even if it were found. They may not be wanting to. So oftentimes what we do, um, in our decision aids that helps support caregivers is to, um, certainly reflect on the emotional aspects about how it’s really hard to make decisions for somebody else. And doing more doesn’t always mean that that’s the best route. And so we kind of acknowledge that and honor that. But then we also talk about the fact that a mammogram is potentially a first step in a series of events. And so we help them think through what those series would be. So for example you know, if she gets a mammogram and they find that it’s abnormal, you may be asked to bring her back to have a biopsy. Is that something you’d be willing to do? If the biopsy shows that she has, uh, cancer, do you feel compelled to then make a decision about, you know, surgical or chemotherapy? And do think that she’d be able to withstand that treatment? So we oftentimes will give them the sort of full scope of information about what each decision might mean in the context of what they think their loved one would want or be able to do.

 

Phil Lofton

But it’s important to say that while some of the difficult decisions that caregivers have to make can’t really be anticipated ahead of time, some can!

 

Planning ahead, having conversations between patients and caregivers is such an important process for caregivers of older adults with Alzheimer’s disease and dementia – and not just about the most dire medical treatments and procedures.

Dr. Lexy Torke is an expert in doctor-patient communication, as well as healthcare and spirituality. She’s a Regenstrief scientist, as well as the Director for the Evans Center for Healthcare in Spirituality at IU health.

 

Lexy Torke      

When a patient is early in the course of Alzheimer’s Disease, it is important to ask them about their goals and values, and do what we call advanced care planning, which is thinking about the kind of treatment that they’re going to want in the future. And we often think of advanced care planning as being primarily about the kind of care you would want later on when you’re unable to decide. So whether a person might want to be in the ICU, would accept something like a ventilator or might at some at some point want hospice. And that’s very important. There is actually a growing awareness that there are other things that should be talked about as well, such as where the person would prefer to live, if they can choose, what’s going to be most important to them in their day-to-day life. And even things like planning for finances or planning when they’re going to stop driving. So it’s really good to have all of those conversations early. And as time goes on, then we, what we try to do is listen to the patient’s voice whenever possible. So even later in dementia, even though the patient may not be able to understand certain highly complex things like finances, their preferences still do matter. And we try to honor their preferences whenever it’s possible and whenever it doesn’t get in the way of their own best interests. And this can be really hard. So for example, someone with moderate dementia might still want to drive their car even though at an earlier time they would’ve understood that someone whose dementia is that bad probably shouldn’t be driving. And so there are times when the caregivers and physicians have to step in. And that’s a really hard process and I think that the distress that can cause patients can be mitigated or reduced by having the conversations early. But it’s true that at the end stages of dementia, the patient is no longer able to express preferences and sometimes even to speak. And then their quality of life and comfort become the most important thing. And people can still indicate if there’s something they want we try our best to use strategies to identify if the person with dementia is in pain or might be hungry, um or might have another need. So it’s still so important to continue to consider that person’s wellbeing and the kinds of things they want. But of course, high-level decisions about medical care then are made entirely with the patient’s family member or other caregiver. 

 

There are quite a few different framing structures, paradigms, or forms out there to help give patients and caregivers some shape to these conversations.

There’s the POLST form, that helps inform health systems of end-of-life preferences related to things like feeding tubes, resuscitation, and more.

There’s the Respecting Choices model, used by Dr. Torke in an ongoing study, that helps care providers lead conversations with patients and caregivers to clarify wishes and preferences, or Five Wishes, a model that helps guide families and individuals through the process of thinking about their preferences for end of life care.

All of these models and more provide opportunities to help shape discussions on care preferences.

Even if discussions go well, though, and care goals are expressed and communicated, patients in difficult medical situations will still oftentimes suffer tremendous pain, even while predetermined care plans are carried out.

 

There’s a whole discipline of care that tries to decrease pain and suffering, called palliative care. Palliative care teams focus both on respecting care preferences, and reducing suffering of the patient.

 

Here’s Dr. Greg Sachs, Regenstrief Scientist and Division Chief at the Indiana University School of Medicine, on palliative care, a subject he’s dedicated decades to researching.

 

Greg Sachs

 

So palliative care is something that most people in the United States actually don’t know what it is. But when you explain it to them, they would like it for themselves or their family. When the needs arise and basically, it’s care that’s focused on providing an extra level or layer of support to people with serious illness. And so that’s especially focused on symptom management planning for the future and decision making and managing transitions of care as people live with serious illness. It’s something that is sometimes confused with hospice care and hospice care is really what’s focused on just the last six months of life. But palliative care one can get from the time of diagnosis throughout the course of a lengthy illness so that people can receive palliative care for many years. And we like to think that it’s something that should be done in concert with even aggressive treatments or curative intent, chemotherapy for cancer, for example, to provide that extra layer of support for symptoms and decision making.

Phil Lofton

Gotcha. So it is a medical practice that keeps you comfortable while the normal care is being provided. Is that correct?

Greg Sachs

 

Yup. I think that would be a good way of putting it. At least that’s one of the more what I would consider the core components of it.

Phil Lofton 

Dr. Sachs is working on a research study right now that will help determine ways to better integrate palliative care into dementia care.

 

Greg Sachs

We are enrolling people who have moderate to severe dementia who are still living at home or in assisted living facilities. So not nursing home residents and we’re enrolling both the patient and their family caregiver. And half the people will get our intervention and the other half will get usual care and we are following them forward over a two year period. And we’re enrolling 200 pairs of people a hundred in each arm. And the intervention essentially as I was mentioning earlier, we’re sort of combining palliative care and dementia care. And so we’re taking the best protocols and symptom management algorithms and education efforts for the family and putting it into modules that we then deliver to the family caregivers to help them manage symptoms at home, help them take care of themselves, help them make decisions when the patient gets hospitalized. We also try to step in and provide support when they’re thinking about things like nursing home placement or referral to hospice will help them with that.

Greg Sachs

And we’re doing this all proactively. So rather than waiting for problems to develop and then people are like going to the emergency room or urgently coming to the doctor. Our nurse or social worker is actually reaching out to them and either contacting them by phone or seeing them in the home and trying to assess what’s happening and see if there are any unmet needs or problems that are already growing.

The struggles of Caregivers are something we, as a society, will have to become better at addressing. You can also listen to a longer form story from our season-long caregiver storyteller, Mindi Winnie, out now as well. In it, Mindi talks about her experiences providing care for her grandmother, how it affected her family, and her current work equipping caregivers with the resources they need.

This group of 16 million Americans isn’t going anywhere, if anything, it’ll just get larger, and if the trends don’t change, their lives aren’t getting easier. The $234 billion dollars a year in unpaid care they provide won’t decrease. The $11.8 billion a year in costs they incur for health problems related to their caregiving will only go up. The 17% of female caregivers who believe they have been penalized at work because of the weight of caregiving in their life will only become a larger and larger number unless we make a change.

Just like how we learned in our episode on collaborative care that a caregiver shouldn’t have to carry the burden of their loved one’s care treatment plan, caregivers need more support in every arena where they’re supporting their loved one. We have to step up now to help create a better system for them.

Next week, we’ll explore the patient perspective on Alzheimer’s, and zero in on how to improve life at the individual level.

Join us then, on The Problem.

 

Music for this episode was from AA Alto, Blue Note Sessions, and Everlone. Our theme, and additional musical cues were written and performed, as always, by Beta Carradine.

The Problem is produced at studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org theproblem.

The Problem is written, hosted, edited and produced by me, Phil Lofton, with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and social media marketing is by Jen Walker.

 

Bonus Episode: Healthy Aging Brain Care

Transcript

The Problem – Bonus: HABC

 

Phil Lofton

Hey! Welcome to another bonus episode of The Problem. These bonus episodes are an opportunity to drill down into individual case studies on organizations and people who are making a difference in Alzheimer’s.

 

This episode is going to be focused on the Healthy Aging Brain Clinic, a collaborative care clinic that we discussed a little during our main episode. If you haven’t already listened to that episode, check it out first, to get a good primer on what collaborative care is, as well as what its benefits are for patients and caregivers, and health systems alike.

 

Welcome to a bonus episode of The Problem. I’m your host, Phil Lofton.

 

[THEME]

 

Eskenazi Health is the safety net health system in Central Indiana. Formerly known as Wishard Health amongst a few other names, it’s Indiana’s oldest healthcare system.

 

In the last few years, Eskenazi has launched the Sandra Eskenazi Center for Brain Care Innovation, a center dedicated to increasing brain health in its patient population, and as a part of that effort, their Healthy Aging Brain Clinic, also known as the HABC.

 

The HABC is a collaborative care clinic that specializes in geriatrics care, specifically Alzheimer’s disease and dementia. It uses a large, multidisciplinary team to help ensure patient and caregiver health is maintained.

 

The work of the HABC is done by pharmacists, engineers, business experts, and professionals from a wide variety of other disciplines.

 

It’s a hub for research becoming practice, and it’s powered by the work of a first-rate team and some state of the art data science.

 

I talked with Malaz Boustani, founding director of the Sandra Eskenazi Center for Brain Care Innovation, and head of the HABC, about some aspects of the HABC that seem nearly ripped from a sci-fi novel.

 

Phil Lofton

One of the things that blew my mind the first time I toured the place when you guys first launched was that big room, the mission control. So what is the mission control do for this model of care?

 

Malaz Boustani

What we decided to do is we wanted to be responsible for the health of a segment of our population. And therefore we said, “We’re not just going to be responsible for people who come over to the clinic only. We are going to be responsible for anybody who suffer from the disease within our community catchment area.”

 

So at Eskenazi, their mission is to help the residents of Marion County. That’s number one, but they are not very selfish. So if we get a family from another county or other state, we will still take care of them. So, we actually created a population. We defined our population, and we measured their need. And then every week, twice, we bring the team together. We go to this mission control room where we look at the health of our entire population and find out which segment of our population we are not meeting their need. Then we zoom in into that need and figure out why we’re not meeting that need. Do we need to modify our care plan? And then we alert our team and then we triage our team and we send them back to the, to the home to revise that care plan and keep doing it in a very non-judgmental way.

 

So we call it the mission control where we can zoom out and zoom in like crazy.

 

Phil Lofton

You talked for a second about using the mission control as a way to see where the population’s health needs aren’t being met, specifically with Alzheimer’s disease and dementia. What are you looking for as metrics for an unmet need?

 

Malaz Boustani:

Absolutely. So, there was no sensor before. So, in the clinical trial we had like six, seven sensors. Each one would take like 25 minutes, I mean, you can spend hours and hours to measure their need. So we realized ,in the process of moving our collaborative care model from the shelf of a JAMIA article that we really need to create a lot of modifications. So we created a very simple,   less than five minute tool that will capture the biopsychosocial. So it captures the behavioral, psychological problems of the patients and their loved one. The functional problem, the cognitive problem and the caregiver stress. And we call it the Healthy Aging Brain Care monitor. And we have it from a self-report version and a caregiver report version. And now that monitor can be completed by the patient or the, if they have certain cognitive ability, by their family member in less than five minute. It can be done, on a paper can be done by telephone, can be done on an app.

 

Phil Lofton

Dan Bateman, the Geriatric Psychiatrist of the HABC, spoke to me a little more about this app, currently being tested in a clinical trial.

 
Dan Bateman
I recently received a grant or career development award to run a clinical trial that studies the use of mobile devices and mobile application for monitoring Behavioral and psychological symptoms of dementia. So in the study is called MOMENT. What we’re doing in the study is we’re working with caregivers and we’re working with patients with dementia and we are providing the caregivers with a smartphone to report through a survey how the patient with dementia is doing in terms of different psychiatric symptoms, which might be hallucinations or depression or anxiety. A myriad of different things. And also we’re looking and interested in seeing what kind of distress those symptoms cause the caregiver. And what we think is that, you know, just measuring things in clinic where it’s not the home environment where it’s not real time is not very helpful.

 

Phil Lofton

Rich Holden, the engineer of the HABC, told me a little more about the app, and how it can impact caregiver life.

 

Rich Holden
Caregivers are told whether the symptoms that they’re reporting are mild, moderate or severe, and they get an overall score. They also get a history of the scores. And there’s some interpretation in providing people with information about the severity of the symptoms. The other side of things is the clinician. And usually that’s, you know, a nurse, social worker or a care coordination assistant working with one of those two. And you know, those individuals need to be alerted whenever there’s been a change in symptoms or symptom severity or when a symptom has become a problem. And I think the real, you know, value of the app is to get the clinician and the caregiver on the same page. So they both know what’s happening with the patient, and that they’re working on solving those problems together.

 

Phil Lofton

This app, though, is an extension of data collection that’s already being conducted at the HABC. Dr. Boustani explained to me, during our conversation, how this data can be used to affect entire populations, and direct care to those who need it most.

 
Phil Lofton
What do you do if you’re noticing a trend on the population level, like within a neighborhood. What are you guys as a unit going to do if, say, the 46222 zip code is looking like the patients in that entire zip code aren’t really having their needs met. How do you guys interface with like community initiatives and stuff then?

 

Malaz Boustani

Well, so you know, we are a little bit lucky that on that type of level. We have our community health workers and our team members who are embedded within the area on aging.   and the area on aging have data to figure out if there is a signal that coming over consistently with, from certain zip code, then we can get sense of why you know, what’s going on there. And   and then we can end up partnering with that community through the area agency on aging. So we call it, this is more of like outside of our scope. But what happened is we said, “All right, we think there is a pattern over there that it’s indicative of more of a community characteristic.” We hand it over to community-based organizations specifically area on aging and the Alzheimer’s Association, and they are the one who kind of have the expertise to figure out is there specific need in that community. For example, that community don’t have access to some support group. They might have no access to clinicians or other things that are unique for that family. But me as a physician and healthcare system, just recognizing my border of control. And just because I’m a good doctor, that doesn’t mean I’m a really good politician or a really good engineer, which is really hard for me to say there because I’m good doctor, you know, I’m supposed to be a really good finance person.

 

So, that’s something for us trying to make sure the area that we have control over, we do it. The area, if we don’t have control over, we find the person or the organization that have control, and then do a handoff. So that’s part of it.

 

Phil Lofton     

So it’s a scale-up of the collaborative model in the first place, right?

 

Malaz Boustani          

Exactly, exactly.

 

Phil Lofton

Like you as a physician can’t do all the social work. So you hand it off to the social worker.

 

Malaz Boustani

Exactly.

 

Phil Lofton

And then you guys as a collaborative team can’t do community-based initiatives to improve things that are outside of your scope of control. So you hand it off to the people that can.

 

Malaz Boustani

Yeah. You know, great example, we found a lot of caregivers in certain area that their source of stress is not their caregiving duty. Their source of stress is that they don’t have a job.

 

Phil Lofton

Yeah.

 

Malaz Boustani

The school of their kids is not safe, that they have issue with food access. And we’re, we’re not good at that. But my area agency on aging in the community are really good. So, they can handle meals on wheels. So, you know, they end up all the sudden meals on wheels, you know, is released on down one. They handled transportation and a application for Medicaid. They know the resources from the state. So, we just do that hand off and knowing that the healthcare system is good in managing the medical determinant of health. But the social determinant of health is by CBO in the area between both, which is the behavioral determinant of health, and this is the area where you need both. Depression is a great example, where you need a formal diagnosis, you need a potentially cognitive behavioral therapy, problem solving, therapy, pharmacotherapy and   social support and social isolation. So these kind of the techniques,  if you think about it as a three-bucket medical determiner of health, we are good at it. Social determiner of health, our partners, community-based organizations are good at it. Behavioral health, both of us are good at it. We integrate. And that’s how we take care of the patients suffering from Alzheimer’s disease, living with Alzheimer disease and their family.

 

 

Phil Lofton

We’ll hear more about the HABC later this season, specifically when we talk about their methods for screening and what a diagnosis meeting with family and loved ones looks like.

 

Join us next time in the main episode, when we do a deep dive into the caregiver perspective on Alzheimer’s, and their specific needs and struggles.

 

We’ll see you then, on The Problem.

 

Music for this episode was from Everlone and Broke for Free. Our theme, and additional musical cues were written and performed, as always, by Leanin’ Larry and the tiltin’ boys.

  

The Problem is produced at studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org theproblem.

 

The Problem is written, hosted, edited and produced by me, Phil Lofton, with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and social media marketing is by Jen Walker.

 

 

Bonus Material

Watch an early video about the Healthy Aging Brain Care Program from the days of Wishard Health

Season 2, Episode 3: Alzheimer’s and Health Systems: Collaborative Care

Transcript

Mindi Winnie

My mom always talks about going to doctor’s appointments and just how frustrated she would be with the doctor.

 

Phil Lofton

What was it that was so frustrating about the doctors?

Mindi Winnie
My mom would get so frustrated because the doctor, he would be talking to my grandmother, you know, and, and when she wouldn’t respond, I mean he was just kind of just, I don’t know if abrasive is the right word, but I mean it was just like my grandma was the only one that could provide any answers. Like, he just didn’t want to listen to my mom and my mom would just be, I mean, there was, I don’t know if she did, but she was like, okay, then we’re just gonna sit here all freaking day then because she can’t communicate, like you’re trying to communicate with a person, they can’t talk. You know?

 

Phil Lofton

The American healthcare system comprises numerous professions. Doctors treat patients, write prescriptions, and manage care. Social workers help patients find resources. Pharmacists help fill their prescriptions. Counselors discuss patients’ lives. Billing staff process payments. And the list goes on.

That team of practitioners, though, can often fall out of communication with each other. Depending on the health system, a given patient’s care might be well-coordinated, or it might fall more on the patient or caregiver themselves to be the source of information related to care – remembering exhaustive lists of medications, testing treatment options, results to report to doctors, and more. It’s stressful for the patient, and the caregiver, and it can actually lead to worse health for both. 

Today, we’ll learn about a specific model of care that can provide better outcomes for patients, caregivers and health systems themselves.

Welcome to The Problem. I’m your host, Phil Lofton. 

[THEME]

Alzheimer’s disease has an enormous footprint in the United States. Remember, there are almost 6 million American adults living with Alzheimer’s today, and there are more than 16 million informal, unpaid caregivers who take care of them.

And while the cost of Alzheimer’s can’t possibly be completely quantified in terms of dollars, our conversation today will be focusing on the impact on health systems, so it’s important to mention another statistic. In 2019, the country is projected to spend $290 billion, that’s with a “B”, on Alzheimer’s.

By 2050, if no cure is found, that cost will rise to one TRILLION dollars a year.

There are a lot of factors that contribute to the massive cost of Alzheimer’s. Older adults with Alzheimer’s have twice as many hospital stays. They’re more prone to emergency department visits. And they have a variety of commonly co-occurring conditions such as kidney disease and diabetes that can also make life more expensive.

There are ways to control these costs. But oftentimes, older adults don’t have a care team working to help manage their holistic care. It’s usually managed by clinicians separately, and it’s up to the patient and their caregiver to create a plan of care for themselves, trying their best to navigate complicated medical systems, manage multiple prescriptions, and remember and reconcile medical advice from multiple practitioners.

And when that much responsibility falls to the patient and their caregiver, it can lead to avoidable doctor visits, adverse effects related to medication, and other maladies that could’ve been avoided if care had been more effectively managed and communicated across disciplines.

In Indianapolis, the Healthy Aging Brain Care at Eskenazi Health, or the HABC clinic, is working to make collaborative care model the standard in senior care.

It’s a model that’s been tested extensively by Regenstrief and Indiana University scientists, and it continues to be fine-tuned. Here’s Dr. Chris Callahan, the former and founding director of the Indiana University Center for Aging Research, with a quick explainer on collaborative care.

 

Chris Callahan
Collaborative care is a team-based approach. And it recognizes that that 10 or 15 minutes that the patient spends in a provider’s office is an incredibly small amount of time compared to the 365 days a year that other people are spending with a person with dementia. And it also recognizes the fact that there are care providers both professional and family who have different skillsets and in many of our models of care.

Now we’re trying to emphasize interprofessional training and that interprofessional training is to teach people this is the skillset of the social worker. This is the skillset of the MD. This is the skillset of the nurse, the pharmacist, the occupational therapist, whoever might be involved. But as you do that, one of the things that happens is you begin to raise questions about accountability. So, can we effectively communicate and hold accountable the person on the team whose role we thought was being filled by this particular person? And it’s no different than any other team. If you picture your baseball, your soccer, your football team, we can’t have the quarterback just decide that he’s going to be a wide receiver and you can’t have the center midfield on your soccer team just decide she’s the goalie. And that takes a lot of communication.


And so this is what I mean by redesigning healthcare. You can get people to agree to this model, but have you put the systems in place that support them in that model? That’s the kind of research that we did, to begin to protocolize, put to protocol which of these members of the team had, which roles, how they should communicate and how they should document what they accomplished. We helped design the electronic medical record that would assist in that asynchronous communication cause they’re often not going to be in the same room at the same time. And where we’re struggling now and we continue to do research is how do you pay for that model of care? What are the payment models and who gets paid what and what’s the right combination? And then, what our team is particularly interested in is how do you take it to scale? So, we have such a clinic at the Sandra Eskenazi Center for Brain Care Innovation, but what would it take for it to be available to everyone?

 

Phil Lofton

Collaborative care, like Dr. Callahan says, is a team-based approach. Commonly, that team consists of a doctor, nurses, social workers, and a care-coordinator, who helps develop care plans and track them to make sure they’re followed and effective. To learn more about the unique parts of the HABC team and what sets it apart, listen to our special case study episode on the HABC, available now.

At a glance, though, the collaborative care is a model that makes sure that care is properly coordinated across disciplines. Especially when dementia is involved, that coordination is crucial to prevent any gaps in care due to gaps in patient memory.

What’s more, in the HABC model, care isn’t just conducted in the clinic, but also by community health workers who visit the patient in their home. This helps the whole collaborative team have a better understanding of the patient’s whole health.

There’s also a strong emphasis on care for the family or loved one functioning as a caregiver, as well. Here’s Regenstrief Scientist and founding Director of the Sandra Eskenazi Center for Brain Care Innovation, Dr. Malaz Boustani, who has helped show the power of collaborative care in his work over the last decade.

 

Malaz Boustani

As a scientist when we did our epidemiological study to understand where the suffering from Alzheimer disease was coming from, what we saw that actually there is a caregiver suffering more than the patient. And actually as a matter of fact, the life expectancy of a family member caring for their loved one with Alzheimer disease is shorter than a family member who taking care of somebody else and for sure much, much shorter than family member who doesn’t have a loved one with a disability. So that’s one.

A second one we found out from our clinical trials, and other people prior to our clinical trial that actually if you help the family, if you provide them with the problem-solving strategy, coaching on problem-solving strategy, if you provide them with community resources, if you provide them with navigation capability and if you provide them with the method and processes to reduce their own stress, that actually improve their overall burden, but more specifically reduces the suffering of their loved one from Alzheimer disease. So, it was a scientifically valid focus on the caregiver.

 

Phil Lofton

In Dr. Boustani’s research and clinical practice, he’s shown Collaborative Care to be incredibly effective at reducing harms of Alzheimer’s to both the patient and the caregiver, as well as creating cost savings for health systems.

 

Malaz Boustani
People think there is nothing you can do for Alzheimer’s disease. That is absolutely incorrect. Absolutely. There’s a lot of things we do with Alzheimer disease more than what we do for diabetes and hypertension. All right? I can literally, with the collaborative care model, reduce, at least take away $3,500 per member per year. You know, I can reduce your inappropriate hospitalization by half. I can almost reduce your caregiver burden by 90% within 12 months. I can reduce the behavior and psychological burden, some by 90% within 12 months. So, there’s a lot of thing we can do. The problem is that is not what the message is received by our family members and patients. They think Alzheimer disease is not curable. Diabetes is not curable. Hypertension is not curable. Coronary heart diseases are not curable. These are all chronic diseases. You can live with them. But they don’t have this negative stigma like Alzheimer disease. So that’s why we need to improve that awareness and, and switch it from negative message to the reality the fact of positive thing. 

The second one is we need to make sure there is an actual policy of alternative payment model that will make it easy for people like us at Eskenazi to do the right thing, not depend on the philanthropist and other things, to deliver what’s supposed to be the right thing to do. And finally, we have to empower the caregiver and the patient and such market demand by creating these health savings account or expanding the scope of health saving account to cover for the caregiver-based intervention and have the caregiver and the patient in charge of using that housing saving account, not a primary care doctor or a physician who doesn’t even have two minutes to build empathy with patients and family. So that’s kind of our current strategy. It’s a tough one. But man, it’s going to be the hill that I’ll die for proudly.

 

Phil Lofton

But so far, collaborative care models haven’t really been widely adopted. When I asked Dr. Boustani about it he told me that it’s largely because most people don’t know about it.

 

Malaz Boustani
So for us right now, the next step is how can we create a market demand for this collaborative care model. And I think policy is a good starting point. But it’s not going to be enough. So, I think, there’s two strategies to create that market demand, increase awareness on a community level, a grassroots level. And we are teaming up with the AARP and Us Against Alzheimer’s disease to actually, destigmatize brain health and make people think that, you know, brain health is everything below the neck. Technically we can do a lot of transplants but we can’t transfer your brain.

So increase awareness. that’s, that’s a huge one. And the second one is creating alternative payment models, through policy that will create a market also demand, on that piece.

We think what we also need besides increasing awareness and creating policy of alternative payment models is actually to empower the caregivers and the patients, to be the one who has the financial power to choose a healthcare delivery system that we’ll be able to provide the collaborative care model. And we think we can do that by expanding the health saving account capability to include into that health saving account to use that health savings account to pay for caregiver coaching and caregiver-based intervention and directly to pay from that health savings when our account to the health care delivery system that will deliver the collaborative care model. So that’s our strategy. In order for us to do it, I have to create a coalition.

 

Phil Lofton

If Medicare and Medicaid change their reimbursement models, collaborative care of a quality like that available in Indianapolis could be available across the nation.

Imagine a team of experts – a pharmacist, a social worker, doctors and more – meeting together with you and your loved one to discuss their care, to assess progress in health goals, and to clarify confusion with you. Right now, that’s not widespread, but if collaborative care is expanded, it could be.

In order for it to happen, Dr. Boustani says we simply need to let patients and caregivers know the benefits and the options in care.

This search for a better care model for some of the most vulnerable patients comes from a deeply personal place for Dr. Boustani. During our talk, he shared his story with me.

 

Malaz Boustani:

As a resident in Mount Sinai in Cleveland, when I was taking care of a patient who was transferred to our hospital from the nursing home. And that person suffered from Alzheimer’s disease and dementia in particular. And we didn’t take care of him at all in the hospital. I saw suffering in his eyes. I saw suffering in his family and I think we made his life worse actually.

He came over to the hospital and, and somehow I imagined myself being in his shoes, and I got really scared. and I felt, “It’s not right. It’s terrifying and, and I need to do it–not just for this person, in particular, but also for me and my family and others.” So, that that was a terrifying experience and I didn’t help him at that time. I didn’t know. Most likely I caused more harm than benefit for him. But, his face, his emotion and laying in the bed surrounded by his family members, got stuck in my head and, think that was the main driver, that led me, you know, focus on making sure that experience won’t be replicated to other people.

 

Phil Lofton      

Can you tell me about like some experiences that you’ve had where you’ve had kind of an inverse of that? How have you used this to fuel better patient interactions? What do some good patient interactions and patient family interactions that you’ve had look like?

 

Malaz Boustani          

You know, almost like–when was it? ’96, ’97, So almost, 10 years later, more maybe 11, 12 years later, I had the opportunity to, help and coordinate the care of another family living with Alzheimer disease. And that family, I was with them almost the entire journey. So, I was there from the time we made the diagnoses of Alzheimer disease and dementia to the time that the patient passed away. And if I can share with you the video clip in my head from the last hours.

So, I was in the patient’s home. the patient was laying down sleep, very peaceful. The wife, was there. The son and the daughter were there. Grandkids were there. And there was music in the background. It was Italian music and people were laughing and the hospice nurse was there. And 24 hours later, I received a call from the wife, the son and the daughter altogether, thanking me that this was a beautiful transition for their loved one.

 

 And what they told me was “Thank you for keeping our loved one at home for longer. Thank you for taking care of our mom. and, and thank you for, helping us, navigate the journey with our dad.” and so that was, that was one of the proudest moments in my career.

 

 And, simultaneously almost another decade passed, and I could not replicate that experience to my father-in-law. And, the only difference between the experience that I was able to provide a great experience, and experience that I could not provide to my father-in-law, that my father-in-law was not living in Indianapolis and was not receiving care at the Sandra Eskenazi Center for Brain Care Innovation. And that was very, very disappointing because that told me that if I can’t crack the scalability and sustainability of providing great Alzheimer disease care, then that’s not fair. And, so since then, I shifted a lot of my efforts in research activity into this concept of developing a scalable, sustainable, evidence-based, effective Alzheimer Disease Care Program that can be provided to everyone, not even in the United State and even across the United States.

 

 

Phil Lofton

Collaborative care isn’t a cure for dementia or Alzheimer’s, but it can ease the burden on patients and families. It can prevent moments of crisis. It can improve quality of care. It can keep caregivers healthier, longer, and it can keep older adults in their homes, longer.

Next time, we’ll dive into the struggles that caregivers face.

Join us then, on The Problem.

 

Music for this episode was from AA Alto, Everlone, Jahzar, and Monplasair. Our theme, and additional musical cues were written and performed, as always, by Fill in the Blank.

The Problem is produced at studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org theproblem.

The Problem is written, hosted, edited and produced by me, Phil Lofton, with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and social media marketing is by Jen Walker.

Special thanks to Mindi Winnie, this season’s caregiver storyteller.

 

 

 

Bonus Materials

Dr. Boustani shares tips for improving caregiver health, a key component of collaborative care.

Bonus Episode: Alzheimer’s Association

Transcript

Hey Everyone!  

Welcome to a supplementary bonus episode of “The Problem.” These episodes let us drill down into specific examples of organizations or groups that are changing how life with Alzheimer’s can be lived.

I’m your host, Phil Lofton.

[Theme]

It’s hard to talk about Alzheimer’s disease and related policy without mentioning the Alzheimer’s Association.

Founded in 1980 by Jerome Sloan and several family support groups, the Alzheimer’s Association has been an invaluable resource for families living with Alzheimer’s.

It’s raised money for research through events like the walk to end Alzheimer’s, supplied resources to countless patients and caregivers, and raised overall awareness of the disease for nearly 40 years.

Nationally, the association now has 78 chapters. It has spun off a political impact arm, the Alzheimer’s Impact Movement, and it has helped raise the annual NIH funding for Alzheimer’s research to nearly $2 billion through successful lobbying.

To learn more about some of the policy advancements that we’ve seen in Indiana for Alzheimer’s, I spoke to Natalie Sutton, the chapter executive of the Indiana Chapter of the Alzheimer’s Association.

Natalie Sutton:
There are 5.8 million Americans living with Alzheimer’s disease now and about 16 million Americans who are providing unpaid care for someone with the disease in Indiana. That translates to about 110,000 Hoosiers who are living with the disease and about 338,000 Hoosier caregivers. So there’s already a big impact on people. Alzheimer’s disease is the most expensive disease in America as well. And that those numbers have the expense, don’t even calculate the value of the unpaid care that people are providing. So, uh, this disease unfortunately can really drain families and those affected.

Phil Lofton:
Why is Alzheimer’s the most expensive disease? What is it about Alzheimer’s disease that makes it so uniquely costly?

Natalie Sutton:
You know, unfortunately, I think a big driver of the cost is in the later stages of the disease and is in long-term care settings. So when we think about how much we spend, unfortunately we’re spending a lot of those funds toward the end of the disease spectrum. And at the Alzheimer’s Association, we think one thing that would be really great is to invest more in Alzheimer’s and dementia as a public health issue and focus more on how we can improve diagnosis and help people to live better in their homes and communities with the disease. We think that that would help to reduce the cost of the disease for sure.

Phil Lofton:
So how are we going to see this trend of Alzheimer’s prevalence, Alzheimer’s incidence, and caregiver population? How are we gonna see the cost increase over the next several decades?

Natalie Sutton:
We’re very ambitious at the Alzheimer’s Association, so we set big goals and we hold ourselves to the highest standards in terms of trying to achieve those goals. We were founded as an organization with really two aims: one, to advance research, to put an end to the disease, but at the same time, recognizing that research takes time and people are hurting now, providing care and support for those living with the disease. So when we boil those really big planks of our mission down to our local community in our local chapter of the association, we have six pillars of our strategic plan. One that we spend a lot of time on every day is care and support for those affected. Our big goal there is really to reach more people. So we reach just under about 6,000 unduplicated constituents in Indiana year, which sounds like a lot at first, but when you realize that 110,000 Hoosiers are living with this disease, we know we’re not doing enough.

Phil Lofton:
Those Hoosiers, though, have unique opportunities, Natalie says, due to local resources and opportunities in research.

Natalie Sutton:
Indiana is a great place to be for Alzheimer’s research right now, and I think there are a lot of exciting things happening at the Indiana University School of Medicine, but also in our life sciences industry in Indiana and in the pharmaceutical industry. So, there is a lot of great research work happening. One of the things we’re most excited about that our chapter has become very involved with is the longitudinal early-onset Alzheimer’s disease study.

So really, you know, a long-term observational study that we’ll look at people who have been diagnosed with Alzheimer’s or dementia prior to the age of 65. And I think it’s really interesting to think about what we can learn from those patients without all of the complications of aging that we see in a more traditional onset of the disease, as well as the fact that families affected by early onset disease are experiencing this challenge at a different time in their lives, when they’re supposed to be still putting their kids through college or working actively.

And so it’s an especially devastating form of the disease and we’ve been very excited at the greater Indiana chapter to get involved with that study and support some of the genetic analysis that was not going to be funded by the NIH.

Phil Lofton:
We’ll learn more later this season about that study.

The Alzheimer’s association has also had political impact over the last several decades. I spoke with Jason Barrett, the policy director of the Greater Indiana chapter, to learn more. 

Jason Barrett:
So part of my role with the association is to work at the federal and the state level to help promote the adoption of policies that are providing caregiver support and increasing the care and support for those living with the disease — increasing research funding. So, just quickly, federally we’ve had a lot of very large successes advocating at the federal level. About a decade ago, we were instrumental in helping to pass the bill that created the first ever national plan to address Alzheimer’s disease. Goal one of that plan was to have a medical intervention in place by the year 2025. And we’ve used that goal as well as a few other things to help us with advocating for additional research funding for Alzheimer’s disease.

We’ve been hugely successful on this front. We’ve been able to quintuple — that’s five times — the amount of NIH funding over the past six years. So about six years ago, we were at $450 million a year. We’re currently at 2.3 billion a year and that number is likely — hopefully, fingers crossed — to increase further with the budget being passed later this year, the fiscal budget. Now we’re working with Congress and we have some pretty good first indicators that that money is going to be increased even more. So federally speaking, we have a lot of successes. And one bill that we passed last year was our priority bill that plays very well into what we’re trying to do at the state level as well.  

That bill, it was called the Building Our Largest Dementia, or BOLD, Infrastructure for Alzheimer’s Act. And it will, or once it’s funded properly, it will create Alzheimer’s centers of excellence across the country where these places can be designated as an Alzheimer’s center of excellence. And they’ll receive funding from CDC to promote awareness of the disease, provide caregiver support, help with that early detection and diagnosis, which is key for caregiver support and making sure that medical plans are in place and also collecting data that can help to promote further policies. So these are some of the things that we’ve been very successful at at the federal level.

Phil Lofton:
If you’re in need in Central Indiana, there are plenty of resources offered by the Alzheimer’s Association, both for patients and caregivers.

Natalie Sutton:
The greater Indiana chapter runs 65 support groups throughout the state. We really want people to know that they’re not alone, right? This is a big issue, but it’s also affecting a lot of families and there’s power in coming together, especially for those caregivers to talk about what they’re experiencing. And to provide that mutual support for each other.

We have a 24/7 helpline at the Alzheimer’s Association, an incredible resource, because it’s available 24/7. The issues and challenges of this disease don’t neatly present themselves during business hours. So giving caregivers, what really some of them have called a lifeline, being able to call, you know, at two in the morning or over the holidays when you’re a caregiver, experiencing a challenge and have that compassionate ear as well as gain information and sometimes some tools or strategies that may help you through a challenging situation. So those are just a couple of examples of the care and support services that we are really happy to provide for Hoosiers.

Phil Lofton:
Join us next week for our regular episode, where we’ll learn about a clinical model that can improve quality of life and health for both caregivers and patients by putting team-based care at the forefront, all while reducing costs for the healthcare system.

Music for this episode was from Everlone and Broke for Free. Our theme, and additional musical cues were written and performed, as always, by Fungus Amongus  

The Problem is produced at studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at regenstrief.org/theproblem.

The Problem is written, hosted, edited and produced by me, Phil Lofton, with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and social media marketing is by Jen Walker.

Bonus Materials

Learn more about the Alzheimer’s Association, as well as the resources they offer caregivers and patients, and discover more facts about Alzheimer’s at https://alz.org/

Learn more about Alzheimer’s advocacy and public policy at https://alzimpact.org/

 

Episode 12: The Opioid Crisis

Take a look back at our first season as we recap what we’ve learned about the opioid crisis. It’s the first season finale of The Problem!

Transcript

Phil Lofton

It starts with a plant.

The opium poppy, which goes by the name of the breadseed poppy more often these days, is a greyish greenish plant, about a yard tall.

This plant has been with us for as long as we’ve been going as a species, and over the millennia, we’ve made the fruit of the poppy stronger and stronger, bringing opiates and opioids into the world.

From heroin to fentanyl, our medicines grew into more powerful weapons in the battle on pain.

Around thirty years ago, that battle became an outright war, as doctors declared pain a fifth vital sign – something to be eliminated and conquered outright in the course of clinical practice.

We’ll never know if that declaration to destroy pain, in a vacuum, would have led to the opioid crisis.

How could we? In a society, nothing – big or small – occurs in a vacuum.

The fifth vital sign movement was joined by a letter to the editors of the New England Journal of Medicine by a physician named Hershel Jick, whose study on the effects of opioids in inpatient settings was misinterpreted and used to justify the proliferation of opioids.

It was joined by the collapse of manufacturing jobs. It was joined by direct marketing, and it was joined by the great recession.

It wasn’t one cause that led to the thousands of deaths we’ve seen in the opioid crisis.

A catastrophic failure of multiple industries and policies piled up within the span of a few decades, and an awful convergence of commerce, culture and prescriptions led to something that would take the efforts of professionals from a wide variety of fields to even begin to untangle.

Welcome to our first season finale.

I’m your host, Phil Lofton.

Over the season, we’ve looked at so many different disciplines and institutions’ perspectives on the opioid crisis – how they talk about it, how they fight it, and how they think about it.

 

We could focus on discussing the diversity of approaches presented by our experts, but I think the previous episodes did a bang-up job of that already.

Instead, I want to focus on the commonalities – those little threads that leap out from individual episodes and show how these disciplines come together to fight the crisis.

This episode, we’ll talk about the history of the crisis, how we’ve learned to improve care, reduce harm, and why fighting the stigma associated with substance use disorder may be one of the most important steps we can take.

One of the biggest things that we’ve learned this season is how the crisis began.

Here’s a clip from our talk with Kurt Kroenke, the legendary symptoms researcher, from back in episode 2.

Kurt Kroenke

I’d say there’s been a couple waves. So when I first started out, pain was always felt to be an indicator of something else. Something specific. As I mentioned earlier, there’s this disease model. We think everything crosses back to a disease, but there’s a lot of pain that’s mainly a symptom somewhere in the body and we are testing doesn’t help us, you know, MRIs, blood tests and so forth. So then a little over 25 years ago, the early two thousands, there was a movement to represent, to recognize pain as an entity onto itself and a more humane approach to pain. So there was a big push to recognize pain, better treat pain, look at pain as any other disease because it causes a lot of suffering. So there was a big push to screen for pain, treat pain. And along with that came the issue of using more opiates.

 Phil Lofton

Andy Chambers, the Addiction Psychiatrist that you heard from in our fifth episode, also had some thoughts about the origins of the crisis – especially how it related to mental and behavioral health.

Andy Chambers

It kind of began with deinstitutionalization in the sixties and seventies closing a state hospitals and um, at the same time you have the war on drugs, which was really of a political and cultural movement in the United States to decide we’re going to address the drug problem through criminalization. So think of those two things happening at the same time, right? The, the, the slow motion, sort of degradation of behavioral health care while criminalizing drug addiction. And no one knew that mental illness and drug addiction are biologically interconnected diseases of the brain.

So what you end up doing now is beginning to criminalize mental illness itself.

Phil Lofton

A lot of our guests have had some ideas about how we can use the lessons from this crisis to provide better care to folks experiencing addiction. Chris Harle, one of our informatics experts from episode 6, talked about changing patients’ electronic medical records to provide the most relevant information to doctors all in one place.

Chris Harle

What are all the things we’ve tried to treat them with, but having to work. What are the things we’ve tried that did work, what are they currently on and what are the risk factors and what are the doses of their medications? Are these moderate risk or high risk doses of opioids that we need to cut back on? We need all of that current and historical information in a single place and organized in a way that’s a cognitively pleasing. The way that they sort of fits with the way their brain works and it’s not how information is typically presented in the EHR. It’s all over the place and it makes it hard

Phil Lofton

During our conversation with Jim McClelland, Indiana’s Drug Czar, he applauded local efforts by Indianapolis’ safety net health system, Eskenazi Health, to integrate mental health with addiction care, to better care for the whole person.

Jim McClelland

The surgeon general issued a report earlier this year that indicated that about 45% of people with a mental illness diagnosis also have a substance use disorder. Although only about 51% are getting treatment for either, and only a small minority are getting treatment for both and they’re connected with each other. Eskenazi has done some really interesting work that was published not too long ago where they, at their federally qualified health centers, they have integrated primary care and behavioral health, including a treatment for addiction and mental illnesses and augmented those services with nonmedical services, that help deal with some of the social and behavioral problems that individuals are facing. And they found that that combination significantly reduced future hospitalizations and visits to emergency departments. So it’s a way to save money and also improve outcomes.

 Phil Lofton

Earlier in our season, we interviewed two people at the forefront of this new care model, Author of the 2 by 4 model, Andy Chambers and Eskenazi Midtown CEO Ashley Overley.

Andy Chambers

There’s no reason we can’t move to this integration within behavioral health where patients with basically any major addiction in any major mental illness can get, can walk into a building and get all that treated in whatever combination that got it without going somewhere else, without needing to do that. And if you do that, the care is going to be better and have more effective, better outcomes.

The addiction psychiatry group is fairly important. Keystone to this. But you know, you want all the professionals on the team in this kind of clinic to be comfortable and competent and in fact expert at both mental illness and addiction. So you have this professional group. It’s a team. What happens is any combination, the patient presents with PTSD and nicotine addiction, alcohol, bipolar disorder, Nicotine, OCD, schizoaffective disorder, any of these combinations, they come in the door and that same team can do it all.

Ashley Overley

There continues to be just a real stigma within the community about not just mental health but particularly addiction in general. And so I think it’s important for people to realize that the treatments that we have to offer both medication and psychotherapy really do go hand in hand in, do help people reach long-term goals of recovery and healthy functioning in society.

There’s no, there’s no need to be afraid of those kind of interventions and there’s no need to marginalize them. We really should be embracing both the medication assisted treatment and even harm reduction strategies like needle exchanges because these are tools that help move people toward a healthier lifestyle and a healthy recovery.

Phil Lofton

Over the season, we had a few guests mention something called harm reduction. What that means is reducing the impact or harms that drug use may inflict on a given person. Needle exchange programs, which are often called syringe services now, are a harm reduction tool because they reduce the likelihood of contracting hepatitis C or HIV from sharing dirty needles.

 

Joan Duwve talked to us about syringe services back in episode 9, and how they can not just reduce harm for patients, but ready them for recovery.

 Joan Duwve

So syringe services programs. Really it’s how we like to describe them because they do so much more than give people needles and I think when we call them needle exchange programs, we really start focusing on the needle and on the one to one, so we do have laws that, that sort of prevent that one to one exchange. But if we focus on the syringe services program, all the services that are provided by these harm reduction programs, I think we start to see the benefits in terms of humanizing individuals, providing them access to care, meeting them where they are, and walking with them through their journey until they’re ready to get into recovery.

Keeping them alive, keeping them well, not only is beneficial to the individual, but it’s beneficial to the society as a whole. And that happens in so many ways, right? So even the simple fact of giving, giving people clean needles, we all understand that that prevents ongoing transmission of HIV and Hepatitis C. It also prevents infectious diseases, abscesses or endocarditis or heart valve infections. And what that does is it keeps levels of those infections, lower in communities. And it’s going to protect other people in the community, but there’s also a huge economic benefit to a community to keep people healthy every time you have somebody with HIV in a community that means that there’s a lifetime of treatment costs that go along with that. And the same thing with Hepatitis C, it’s an expensive disease to treat. Hospitalization for heart valve infections is really costly.

So we provide social benefit to the community. We provide benefit to the individual and we provide this huge economic benefit as well. But certain services programs do much more than that. So we’re already at a, at a positive, um, balanced socially and economically and in certain services programs. Actually the immunized individuals. So for example, we have a hepatitis a outbreak now in Indiana, in that hepatitis a outbreak has particularly impacted individuals who use drugs and individuals who are homeless. In communities with syringe services programs, the majority of individuals who meet those definitions are already immunized against hepatitis A. So in communities surrounding Scott County, for example, that don’t have harm reduction programs, there are hundreds of individuals who’ve been infected with hepatitis a and that can spread really, really quickly throughout a community. In Scott County, there have been five. That’s because the syringe services program meets people where they are, provides them with services in a safe space for those individuals, individuals don’t feel judged, so they’re ready to walk through the door, they’re ready to accept help.

Phil Lofton

To drill down on something that Dr. Duwve said there, we heard over and over again this season that we desperately need to reduce the stigma associated with addiction. Here’s a little more from Jim McClelland on how that can happen.

 

Jim McClelland

FSSSA last year launched what they refer to as a humanizing campaign, which is basically an anti stigma effort, called Know the O facts, to try to educate people that, number one, an opioid use disorder is a chronic disease. It has affected the structure of the brain. It has affected your ability to make what the rest of us would consider a rational decisions. And the longer you’re on it, the more difficult it can become to get off.

But the good news is it is treatable and recovery is possible. So this is the basic message that FSSA launched, last year. there’s a link to it on the next level recovery website, in.gov/recovery. It’s also on FSSA’s website. And we know that several thousands of people have access to that. We know there is some improvement in the way people are viewing this as a chronic disease rather than simply a moral failure.

Phil Lofton

Remember Shane Hardwick, our EMT from episode 7? Here’s how building relationships with his neighborhood has impacted his work.

 

Shane Hardwick

At the end of the day, we’re building a relationship with these folks, and we’re kind of showing them that someone does actually care about their wellbeing.

 

Phil Lofton:

What sort of an impact do you think that makes? Do you think that that’s a thing that people get all the time?

 

Shane Hardwick:

No, I don’t. I don’t think that’s something that people get all the time, and one of the things that I think we’ve become keenly aware of on the job that we have is that loneliness is part of that epidemic. It’s not just the addiction, but you know, what’s the root cause… and to have people that are otherwise strangers that are pouring into these folks’ lives, I think it does have a profound impact. And to know that there’s someone out there that truly cares about you and your wellbeing is, um, that’s a pretty darn empowering thing.

Phil Lofton

Reducing the stigma associated with addiction is built on empathy and trust. That trust can be a powerful tool to help patients avoid potentially addictive drugs. Here’s a segment from our conversation with Marianne Matthias from episode 2. In it, she talks about tapering patients off of opioids onto safer alternatives.

 

Marianne Matthias

if patients could be given some input into even like the rate of tapering, how fast their doses go down, patients and providers felt better about it because it gave them some control and some sense of ownership of their own health in their own treatment. Another thing we learned from that study is that patients really needed to know that they weren’t going to be abandoned by their providers. So they needed to know that their providers weren’t just going to cut their opioids and then leave. And we observed a lot of cases both in the clinic visits and in the interviews of providers, especially reassuring their patients, you know, I’m, I’m not leaving, I’m not going anywhere. It’s not going to happen. I’m going to be here with you through the whole time.

So those types of things we found were just, they helped facilitate, I think, smoother tapering because the patients really felt supported and they felt like they were, you know, in it with their provider and that they were, they were working as a team

But reducing that stigma is so important – remember, Robbie, our guest from episode 8, knew he could recover when he was in a place where he felt safe and respected. I want to close out the season with a reminder of the conversation we had with him. After all, at the heart of all of our efforts, it all comes down to people overcoming addiction and living well again.

 

Robbie

This guy took me out in the hallway. I’m bawling. Crying is, I know what to do, man. I, and he told me, he said, man, just stay here today. Stay here tonight, just cool down. If you want to leave tomorrow, then leave tomorrow, so just don’t leave tonight.

My life ain’t pain anymore. You know, I don’t wake up hating life anymore. I don’t need to escape anything anymore. You know, I want to wake up in the morning, I want to live my life, y’know?

 

Phil Lofton

It starts with a plant, but how does it end?
There’s no silver bullet to the crisis. The misuse of opioids is deeply entrenched in our society, wrapped up in so many distinct factors.

What’s more, while the opioid crisis is, of course, an issue of pharmaceuticals, to call it simply a medical crisis is missing the point. So is, for that matter, calling it a mental health issue, or a policy issue. It’s not just a problem in any of those areas, it’s a problem in all of them.

 

And that’s not a handwave or a dismissal. Because if we acknowledge the complexity of the issue, then something interesting happens. When we acknowledge that the problem isn’t just confined to one discipline, or even one industry, then we have to confront the possibility that it might be a responsibility that all of us share.

 

It starts with a plant, but it ends with research. It ends with conversations about healing. More than anything, it ends with efforts from people across disciplines and industries, fighting together to stop The Problem.

 

That’s it for the first season of The Problem. We really hope you’ve enjoyed it.

 

We’ll be taking a break for a little while to plot out the next season, which will feature an all-new, all-different complex issue centered in healthcare. If you’re not already following Regenstrief on Twitter or Facebook, make sure you do to stay up to date for an announcement coming soon.

 

Music this episode was from Everlone and Broke for Free. Our theme, and additional musical cues were written and performed, as always, by Some Guy.

 

The Problem is produced at studio 132 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org/theproblem

 

The Problem is written, hosted, edited and produced by me, Phil Lofton with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and Social Media Marketing is done by Jen Walker. Special thanks to the Regenstrief Foundation, and Sam and Myrtie Regenstrief for their vision of a better future with better care and better health for all.

Episode 11: The State

Learn what policies are changing the course of the opioid crisis in Indiana, featuring interviews from Jim McClelland and Pam Pontones.

Transcript

(00:00) Phil Lofton:
From the Regenstrief Institute, this is The Problem. The Problem is an anthological podcast dedicated to fighting the hydras of healthcare, those complicated big, hairy issues that impact healthcare on the societal level. Every season you’ll hear about a different big, massive problem and each episode within that season will feature a different discipline or industries take on that problem, how it’s being addressed, how it’s being talked about, and the trials and triumphs of those involved clinically and personally. This season is all about opioids. Over the next few episodes, the problem, we’ll talk about how we local communities, Indiana and the United States got into this crisis, how people suffering from addiction are treated and how the needle can be moved on addiction. This is a podcast for anyone who might be interested in how these problems have developed and are approached. You don’t need a PhD to be affected by them, so you shouldn’t need a PhD to learn more about them. Regenstrief institute is a global leader dedicated to improving health and healthcare through innovations and research and Biomedical Informatics, Health Services, and Aging. Welcome to The Problem.

(01:11) Jim McClelland:
A Friend of mine a few months ago had shoulder surgery and he knows a lot about this issue. So I said, okay, so, um, what did they give you? And he said, well, the surgeon wrote out a prescription for 55 pills. I gave it to my wife, he said, and I told her to have the pharmacist give me 10 pills. And the pharmacist did that. And he said, I took two of them. I didn’t need anymore. So then we have the problem. When you have situations like that, of all these excess pills. The DEA, the Federal Drug Enforcement Agency does have a take back day. So a couple of times a year. And during the most recent, which was a two day event in October, the state police, the pharmacy board through the Indiana professional licensing agency collected over 10 tons of pills. And since January, 2017, those efforts on those drug take back days have produced over 27 tons of pills. I have a hard time even imagining what 10 much less 27 tons of pills look like.

(02:32) Phil Lofton:
The opioid crisis as we’ve seen is something that’s personal. It’s stories of individual struggles and recoveries that play across the landscapes of homes and clinics. It’s systemic too, consisting of systems learning to push back against the waves of overprescription, but it’s also larger than that. It’s an epidemic that affects large swaths of the population across city, county and state lines. To fight the epidemic on this largest scale, the population scale, we depend elected and appointed officials in our governments to build coalitions and develop policies that will lead to prevention of addiction where possible and fast effective recovery for those already addicted to opioids. Today we’re going to be talking to several people leading efforts within Indiana state government. This episode is going to be split at the midpoint, so be sure not to miss the second part. First we’ll feature a conversation between Regenstrief President and CEO, Peter Embí and the executive director for drug prevention treatment and enforcement, Jim McClelland, as well as some excerpts from a conversation between Dr. Embí and Deputy State Health Commissioner Pam Pontones.

(03:35) Phil Lofton:
We’ll also talk to Josie Fasoldt and Darshan Shah from the State’s Management Performance Hub and organization within the state government that aims to connect and empower groups through data accessibility. What’s more, they use data visualizations to directly impact the day to day efforts of first responders. Welcome to the problem. I’m your host, Phil. Lofton.

(03:55) Phil Lofton:
Jim McClelland has a history of tackling big problems. Before he was appointed executive director for drug prevention treatment and enforcement position — oftentimes referred to as Indiana’s drugs czar — McClelland was the CEO for Goodwill Industries where he oversaw efforts to try and fight intergenerational poverty. In that effort, his team found that trying to address poverty meant trying to address a host of interconnected issues. A few months ago he sat down for a conversation with our president and CEO, Peter Embí, to talk about the opioid crisis and the lessons he’s learned along the way.

(04:28) Peter Embí:
First question really is from your perspective, what does the opioid crisis costs Indiana?

(04:35) Jim McClelland:
Well, in monetary terms. So, IU’s Kelly School of Business has done some work that calculated the annual cost in the state at about $4.3 billion. Now that’s direct and indirect costs. The, the direct costs of that are probably around $1.3 billion. That’s health care and treatment costs, criminal justice costs, deaths, disability, foster care, cost to employers. Who also by the way are having in many cases, a very hard time filling all their vacancies because they’re having so many people who can’t pass an initial drug screen. So using the four point $3 billion figure, that comes out to be about $11 million a day, and that of course said pales in comparison to the toll on human lives, the devastation to families, just the overall damage to communities.

(05:38) Peter Embí:
Sure, sure. That’s the, that’s really the cost. In your interview with No Limits, you talked about the crisis as something that had to be attacked on multiple fronts at the same time. Could you say a bit more about that?

(05:49) Jim McClelland:
Well, first and foremost, we want everybody to understand that, that this, this is really a public health crisis, but every public health crisis is both a medical issue and a social issue. Now we took a look at this. So when we, when we first started working on it early in 2017 and we thought, my, gosh, you know, we, we better have a strategic approach to this so we don’t just end up playing whack a mole. And so we developed that and we have two overarching goals that have been the same since we began our work.

(06:20) Jim McClelland:
First of course, is to help as many people as possible who have a substance use disorder achieve and maintain recovery so they can become or return to being productive, contributing members of their community. And at the same time, we want to take steps to help substantially reduce the likelihood that we will ever again be affected by a crisis of this magnitude arising from the use of any addictive substance. So, so we developed the strategic approach and understanding that, that people who have an addiction to opioids have a chronic disease, they have an opioid use disorder that requires treatment. Now, we set particularly high priorities, broad priorities. One is to do everything that we can to help keep people alive. A second is to greatly expand access to treatment, particularly medication assisted treatment, which is the gold standard for treatment of an opioid use disorder.

(07:18) Jim McClelland:
Third, to do as much as we could to help prevent other people from developing an opioid use disorder and fourth, to do a lot more to educate and inform people and reduce the stigma that is so often a huge barrier to effective harm reduction and treatment efforts.

(07:38) Peter Embí:
What impact has your work had on that?

(07:40) Jim McClelland:
FSSSA last year launched what they refer to as a humanizing campaign, which is basically an anti stigma effort, called Know the O facts, to try to educate people that, number one, an opioid use disorder is a chronic disease. It has affected the structure of the brain. It has affected your ability to make what the rest of us would consider a rational decisions. And the longer you’re on it, the more difficult it can become to get off.

(08:17) Jim McClelland:
But the good news is it is treatable and recovery is possible. So this is the basic message that FSSA launched, last year. there’s a link to it on the next level recovery website, in.gov/recovery. It’s also on FSSA’s website. And we know that several thousands of people have access to that. We know there is some improvement in the way people are viewing this as a chronic disease rather than simply a moral failure. And trying to educate people that it’s almost impossible for someone to just stop. A lot of people think, well, why can’t you just say no? Well, it just, it’s affected your brain, right? And it’s the strength off opioids, the effect that they have on the brain is so powerful, but it’s almost impossible to it to just stop without treatment.

(09:23) Jim McClelland:
And, you know, abstinence only treatment, it can work, but the success rate is single digits, right? Some studies have shown 5-6% success rate. You have a much better chance with a medication assisted treatment, which is the use of one of three drugs approved by the FDA for treatment of an opioid use disorder, combined with counseling and behavioral therapy. So we’re making some headway, but we still have a long way to go to eliminate the stigma surrounding this disease.

(09:58) Peter Embí:
Yeah. So important and it is a disease and that’s exactly right.

(08:28) Jim McClelland:
The other thing that I think is particularly important here is to understand that the younger a person starts using any addictive substance, the greater the risk of a serious addiction problem at adulthood simply because the impact that these substances have on the developing brain of an adolescent is much more potent.

(10:26) Phil Lofton:
From previous episodes. We know that the stigma, that sense of shame and dehumanization that sometimes hoisted onto people dealing with substance use disorder can be a barrier to recovery. And as you might remember from Robbie’s episode — that’s episode 8 — overcoming that stigma can be a key moment in journeys back to health. Here’s an excerpt from a talk that Peter and I had with Pam. Pontones, deputy health commissioner with some more thoughts on overcoming stigma at the local level.

(10:52) Pam Pontones:
It’s really getting folks to understand that addiction is a disease. Treatment is available and recovery is possible. And we do see that we see in folks who have traveled this journey, who have suffered from substance use disorder becoming peer recovery coaches, helping others find resources in the, in their community because they know that journey. Really engaging folks that it is a disease. It is not a moral failing. It is not a weakness. It’s not a lack of willpower.

(11:26) Phil Lofton:
And when you’re getting there, that’s, that’s really laudable and we completely agree of course. And that’s a, that’s a great message to be sending. As you’re, as you’re communicating that message through various means, how do you see that being communicated most effectively? And when you think about partners and others to help get that message across, what have you found to be most effective in that regard? Really it’s opening that conversation. So wherever

(11:54) Pam Pontones:
we are meeting with partners, whenever we are invited to give presentations, wherever we have a way to interact with the public, this is a message that we promote, whether it’s in person, whether it’s through billboards, whether it’s through websites or other presentations, training programs. Really taking that message wherever we go in whatever community, even if it’s at a booth, at an exhibit, there are a variety of means that we can do this as social media is another one. So we use every available tool that we have, wherever we are, and when we, we work with partners, we present that and in, in helping to spread that message. So really we’re starting from that same point.

(12:40) Phil Lofton:
Indiana is a pretty diverse state. Your situation in Scott County is different than your situation in Marion County, but at the same time, the factors that drive a person to substance use disorder are similar in different settings. They’ve got different upstreams factors. But I guess to get to a point, um, how does the approach look different in addressing those upstream factors in a place like Scott County as opposed to a place like Lake county or Marion county or Monroe County, where does, how do those efforts become distinct at those different regional levels?

(13:18) Pam Pontones:
That’s where a local communities and partnerships with those local communities become so important because, there may be common factors that lead to substance use disorder and the disorder itself has some commonalities, but it’s not a one size fits all approach to solutions because communities have different needs. They have different folks living in those communities. So it’s extremely important for us as a state agency to partner very closely with local health departments, with faith based organizations, with community groups and coalitions that are working very hard to combat substance use disorder in their communities.

(14:05) Phil Lofton:
And do you feel comfortable talking about any partnerships on that level that you feel like have worked particularly well?

(14:12) Pam Pontones:
Any good examples of that one certainly would be with the local health departments and rural first responders where, Indiana State Department of Health has granted resources for a naloxone procurement or actually distributed in the Blackstone kits so that we can get those to those areas that may need them and may not, it may not be as readily available.

(14:37) Pam Pontones:
We’re actively working with faith based organizations that have outreach in their communities. Um, across many different areas. That has been a strong partnership that we’ve been working to develop. We’ve continued to develop relationships with coroners so that we can get better data on fatal drug overdoses. Working with hospitals to be partners in their communities on substance use disorder education, working with other community groups, regarding stigma and how we can move folks toward treatment and recovery. And then encouraging and engaging folks who have traveled that journey of substance use disorder into becoming peer recovery coaches. How they can help others since they’ve had that experience is extremely powerful. But it’s really getting to know the local community, knowing what the community needs and then finding a way to connect communities to resources, um, to evidence based practices to toolkits that they can then use to, um, see what really works best for them.

(15:51) Pam Pontones:
One example again that we have of this is in our syndromic surveillance data. So people who present to the emergency department, with a suspect substance use disorder, those data are tabulated and collected. We look at the numbers of chief complaints and hospitals, and if those chief complaints of suspect drug overdoses exceed certain levels, the system generates a warning or an alert that is then transmitted to the local health department in that county where the hospital is located. We have a program now where individual counties in looking at this, formed a pilot to develop their community best practice solutions. You get this warning or an alert, what do you do with it? And they’ve literally developed toolkits and practices that are really ingrained in their community to see what works best for them. Because what works in Indianapolis may not be the same in Scott County and may not be the same in Monroe or, or another community.

(17:02) Pam Pontones:
So it’s really determining what works for them. And this has continued to grow. I believe we’re up to 13 counties now that are developing these toolkits and protocols for their own counties in responding because sometimes developing a blanket protocol may not work as effectively for everyone. But we can leverage a unique resources and talents within communities. And we can share best practices, um, when we come together and, and that’s what we’re all learning and everyone has stories and successes that they can share and we can all learn from one another.

(17:40) Phil Lofton:
Just as important though, is understanding what causes people to become addicted to opioids in the first place. Peter and I talked more about some of the complicated interconnected causes behind the crisis and how to address them with Jim McClelland.

(17:53) New Speaker:
It’s kind of interesting. There was a study done at Syracuse University that was published earlier this year, where they studied 500,000 overdose related deaths between 2005 and 2016 and they compared those county by county with various economic and social factors. And they found that the average mortality rates were significantly higher in areas with greater economic and family distress. Interestingly, they also found that average mortality rates were significantly lower in counties that had a greater number of religious organizations. Now their conclusion from that was that those organizations provide a community, a sense of community. And connectedness with people. And there’s so much of what we read these days that indicates there are a lot of people who really have become disconnected.

(18:59) Jim McClelland:
There was a lot of loneliness particularly in areas where perhaps there used to be one factory that provided the economic base for a community and it’s gone and it’s not coming back. And you’ve got a lot of people who have unfortunately lost hope. So, there were a couple of researchers who have done quite a lot of work on this, they call this and alcoholism and suicide diseases of despair. It’s something that I think it’s a whole society. We have a responsibility to see how can we reduce this? How can we replace despair with hope?I think we have our work cut out for us in a, a number of areas.

(19:50) Peter Embí:
That’s so important. You bring that up and it is such a complex issue for that reason. We often refer to it occasionally if not as a crisis as an epidemic. And yet it’s not an infectious disease. It’s in some ways more complex than that because of exactly what you say. These social factors make it much more complex than just a medical condition, even though it isn’t a medical condition.

(20:12) Jim McClelland:
And it is, it’s incredibly complex. There’s a lot of data showing how many of our social problems are interrelated. Sure. Poverty, low education levels, crime rates. So births to young, unwed mothers in low income households, a host of health issues, they are frequently interrelated. They frequently reinforcing compound each other. Our tendency as a society has been to try to treat each one of these in isolation from the others.

(20:41) Jim McClelland:
And we’ve not done very well. We have a lot of good pieces out there. We have a lot of good pieces in the, in the public sector in the, not for profit sector but, but typically each effort is focused on one piece of a much larger, more complex set of issues. And frankly, as a society, we haven’t done a very good job of connecting the pieces. And I think that perhaps is one of our biggest challenges where we can connect these pieces and some focused ways, and with existing resources at collective resources, really be able to see a lot more effective use of those resources. And it’s similar to, and just within the healthcare sector. For example, there’s strong comorbidity between mental illness and substance use disorders.

(21:36) Jim McClelland:
The surgeon general issued a report earlier this year that indicated that about 45% of people with a mental illness diagnosis also have a substance use disorder. Although only about 51% are getting treatment for either, and only a small minority are getting treatment for both and they’re connected with each other. Eskenazi has done some really interesting work that was published not too long ago where they, at their federally qualified health centers, they have integrated primary care and behavioral health, including a treatment for addiction and mental illnesses and augmented those services with nonmedical services, that help deal with some of the social and behavioral problems that individuals are facing. And they found that that combination significantly reduced future hospitalizations and visits to emergency departments. (NOTE: See Episode 5, featuring Andy Chambers.) So it’s a way to save money and also improve outcomes.

(22:39) Jim McClelland:
So we have a, I think this is one of our biggest challenges. We need to find ways to reduce the fragmentation, integrate services, deal with people holistically, often with the whole family. And we’ll find that we can get much better results with the same total resources that, that we’re applying to this, to a lot of these issues individually. Right now, given the, that need for a holistic view, how do you, begin to tackle this at a policy level? That’s, that’s a whole other level of complexity. So, well, I can tell you what we’re going to be doing in 2019, and the governor recently announced his 2019 agenda. There are several items there that apply to this issue, and by the way, this remains one of the governor’s top priorities, going into the third year of his administration.

(23:29) Jim McClelland:
But one of the parts of that agenda includes, reducing, taking additional steps to reduce a perinatal substance use disorder and neonatal abstinence syndrome. we, we’ve taken some steps, and supported some programs, several programs, along those lines. We’ve got to be doing more, this coming a year. We are going to also significantly expand, our support for additional recovery housing and Indiana. We need a lot more sober housing opportunities for individuals, some for men and for women, some for families with children, where, where people can support each other. They can be in an environment without the, the triggers that so often lead back to a more substance use disorder, substance abuse. And we’re going to be doing that. We also are going to fund some pilot programs using medication assisted treatment and some of our jails, this is, there’s a huge need for this.

(24:37) Jim McClelland:
Unfortunately, our jails in many cases have become defacto detox centers without treatment. Now there are a few jails that were where they are providing some treatment, but we need a lot more. What happens is if an individual, with an opioid use disorder is in jail, for a few months, let’s say, that individual is losing the tolerance, but the craving is still going to be there. And then when they’re released and they go back to using, they don’t have the tolerance for the same amount that they were using before and their risk of overdosing and dying during the first two weeks of release from incarceration, is extraordinarily high. And we’ve got, we just have to change that. Yeah. I have a young man, I have a friend who’s a, who’s 25 years old right now.

(25:37) Jim McClelland:
I was talking to him, not too long ago and by the way, his problems began when he was 15 and had an appendectomy and the surgeon prescribed an opioid. And as he said, that first pill that he took, he said, I fell in love. And that was the beginning. And so I asked him, he said, any history of alcoholism in your family? Oh yeah, it’s all over the place. He said, there’s also a history of depression in my family. You take those two, there was a genetic predisposition to this. At any rate, he’s doing really well now. But he said that, about a year ago he was arrested and he knew he was going to have to go to jail. And so he hid some stuff in his parents’ bedroom. they didn’t know anything about it.

(26:28) Jim McClelland:
And, he said, that was in jail for about three months. And when I got out, I went back and, and that night I went home that night, I used what, what I hid and he said I overdosed. Wow. And his mother found him now, he wasn’t breathing when she found him, but she, she knew CPR and they also had Narcan, the reversal agent for an opioid use disorder in the house. But because of his history, and they brought him back and he’s, he’s doing well now. He’s, so he’s on medication assisted treatment. They’ve got a good job. He’s doing well. But the point here is that this can happen and it happens way too frequently. There was one study that indicated that, a person, with opioid use disorder released from incarceration without treatment, has a 129 times greater risk of overdosing during the next two weeks than the general population.

(27:31) Jim McClelland:
I couldn’t. it’s just staggering. At any rate, we’re going to be increasing our support for, for, pilot programs in some of our jails. We’re also going to, provide some, support, to help, implement more a family recovery courts in the state. We only have seven of those. They’re there for families, involved in Chins proceedings involving substance use disorders, to improve treatment completion, a family reunification, and also reduce a, not a place out of home placement costs. The chief justice and and DCS are working together on some of these initiatives. we’re going to be providing some support, and they would like to see the number increased, to about 26 around the state.

(28:24) Jim McClelland:
We’re not going to be able to do that in the next year or two, but, but we can certainly, probably, substantially increase the, number that we do have.

(28:33) Peter Embí:
Yes. So, you know, you’re very well aware, I think he said, and in 2017, interview with Indianapolis monthly that you believe we still hadn’t seen the worst of the addictions crisis. Do you think the worst is behind us now or are we still seeing it worsen?

(28:47) New Speaker:
Well in, in 2017 there’s no question the numbers were worse. In fact, a lot of what we, we’ve been, we’ve been working on this, at the state level, out of the governor’s Office for two years now. And, and a lot of the things that we started in 2017 didn’t start having an effect until toward the end of 2017 or into 2018. but so the numbers in 2017 were really bad. This year we are seeing some encouraging signs, and the CDC posts on their website some provisional data. Now it’s very preliminary numbers and we’re not drawing any conclusions from it yet. but, there’s some preliminary, numbers on overdose deaths that indicate during the early part of this year, there actually may have been a decline in deaths. it’s way too soon to celebrate. I try to remind people that it took this epidemic, 20 years to develop. And there are no quick or easy solutions to it. we can end it in a lot less time than it took to create it, but still it’s not overnight. And even if we could eliminate all overdose deaths, we still have in this state, literally tens of thousands of people who need treatment. They have an opioid use disorder, they need treatment in order to be able to recover.

(30:08) Jim McClelland:
So, this is going to go on for a while. And then in addition to that, we have an awful lot of kids who have been affected by parental substance use disorder. And that’s a, that’s a whole nother topic.

(30:19) New Speaker:
Yeah. Yeah. I wonder if I could follow up on that. I, I appreciate what you’re saying very much and one hopes that those numbers that are just an early indication hold and we do start to see some improvement. Um, are we also seeing some differences? Do you have any sense of whether the nature of who’s being affected is changing? Um, what’s happening on that front?

(31:12) Peter Embí:
As much as you’re doing, what is it that keeps you up at night? What are the things you really worry about with regard to the crisis?

(31:18) New Speaker:
There is nothing about this epidemic that troubles me more than the impact on children. we have learned a lot over the last 20 years about the longterm effects of what are termed adverse childhood experiences. Things like, physical, emotional or sexual abuse of a kid, a death of a parent, divorce, substance abuse by a parent, mental illness of a parent, incarceration of a parent. These are cumulative. There’s a lot of research on this. it really started back in 1995, in a project of some research done by the CDC and Kaiser Permanente and the impact is cumulative. So the more of these you have, the greater the likelihood, in other words, the higher your ace score.

(32:13) Jim McClelland:
That’s how they’re termed adverse childhood experiences. Aces, the higher your ace score, the greater the likelihood of a number of negative economic and social outcomes. A host of chronic diseases, including alcoholism and substance abuse, and early death. So high ace scores don’t have to be destiny. But if as a society, we don’t do enough to help mitigate that impact, we and those kids are going to pay a heavy price just a few years down the road. We’ve got to stay aware of this and we’ve got to do something about it. And this is a responsibility of our whole society. We cannot just let this happen to these kids and to our society as a whole.

(33:07) Peter Embí:
Well, Jim, thank you so much for sharing those thoughts and more importantly, for everything you’re doing on behalf of, of, all of us, to, help, address this crisis. I really appreciate it.

(33:20) Jim McClelland:
Thank you, Peter.

(33:20) Peter Embí:
Thank you.

(33:22) Phil Lofton:
Join us in Part 2 of the episode, available now, when we hear from Josie Fasoldt and Darshan Shah about Indiana’s Management Performance Hub, and how Data Visualizations are empowering first responders to save lives. Music this episode was from Everlone and aBroke for Free. Our theme and additional musical cues in this episode were written and performed, as always, by Luger and the Senators. The Problem is produced at studio 132 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org/theproblem The Problem is written, hosted, edited and produced by me, Phil Lofton with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and Social Media Marketing is done by Jen Walker. Special thanks to Peter Embí, who slid behind the interviewer’s mic for this episode.Jim

Bonus Material

Episode 11 pt. 2: The State

How can better access to data change a state’s level of health? Learn about the unique work of Indiana’s Management Performance Hub, featuring discussions with Darshan Shah and Josie Fasoldt, and learn what you can do to help solve the opioid problem, with more from Jim McClelland.

Transcript

Phil Lofton:                  00:00               From the Regenstrief Institute, this is The Problem. The Problem is an anthological podcast dedicated to fighting the hydras of healthcare, those complicated big, hairy issues that impact healthcare on the societal level. Every season you’ll hear about a different big, massive problem and each episode within that season will feature a different discipline or industries take on that problem, how it’s being addressed, how it’s being talked about, and the trials and triumphs of those involved clinically and personally. This season is all about opioids. Over the next few episodes, the problem, we’ll talk about how we local communities, Indiana and the United States got into this crisis, how people suffering from addiction are treated and how the needle can be moved on addiction. This is a podcast for anyone who might be interested in how these problems have developed and are approached. You don’t need a PhD to be affected by them, so you shouldn’t need a PhD to learn more about them. Regenstrief institute is a global leader dedicated to improving health and healthcare through innovations and research and Biomedical Informatics, Health Services, and Aging. Welcome to The Problem.

Phil Lofton:                  01:11               Hey everybody. Welcome back. In the first half of this episode, we spoke with executive director for drug prevention treatment and enforcement, Jim McClelland, as well as deputy state health commissioner of health, Pam Pontones about Indiana’s efforts to curb the opioid epidemic. In our conversation, they stress collaboration and teamwork for achieving policy goals. In this half of the episode we’ll learn about the work of the Indiana management performance hub, a unique organization that’s connecting databases across organizations and empowering them, especially first responders to take new interesting approaches. Welcome to the problem. I’m your host, Phil Lofton.

Josie Fasoldt:                01:46               I’m Josie Fasoldt. I’m a director of engagement and analytics for the management performance hub, at the state of Indiana and I help support health and human services agencies and organizations for data driven solutions in state government.

Darshan Shah:              02:00               And My name is Darshan Shah. I get the privilege of serving as the state’s chief data officer and lead the team at the management performance hub. Last year through the vision of our governor, Governor Holcomb and our legislature, we were formally codified into law. I mean it passed the house and the Senate back in Q1 of last year. , and then in July, first of last year, we formally were codified into law, which allows the management performance hub to have sustainability, you know, going forward to be this data analytics center for the state. You know, our role very much is to, drive and improve the lives of Hoosiers through data innovation and collaboration. And we really focus a lot on that c on the collaboration piece because fundamentally we don’t create any value unless we create value through the agencies and the entities that we, that we serve.

Darshan Shah:              02:57               I heard this in a different slide somewhere and somebody called it the BLT slide, , which I consider the mph here as when you think about those three letters we’re the l and the t the, we have the ability to be able to help kind of reduce roadblocks from a legal perspective and from a technology perspective. But we still rely on the entities that we serve to for the business use cases to ensure that improved operations at services, improve policy, you know, that type of thing. I always describe what we do from an MPH standpoint. A lot of people like to take the word data and analytics and squish it together as data analytics, we are very much first and foremost a data shop. We do the analytics when the data is sensitive and it can’t be unlocked and shared with the external community nearly as easily.

Darshan Shah:              03:41               But ideally in partnerships and being able to partner with these agencies and entities externally get them the data and allow them to run the analysis to be able to drive improved operations services. Programming is obviously ideal. We work with a number of agencies on the opioid epidemic and Josie will likely be diving into that a little bit further and deeper. And we work with our Family and Social Services Agency on medicaid challenges. We have worked with the auditor’s office, you know, when it comes to financial transparency, we’ve worked with the Department of Education Commissioner for Higher Education and Workforce Development on Education and Workforce Related Challenges, Department of Correction on recidivism. And the list goes on and on. , those are all internal externally though we get a chance to work with you and your friends here at Regenstrief but also working with IBRI in Brookings and CACP and Goodwill and the list goes on. But fundamentally we want to be that transmitter that the organization that makes data available from the state and gets in the hands of key partners who can do great things with it.

Phil Lofton:                  04:40               How has the MPH’s work been used to combat the opioid crisis?

Josie Fasoldt:                04:46               Sure. So the mph has been used primarily by a drug data working group that’s connected to the Indiana Commission to combat drug abuse. And I’ll talk a little bit about that commission because it’s the stake holders there that have just really made the state of Indiana successful with using data to combat the crisis. So in 2017 governor Eric Holcomb, he established a position for the director of treatment prevention and enforcement because he really saw a need to bring both public health and public safety subject matter experts, program directors, ADA people together so that we can really think about this crisis more effectively and be more proactive instead of reactive. And Jim McClelland is that director for the state of Indiana with the governor’s office and his team corrals, all of us together for this work and the commission has a mission statement that they want to have a data driven system so that we can as a state look at substance use disorder more holistically and help individuals and communities get to a place where they can improve, recover and build their communities and just a more positive way and the mph with this drug working group, when we were thinking about the state of driven system, we heard from our state agency partners kind of two different things.

Josie Fasoldt:                06:11               One was that they needed to visualize one another’s data and see one another’s data in more real time before data was siloed in their specific agency and area. But they really wanted to share and understand what was happening with one another’s information. But then there was also this need to be able to see outcomes for people more holistically. So for example, the Department of corrections wanted to know how many of those that leave a state prison go on to die of an opioid overdose or have a Naloxone event. The Department of corrections doesn’t know that because their systems were not linked with other state systems, but that’s very important for them in order to understand if they’re being effective with their substance use treatment programs inside state prisons, that those are really hard and really good questions. It takes a lot of data work. So the mph over the last two years, that’s what we’ve been doing and helping this drug data working group with, we’ve visualized different pieces of information so that state agencies can look at each other’s stuff and more real time to see what’s going on. And we’ve connected data systems from both the public health and public safety sectors so we can start asking harder questions.

Darshan Shah:              07:25               So in agency’ gonna come with their one Dataset, we’re able to enrich you with the linkage with these seven or eight other datasets and we’re able to give them right back to them and then they were able to be able to take that information, this enriched data set to be able to drive improved decisions.

Josie Fasoldt:                07:40               I want to talk about, one of the ways that this data gets used for, for just a little bit is data visualization and the way that you guys visualize data is so interesting and, and, and so, , widespread just across different disciplines. What is the power in data visualization? Where do you guys see that data visualization really being able to drive change?

Josie Fasoldt:                08:04               I’ll maybe give the example of the naloxone heat map and that he maps available on the next level recovery website. And it shows where Naloxone is being administered here in the state of Indiana. So anytime an EMS provider goes out for an ambulance run and they provide Naloxone to an individual. We are putting that in a map so that EMS providers can patrol areas and a more efficient way. And so that communities can see what’s happening around them. They can use that map to say, this validates my experience. I need resources in my community and I can use this to show other people why I need resources to come in for treatment in my area. But I think, too, the power is just, it gives humanity behind the data. The power of data visualization is that it gives humanity and human experience behind the data.

Josie Fasoldt:                09:01               I think even within MPH, so many of us who work on this drug work, we have personal experiences of people who are struggling with substance use disorders. It affects us as people in this work. And when you look at a graph for you look at a heat map, it’s not just a pretty picture. It validates what people are feeling. Right? Right. And that’s really important for change and it just gives more ammunition to people who might feel voiceless. Yeah. And that their experiences are not being shared. Yeah, and I think it’s just the way MPH is just here to support that voice for people in the state, including our own people that work in our agency.

Phil Lofton:                  09:43               I love that you put it that way because when I was, when I was on the site this morning with my friends, we were, you know, zooming around on the map and one of the things that you do instinctually is you start talking about it in terms of neighborhoods, right? It’s not this event that happens at an intersection. It’s, it’s, oh my goodness. I was just there last week at this restaurant and there was an overdose that happened there. You start to really, really put it into real world context. I think that that is such a beautiful way it humanizes the data, right?

Josie Fasoldt:                10:15               The first thing you do is you put in your address.

Phil Lofton:                  10:18               Yes, yes, that’s so true.

Josie Fasoldt:                10:21               We want to know what’s happening with your neighbors, right? And your community. It’s a data set that I think not a lot of people in the general community would think, oh, this could make a really big impact in my neighborhood. If, if I had a naloxone heat map, right, but we are able to work together and see there’s this unique data set out there and a unique, , medication being given called Naloxone. And if we actually made that more public than it could empower EMS providers as they patrol and give communities the ammunition they need to know what’s happening in their areas. That’s an interesting one and it’s not one that people would generally think of. And so that also helps us to just not put data in a box too. You know, like yeah, there could be a very interesting use case for a specific dataset and we shouldn’t just limit a dataset and thinking like, oh, that’s not going to be useful. , because really anything can be useful with the right use case behind it.

Darshan Shah:              11:24               One of the things, Josie, I know you described to me before that I thought may be helpful for some of our listeners is, by making the data available through the Naloxone heat map, , it’s allowed us to actually improve the data acquisition and color that in further, can you touch on that?

Josie Fasoldt:                11:42               Yeah. So when we released the Naloxone heat map, what can happen, it can validate people’s experiences but can also not validate their experiences, which is another important thing. So some communities and counties were saying, I don’t see our naloxone data here. I know that there’s more naloxone deployments happening in my community. Yeah. And it helped us as state agencies, MPH and the Department of Homeland Security to dig deeper and see well is there a disconnect in the systems? Is there like a technology problem where data isn’t coming in like it should? And so we’ve been able to uncover some of those things so that the data can flow through to the state more. And then those communities stories will be shown on that heat map. So putting data out just makes data better.

Darshan Shah:              12:32               If you get the information out, people can consume it, people can drive better decisions with it. And then once they see the information they can actually improve the data quality, you know, upstream, which only creates this virtuous circle to continue to allow this to improve.

Phil Lofton:                  12:46               And thank you for talking about things in term of upstream and downstream. Cause that’s a perfect segue to our next question. And we’ve touched on this a little bit already but, but I’m interested to hear more about this. What are some of the downstream implications that you two have seen in terms of starting to visualize this stuff, starting to make data more available to agencies?

Josie Fasoldt:                13:06               So another downstream effect that we’re seeing at the state is really just around this collaboration with data sharing. The stakeholders involved in this drug data working group are doing so much robust sharing. Other states cannot believe what we’re doing. A call us all the time and want to talk to us and ask how did you get this started? How are you able to share this kind of data together with each other in a way that’s secure? And , also empowers the state agency as the subject matter expert.

Josie Fasoldt:                13:40               Right. But we’ve been able to do that together as a group and it’s very surprising for other people. But the downstream effect is that you just have more informed decision making and you know, the right people to talk to about certain information in another state agency. And, , you’re just able to actually connect even deeper into how we can help solve the opioid crisis in our communities and not just work within your silo. Right. How are you guys able to do it? What’s the secret? , it’s just people, I’m serious. It’s just, , having people who want to build something and do something good and new and necessary and it’s sometimes hard and scary because no one is doing it. Yeah. But I think that there are just a lot of people and just a lot of good leadership at our state that does want to get this kind of stuff done, you know?

Darshan Shah:              14:44               That was a great answer. And I could not agree more than with everything that Josie just mentioned. We talk about how the MPH has, was codified formally in just this past July. That takes an incredible vision from our governor. It takes an incredible vision from our legislature. A requires incredible amount of support from the various agencies who actually own the data to make it available to this overall kind of combination too. To be able to realize that one plus one doesn’t equal two one plus one equals five one plus one plus one equals 15 and it just this exponential kind of growth associated with it. But I think that’s actually in many ways. It was probably one of the biggest surprises I think I had, you know, coming into this role because I kept hearing, you know, coming in that Oh, you’re going to get so much push back.

Darshan Shah:              15:34               There’s going to be so many folks are going to be, there are not going to want to share this data. They’re going to want to live in their data silos. And it’s so not true when you go out and you speak to different agencies, when you speak to different external entities, everyone wants to share. They’re just looking for the channels to be able to figure out how to do it legally and technically in order to be able to make sure that this stuff is done appropriately to be able to drive the right outcomes. , so I think that’s probably been the biggest surprise. I think for both of us. It’s just around around the willingness and the excitement and the energy around, you know, from our governor to our legislature, to all the agencies and the extra groups that we work with, to be able to come together to be able to kind of drive these broader outcomes.

Phil Lofton:                  16:15               The energy doesn’t end at state organizations and nonprofits. Though many people in Indiana and elsewhere in the country are itching to do something. To close out the talk that Peter Embi and I had with Jim McClelland, the bulk of which was featured in the first part of this episode, we asked him what the average person could do to make a difference.

Peter Embi:                  16:32               Just thinking as you’re talking here, imagining the average person listening to this podcast, what, I imagine you’ve thought about this with all your discussions with folks, what can the average person do about this to help it from your point of view? The average citizen who just recognizes it’s a concern. Maybe they happen to be one of the lucky ones that don’t have somebody in their family, but they just want to do something about this. What would you recommend?

Jim McClelland:            16:56               Well, I think, certainly they can learn as much as they can about it and help educate others, help reduce the stigma. ,They also might to want to volunteer to be part of a support group for people in recovery and help them stay on track. There are a number of volunteer recovery support groups around the state. Some of them are church related, some of them aren’t, but individuals who just care and they, and they want to help and so they, they wrap themselves around people and help them stay on track.

Jim McClelland:            17:34               And if, if and when they do relapse, why, help them get back on track. So that’s something they can do. They also might consider, take a look and see if there is a local coalition where they be able to make some contribution. I would also say that efforts to help prevent substance abuse among young people are particularly important mentoring programs for a young people who don’t have… Well let’s put it this way. They need a positive long term relationship, with a responsible adult, and there are a lot of kids like that. Supporting afterschool programs for kids. Supporting early childhood development programs for kids can also be helpful. But, there is so much you can do with kids. I’m just really concerned about doing more to give kids alternatives to drug use.

Phil Lofton:                  18:47               Maybe you listening to this might feel energized to try and make a difference in your nine to five. Maybe you’re a scientist looking for a way to make your research, have more of an impact. Darshan Shah has some thoughts about how you can help

Darshan Shah:              18:59               When you think about the MPH, you know, we very much want to be an employer of choice, a partner of choice. And in this discussion, you know, , we’re obviously always seeking different, and , very, very difficult to find folks to kind of join our team. So that includes folks in the data management of the data architecture type of world specifically. Right now we’re seeking that. But in addition to that, you know, we have various programs in place. We have employee interchange agreements, you know, where researchers are coming in house with the MPH and working side by side with our team to be able to drive the analysis necessary to be able to improve, you know, state policy decisions.

Darshan Shah:              19:41               But at the same time being able to help, you know, get access to some of this information for the researchers to be able to thereby publish. So there’s these employee interchange agreements that could be possible. There are donated professional programs where we are seeking, you know, some of the middle large employers around the state who are potentially looking at supporting their corporate social responsibility needs, but also create really interesting and exciting development opportunities for their employees to do a bit of a sabbatical, you know, with the MPH to be able to improve the state’s interest but also be able to create better connectivity, you know, with these organizations. , so this was just a few things that I would love to, just kind of mention to your listeners if, if there are researchers are interested in employee interchange agreements, if there’s larger employers listening who want to participate or donate your professional program, if there’s a data architect out there who is really interested in making a huge impact, you know, with the state, we would love to hear from all of you. And then of course, you know, if there are specific data sets that we can provide at the state, that can further your interest. Please let us know.

Phil Lofton:                  20:47               This season, we’ve looked at the Opioid crisis from so many different angles, we haven’t covered everything, of course, but I hope this podcast has given you a better appreciation for the depth of the issue. After all, as much digging as we’ve done in the past several episodes, we’ve barely scratched the surface.

                                                            Join us next time as we rewind and take a look back at the stories we’ve covered this season. It’s our first season finale, on The Problem.

Phil Lofton:                  21:14               Music this episode was from Broke for Free. Our theme and additional musical cues in this episode were written and performed, as always, by the Organization of Cartographers for Social Equality.

The Problem is produced at studio 132 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org/theproblem

                                                            The Problem is written, hosted, edited and produced by me, Phil Lofton with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and Social Media Marketing is done by Jen Walker. Special thanks to Peter Embi, who slid behind the interviewer’s mic for this episode.

 

Bonus Content

Bonus Interview: The Bigger Picture

Is the opioid crisis improving? What’s the real face of the epidemic? Find out in this week’s episodes of The Problem, featuring Joan Duwve of the Richard M. Fairbanks School of Public Health at IUPUI.

Transcript

(00:00) Phil Lofton:     
From the Regenstrief Institute, this is The Problem. The Problem is an anthological podcast dedicated to fighting the hydras of healthcare, those complicated big, hairy issues that impact healthcare on the societal level. Every season you’ll hear about a different big, massive problem and each episode within that season will feature a different discipline or industries take on that problem, how it’s being addressed, how it’s being talked about, and the trials and triumphs of those involved clinically and personally. This season is all about opioids. Over the next few episodes, the problem, we’ll talk about how we local communities, Indiana and the United States got into this crisis, how people suffering from addiction are treated and how the needle can be moved on addiction. This is a podcast for anyone who might be interested in how these problems have developed and are approached. You don’t need a PhD to be affected by them, so you shouldn’t need a PhD to learn more about them. Regenstrief institute is a global leader dedicated to improving health and healthcare through innovations and research and Biomedical Informatics, Health Services, and Aging. Welcome to The Problem.

(01:11) Phil Lofton: 
Hey, everybody. When we talked with Joan Duwve about the truths and misconceptions a lot of us have around the opioid crisis, It was a good fact check for a lot of the myths out there. You might remember that during that discussion, we briefly talked about some of the projects that she’s working on to help combat the opioid crisis. She’s been pretty prolific with a work combating addiction and she’s been the lead on two IU grand challenge projects. I wanted to make sure that we had an opportunity to dive into those a little bit more, so today’s bonus episode is entirely about her work with the grand challenges over the last few years. This is the problem. I’m your host Phil Loft. Project ECHO is a movement to connect local primary care teams with interdisciplinary specialist teams to spread knowledge and amplify local capacity to provide best practice care for complex chronic health conditions. ECHO’s goal is to enable rural and traditionally underserved populations to receive high quality care when they need it close to home

(02:11) Joan Duwve: 
ECHO stands for the extension of community for community healthcare outcomes. You’re, you’re working with a group who’s helping you understand how to effectively treat patients.

(02:24) Phil Lofton: 
ECHO sounds awesome. It sounds like it’s a really great resource to, to sort of spread that knowledge to areas that really, really need it and to reinforce folks that are really trying to be better doctors and better providers. What sorta adoption rates have you seen? What sort of utilization? How have you seen so far?

(02:39) Joan Duwve: 
So currently, at the Fairbanks School of public health, we offer two ECHOs. We offer a hepatitis C ECHO, so training providers to treat patients with Hepatitis C. We know that Hepatitis C is spread very, very efficiently amongst people who inject drugs and we’re seeing skyrocketing rates of Hep c across the state of Indiana. Previously only gastroenterologists or infectious disease docs were permitted to prescribe drugs to treat hepatitis C. So we really limited access to treatment for Hep C. Now we know that Hepatitis C eradication is, is possible.

(03:18) Joan Duwve:
If we were to get rid of Hepatitis C, then we wouldn’t be spreading it in communities. But to get rid of it, you have to treat people who have it. Drugs were very, very expensive. I think that’s why the, the access to them was limited. We actually were able to work with FSA and Medicaid to engage them in discussions around training providers to treat patients with Hep C using ECHO and we said if we’re able to get providers to participate, will you allow them under Medicaid to prescribe treatment for hepatitis c? And they said yes. So we were at that point just thrilled that we were going to be able to expand access and there’s a little box now in the prior authorization form that asks, are you an ECHO? Are you participating in the ECHO program? And it doesn’t have to be our ECHO clinic.

(04:11) Joan Duwve: 
It can be an ECHO clinic from, from anywhere, but you’re, you’re working with a group who’s helping you understand, um, how to effectively treat patients. What’s best practice for treating patients with Hep c? I think overall we’ve, we’ve touched about 30 providers with our Hep C ECHO and not all of them are currently prescribing. We’re actually going to work with Medicaid to get that data to see who’s prescribing, who’s treating, but we have, we have several providers that have presented to us multiple cases and we know they’re treating them. We had one advanced practice nurse who presented a really, really difficult patient, a patient coinfected with Hep b, who was also using alcohol and I’m on medication assisted treatment for an opioid use disorder, um, and worked with her to get the patient the appropriate treatment for the patients hepatitis B and Hepatitis C, and to get the patient into treatment for alcohol use disorder while maintaining her on medication assisted treatment for her opioid use disorder.

(05:17) Joan Duwve:
Really complicated, and an advanced practice nurse is totally able to treat a patient like this, although historically has not been permitted to do it. So we supported that provider while she was treating this complicated patient and um, we’re starting to see some great outcomes. So yeah, we’ve had 29 participants for our hepatitis C representing 13 counties. We actually have one provider who joined us from Illinois. There have been 31 case presentations, so these are 31 patients that we have learned about. It’s all de-identified, so nobody knows, but everybody learns from these case presentations and you know, it’s kind of like takes you back to medical school and this is how we learned and it’s kind of fun. I think that I learned so much. I know our providers learn a lot and our experts learn a lot too.

(06:14) Joan Duwve: 
And I, I’ll never forget, our hepatologists who’s really amazing, um, who, you know initially said, well, if somebody is using drugs, you can’t treat them for hepatitis C. it’s sort of the way things used to be done. And we were able to provide education for the hepatologist about why it’s important to treat people even if they are still using drugs to prevent ongoing transmissions to work towards hepatitis C eradication. So if you will, it’s like the perfect marriage of medicine and public health, Hepatitis C’s and infectious disease. And we have an epidemic and there are public health approaches to um, you know, eliminating hepatitis C. and so the only way we can do that as to work with medicine and it works best if we work together.

(07:01) Phil Lofton:
So tell me about the LGBT ECHO because that sounds super fascinating.

(07:05) Joan Duwve: 
Yeah, yeah. We’re doing LGBTQ+ care ECHO and we’re partnering with the Department of Adolescent Medicine and the transgender health clinic at Eskenazi.

(07:15) Joan Duwve:   
We know that people who identify as LGBTQ have higher rates of addiction. And so that’s how this all fits in with the addictions grand challenge. We’re really working on preventing people from who are at risk of developing addiction from developing addiction. And we know that if people get appropriate care, if they’re able to connect, if they’re humanized and they feel like they are valued members of society, they are less likely to engage in substance use. So we are really working to help train providers around the state. And it’s really cool. We have a pastoral care person who really is interested in learning more about how best to minister to these patients. So it’s a very, very interesting and diverse group of individuals. We have people who represent campus health from campuses around the state, we have primary care providers, we have behavioral health experts, psychologists, all who are caring for people who identify as LGBTQ.

(08:24) Phil Lofton:   
So what are some of the ways that ECHO, provides information to providers in that specific way? Is it just educating providers on the specific health needs of Lgbtq plus individuals and that, or tell me more about this program.

(08:39) Joan Duwve: 
Yeah, it’s, it’s that, um, you know, so what are the specific health needs, um, for this, this population, also how do we provide culturally appropriate and sensitive care , to any group of individuals who, who may feel a little bit sort of on the margins of society, how do we embrace communities, um, to, to make them feel like they’re valued and welcome. And a lot of that really is based on how we meet them, where they are and how we don’t have any preconceived notions. We ask questions and we are very open in hearing and learning from our patients, and then providing the care that they need.

(09:34) Joan Duwve:
And I think that just being welcoming, being kind is really, really critical to helping people feel comfortable accessing care and services that they need to stay healthy. We are going to be launching a pain management ECHO and pain management is again, one of those prevention ECHOes related to addictions. And then we’re going to be working with folks from the Department of corrections inside three prisons in the state of Indiana training peer educators.

(10:41) Joan Duwve:
And the beauty of this is that you are training folks inside the prison. Folks who you know, have done well during incarceration. And these are the individuals that get recommended by the people who work in corrections and then we’re going to train them to be peer educators inside the correctional facility so they can help educate their peers inside the facility about healthy behaviors and how to prevent transmission of things like hepatitis B, Hepatitis C, HIV. They’ll talk about substance use disorder, they’ll talk about healthy eating, they’ll talk about tuberculosis, they’ll talk about, you know, why it’s important to get a flu vaccine. Not only do we have this going on inside a correctional facility, peer to peer, but once people do get released back into the community, they’re trained, they have, you know, a skillset that they can use to get a job which hopefully will support them

(11:41) Phil Lofton: 
But her work developing the ECHO’s isn’t her only effort with the IU grand challenges. She’s also recently wrapped up the 2018 Indiana public health conference, which provided educational and networking opportunities to public professionals from all around the state.

(11:54) Joan Duwve: 
That was amazing. It was so much fun to plan. So this conference, we did a conference two years ago and uh, the theme of the conference was health equity and this year we decided that because we’re in the midst of the addictions grand challenge, we would do a conference that focused on harm reduction and this just became so much fun because we were able to present harm reduction from sort of multiple learning perspectives. So we were able to engage people who participated in the conference. We provided naloxone training. We had a syringe services mobile van that the Tippecanoe county brought to us.

(12:42) Joan Duwve:
We had a model safe injection site, just to kind of start the conversation, what does this look like? What does it feel like to dispel some of the rumors what happens in this space? What else did we do? I think those were the main interactive. I’m sure there was one other that I can’t remember. One of our keynote speakers came from the Boston healthcare for the homeless initiative and talked about some really innovative harm reduction services that they offer. And so we were able to learn a lot from him about their mobile homeless health initiative where they’re actually starting people on medication assisted treatment. Using this mobile unit, so the find them on the streets and they’ll engage in a conversation if people are ready. They start then. And then also they talked about a bathroom initiative that they have, knowing that if people use drugs in public, they’re often going to use them in a bathroom isolated.

(13:53) Joan Duwve:
And that’s where a lot of people are found, overdosed and dead. And so they created a bathroom initiative where an alarm sounded if somebody hadn’t moved in a bathroom for, for awhile, which was really fascinating. And obviously it’s, it’s something that they’ve just started and it’s not widespread yet, but I think it made a lot of people think about what were people are overdosing if they are, you know, part of the homeless community and how we might be able to, to identify and respond to those overdoses.

(14:27) Phil Lofton: 
I love that, that train of thought too, because it expands this definition of WHO’s responsible for helping people. Right?

(14:34) Joan Duwve:
Right. Yeah.

(14:35) Phil Lofton:
Not just the doctor’s responsibility. It’s not just the community health workers responsibility. It becomes this thing that’s shared amongst the community. We all have to keep an eye out for each other.

(14:44) Joan Duwve: 
Exactly. Yeah. It is cool. And I think that’s, I think that’s so true.

(14:48) Phil Lofton:
Towards the end of our talk, I asked Dr Duwve, just out of curiosity, why she’s chosen to dedicate such a big chunk of her career to fighting addiction.

(14:56) Joan Duwve: 
You know, I, I grew up in the seventies and I remember there was a lot of drug use. I remember at my middle school kids being taken away by ambulance, right at the front door and I think I was deeply impacted by the effects of drug use.Even at that early age, I remember the stories about heroin, and just really had this feeling that, it must be an incredibly difficult addiction to overcome based on what I had heard and read. And then we didn’t see heroin for a very long time. I think the next thing I remember about heroin is being in medical school in East Baltimore, and watching drug deals on the corner right outside our medical school, one of the lab windows.

(15:59) Joan Duwve:
And then watching the levels of crime increase, and hearing about people overdosing on doorsteps. It just felt so out of control and unsafe to me at that point. And then fast forward to the early two thousands and two small kids and family here in Indiana. I’m in a suburb and I turned on the news one night and I saw a mom talking about her child who had died of a heroin overdose. And I can’t even describe to you the gripping fear that came over me when I heard that story because I just really hadn’t heard or thought that we would be facing a heroin epidemic again. Or that I would be the mother of two small kids trying to raise them in a world where this will continue to be a risk. And thinking a lot about how that was going to change the conversations I had with my kids.

(17:09) Joan Duwve:
And then a few years later practicing in practicing medicine in that small, in that community, I learned that one of my patients had died of an overdose. And this was a kid, a young man. He was probably in his early twenties at the time, who came in to see me periodically. He would talk to me, would bring me chocolate bars. I knew his family and the most loving family. And I had no idea that this was going on in the background and I to this day wonder what, how I could have known, what questions I could have asked where he got the drugs because it wasn’t from me. He didn’t get opioids from my practice. Other patients were. I don’t mean to suggest that I, I was not at all complicit in this whole epidemic. We as providers were, but not this guy. And when he died and when I learned how and why I, I grieved and became resolved that I needed to really be part of the solution.

(18:31) Joan Duwve:
And to understand what was going on. And then I joined the State Department of Health. It wasn’t a priority problem when I joined for the state in 2008 and it wasn’t until 2011, 2012 that I started to really pay attention from the state perspective. And at that point, I think I saw a statistic that showed a 500 percent increase in drug overdose deaths between 1999 and 2008. And I just said, it’s time to spring into action. Here we have a problem and states around us have a problem and we’ve got to do something. I was fortunate enough to have met some amazing people from the office of the Attorney General, um, so Greg Zeller at the time, and Natalie Robinson was the person who, who I originally had contact with and she herself was very, very interested in doing something together. The two of us with some other staff from the office of the Attorney General put together a task force and that task force, actually, we spread our wings really, really widely, to include as many people as we could.

(19:54) Joan Duwve:
So law enforcement and healthcare professionals, people with a history of substance use disorder, people who had lost family members, pharmacists, behavioral health care, many state agencies, and we actually really started pressing the conversation at the state level. So I think that once we started doing that, more people became interested, began to identify this as a problem, a serious problem that really needed some significant interventions. And we started asking the hard questions. What about Naloxone? You know, and I remember conversations when we first introduced the idea of expanding access to naloxone. The conversations when something like this, Oh, you’re just gonna encourage people to use drugs or why would we want to do that? And those were difficult comments to hear, but I understand, right? There was just not a whole lot of knowledge about addiction as a disease. And about the, the opportunity for people to get into longterm recovery, into really be positive influencers in this space in the state of Indiana. So we have come a long way

(21:25) Phil Lofton:
Music this episode was by Everlone. Our theme, and additional musical cues, were written by Monopod Infinity. The Problem is produced at studio 132 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at theproblem.regenstrief.org. The Problem is written, hosted, edited and produced by me, Phil Lofton, with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and Social Media Marketing is done by Jen Walker.

Episode 7: The Man in the Ambulance

Learn about Shane Hardwick and the Shalom Project, a community-based initiative helping EMTs and police officers get help to those who need it most.

Transcript

(00:00) Phil Lofton:
From the Regenstrief Institute, this is The Problem. The Problem is an anthological podcast dedicated to fighting the hydras of healthcare, those complicated big, hairy issues that impact healthcare on the societal level. Every season you’ll hear about a different big, massive problem and each episode within that season will feature a different discipline or industries take on that problem, how it’s being addressed, how it’s being talked about, and the trials and triumphs of those involved clinically and personally. This season is all about opioids. Over the next few episodes, the problem, we’ll talk about how we local communities, Indiana and the United States got into this crisis, how people suffering from addiction are treated and how the needle can be moved on addiction. This is a podcast for anyone who might be interested in how these problems have developed and are approached. You don’t need a PhD to be affected by them, so you shouldn’t need a PhD to learn more about them. Regenstrief institute is a global leader dedicated to improving health and healthcare through innovations and research and Biomedical Informatics, Health Services, and Aging. Welcome to The Problem.

(01:05) Phil Lofton: 
Hey guys, it’s me, Phil. Today’s episode is about the EMT perspective on the opioid crisis, and it’s largely going to be a conversation between myself and Shane Hardwick, an EMT with Indianapolis EMS and Shepherd Community Center. He’s in a unique position from most EMTs, and you’ll hear why in just a bit. But first things first: Welcome to The Problem.

(01:44) Shane Hardwick:
My name is Shane Hardwick. I’m a community paramedic with Indianapolis EMS.

(01:48) Phil Lofton: 
I met Shane a few weeks ago at the studio for our interview after my boss, John, was gracious enough to connect us. I got the impression at once that he was good with people — great with people, in fact — and he had a confidence that made me think he was exactly the sort of person I’d want taking care of me if I was hurt. It was clear that he loved his job.

(02:07) Shane Hardwick: 
I think being a paramedic is rewarding. No day is the same. I’m not stuck behind a desk. It’s a phenomenal job. You get to do and see some really incredible things.

(02:20) Phil Lofton:
How did you get involved with EMS?

(02:23) Shane Hardwick: 
Oh, well, going back a couple decades, ever since I was a kid I wanted to be a paramedic, and I can actually take it back to when I was leaving detention in fourth grade. I saw a crash happen right in front of me and, and, you know, just seeing the fire trucks and the police cars and the ambulances roll up. It went from chaos to calm just when the people started showing up. So that was something that was always kind of … I just always liked it. So at age 14 I enrolled in an EMT class and by age 16 I was the youngest certified EMT in the nation. Yeah. I had to go before the state commission, and they waived my age because you’re supposed to be 18 and kind of off to the races.

(03:18) Shane Hardwick: 
So I started hanging out in the Wishard ER on the weekends. What teenage kid doesn’t hang out in a level one trauma center on the weekends? But yeah, I’ve always done it. I’ve always loved it. I’ve actually officially been hired and employed for the last 25 years as an EMS professional.

(03:41) Phil Lofton: 
What does a day in the life look like for you?

(03:43) Shane Hardwick:   
Um, I think my day looks a little unique compared to most, EMT/paramedics and the fact that, my deployment is a little different. I’m not on an ambulance. I’m actually assigned to a police officer, so I work in a very, um, high violence, high over-utilization of 911, a lot of need neighborhood on the Indianapolis Near East side and I’m partnered with a police officer and we don’t just attack community paramedic-type stuff, of which the bread and butter is your repeat congestive heart failure patients, your repeat COPD-ers, diabetics, etc. We deal with that. But we also try to just kind of tackle quality of life in the neighborhoods. So we’re just as concerned with the diabetic that keeps calling an ambulance because they can’t get their insulin. We’re just as concerned about that as we are prostitution or illegal dumping and alleys. You know, we try to tackle the whole problem and it’s a… it’s a unique program. It’s actually Shepherd Community Center who spearheads that program. It’s at three years now, and it’s a very rewarding position.

(05:01) Phil Lofton:
I want to talk to you more about this. So it seems like you have a big heart for caring for the whole person. Talk to me more about how the program you’re involved with does that.

(05:13) Shane Hardwick:
So with our program, we use over-utilization of 911 as a symptom of an otherwise larger problem. So if you get the same person going to the hospital over and over and over again, obviously there’s something in the bigger picture that’s being missed. There is some need that’s not being addressed. And we’re kind of the last rung on the ladder, the last layer of the social safety net. So the same thing happens with the stories that you hear about the same person getting Narcan eight, nine, 10 times. And I think what’s different about us is not only do you have a paramedic and a police officer partnered in this area proactively identifying these people, but the back end resources that we have, we, we employ a Shepherd employee, a certified drug counselor, and we’re able to refer back to that counselor and kind of close the loop a little bit.

(06:16) Shane Hardwick: 
There’s more resources. And what we found are people that actually… they have that moment of clarity or “Today’s the day that I need to get clean.” What we don’t want to do is say, well, here’s a pamphlet, go call these people, we’ll have a bed for you in six weeks. So to have this clinical addictions counselor on the back end, he’s able to start working the phones and he’s able to start getting them into different hospitals, different treatment centers. But at the end of the day, we’re building a relationship with these folks, and we’re kind of showing them that someone does actually care about their wellbeing.

(06:59) Phil Lofton: 
What sort of an impact do you think that makes? Do you think that that’s a thing that people get all the time?

(07:04) Shane Hardwick: 
No, I don’t. I don’t think that’s something that people get all the time, and one of the things that I think we’ve become keenly aware of on the job that we have is that loneliness is part of that epidemic. It’s not just the addiction, but you know, what’s the root cause… and to have people that are otherwise strangers that are pouring into these folks’ lives, I think it does have a profound impact. And to know that there’s someone out there that truly cares about you and your wellbeing is, um, that’s a pretty darn empowering thing.

(07:40) Phil Lofton:
You’ve been involved with Shalom for three years now. How did that start? How did you become involved with it? Were you involved from the outset?

Shane Hardwick: 
No, actually it was the most amazing timing ever. I had my former career. I had been an administrator and had taken the last six months off and was a stay at home dad. I worked part time as a paramedic and kinda wanted to get back in because of the tuition reimbursement.

(08:12) Shane Hardwick: 
I kind of wanted to get back into full-time employment through IMS, and so I called called Dr. Miramonti and said, you know, you probably don’t have anything that resembles this but I need 9-5 Monday through Friday, and I’d really like to do outreach and um, “hat in hand,” you know. … And ironically enough, within a week of me darkening his doorstep, he had this meeting with Shepherd and the theory had been born of the Shalom Project and bringing a paramedic on board. So it was amazing timing. Um, and you know, Dr. Miramonti being the cool guy that he is was just like, “You know, I think I got something for you.” I left it at that. So I was kind of in limbo for about a week. And I met with the director of Shepherd, Jay Height, and it was a very eye opening interview with this gentleman where I used to work — the Near East side, years ago — and you know, you have a front row seat to what poverty does to families and the things that human beings are capable of, and after a while you become a little jaded, and you start questioning a lot of things.

(09:32) Shane Hardwick: 
And so I had promised myself pretty early on in my career that I wasn’t going back to this neighborhood. This came up and my curiosity was sparked. So I took the job, and I’m talking with Jay Height on the first day, and he’s painting a very bleak picture that the homicide rate is 200% greater than the average neighborhood, or the average zip code in Indianapolis. Overdoses are over 340% greater in the zip code, nonfatal shootings are 400% greater. The largest demographic we have is single mothers. Thirty-five percent of all houses are abandoned. And you know, I’m just getting peppered with these statistics, and I’ll never forget, he looks out the window and there were some kids playing outside. He just goes, “You see that young man out there?” And I said, “Yeah.” And he says, “His parents tried to sell him for drugs three years ago.” And you know… you hear that and… you’ve maybe heard stories like that before, but to actually see this young man out there playing, I mean, it just works on your heart. And not that one program or one person is going to, you know, knock the dust off the problem as much as it is people coming together in a collaborative effort. And I was hooked. I said this neighborhood needs some help. Somehow.

(10:58) Phil Lofton:
The part of Indianapolis where Shepherd Community is based did need some help. In 2014, the city looked at the neighborhood and found that it had 400% more shootings, 400% more mental health issues, and 300% more overdoses than the rest of the city. In response, Shepherd started the Shalom project, a project centered on three ideas: feeding the hungry, improving housing and Shane’s part, promoting health.

(11:25) Shane Hardwick:
And so it was off to the races after that first day in the car together with my officer partner. I very clearly remember we both agreed on it and said, look, we can’t overpromise and underproduce with this neighborhood. And so that was day one, hour one. We made a promise to each other not to do that. So I think we’ve kept to that. I think we’ve done a pretty solid job of gaining the trust of the residents in the neighborhood.

(11:56) Phil Lofton: 
Can you share with me maybe a story about a time where you felt like you were really, really making a difference with this program?

(12:07) Shane Hardwick: 
We brought our addictions counselor to the emergency room with this girl said enough, 30 years old, raging alcoholic shakes the whole, the whole shooting match and you know, we’re, we’re able to say, hey, you know, and the doctors are like, this is amazing. You did. You do what? I remember one guy that they called 911 and he just, he literally said enough’s enough. And we, we, we backed onto the run and we get there. And the ambulance crews like, well, okay. And he’d called the ambulance to say today’s the day that I want to get clean and we know that he goes to the emergency room, they’re going to sober him up and they’re going to give him a pamphlet and send him on his way. So we get there and we were able to bring our addictions addictions counselor to the scene. Numbers were exchanged the next day. Our addictions guy actually had made phone calls, work the phone that afternoon, was able to get him into rehab the next day, sober him up. He’s able to dig up funding for like a 30 or 60 days sober living.

(13:19) Shane Hardwick: 
So he’s in sober living for 60 days. He comes out, he’s like a totally different human being. Problem is he still lives in the same house, in the same neighborhood that has been a flop house. And so now you’ve got this guy who’s clinging on to sobriety and he’s terrified because people are just showing up at his house at 3:00, 4:00 in the morning.And he can’t seem to get out of that cycle of people just assuming that it’s okay. So we ended up having former addicts that wanted to volunteer their time, actually come to the house. They’d kicked in his door so they were able to put in a new door, a new deadbolt, new frame. And we ended up at the end of the day, Shepherd and their staff ended up helping this guy sell his home. We moved him into another apartment and to this day we’re still engaged with this guy and from start to finish from the day I met him to today, is a totally, totally different human being.

(14:22) Shane Hardwick:
But we were able to come alongside him and we were the only people that were positive influences in his life in years. So, I mean, it’s, it’s, it’s hard and it’s kind of like pick your favorite kid, you know, it’s hard to think of like the, the, the best story to, to, to put a bow on it and say, this is what we do. Addiction. Addiction seems to have no boundaries. It’s not, it’s not, um, socioeconomic. It’s not gender, it’s not race. It seems to be pretty equal opportunity. And so, um, you know, we have just as much. It’s just as impactful when it’s a 22 year old female as opposed to a 65 year old male. It just feels good to be able to kind of come alongside folks in and help them out and say there is a better life out there for you.

(15:25) Shane Hardwick:
I’ll tell you a story. This is kinda just the way our program works because we’re out in the neighborhood. We pulled up on a man that had been stabbed to death in an alley back in July, June or July. And we were the first people there and so we pull up and there’s a man doing CPR on this guy and, you know, hey, thanks, we got it from here. So we started working this guy and, and ultimately he passes away. Fast forward the next day and one of the fire crews in the area calls and says, Hey, we’ve got these people, we’d like you to come help out. They’re, they’re living in the parking lot of a grocery store. So we get over there. We’ve got four adults living in a Ford focus. Yeah. So we got four adults living in a Ford focus. Turns out the guy who lived in the driver seat quite literally was the same guy who was doing CPR on the gentleman the day before. So they had a flat tire. Um, they were trying to make ends meet. They were obviously, they were addicts. And so through some of the connections we made, we were able to make phone calls and say, Hey, this guy’s got a flat tire.

(16:44) Shane Hardwick: 
They’re trying to get wherever we know a tire shop in the neighborhood and you know, it literally was like, Hey, this guy, this guy was a good Samaritan yesterday and helped us out. Is there any way you can help him out? So we were able to get the tire to the tire shop. They replaced it free of charge just because they had done what they did the day before. And so while we’re talking to him, we had a very frank conversation and um, I was um, kind of collectively giving public safety and public of Indianapolis a pat on the back that last year. It seemed like we were giving out Narcan by the gallon and this year we’re just not really seeing it that much and what a great job we’ve done. And obviously someone has stemmed the tide. And um, it was a very sobering comment that the girl I was talking to, she goes, oh, make no mistake about it. It’s not what you’re doing. It’s the fact that the drugs in this town are not good anymore. And it was kind of frightening that basically the potency of the drug wasn’t fatal anymore. It wasn’t killing them. So it’s, it’s, I don’t know, it was, it was a very, it was a very sobering thing to hear from somebody who was like, make no mistake about it. It’s not what you guys are doing. We just can’t find any good drugs. So you hear that and that’s a little disheartening. And I think what you’re going to see is a pretty big uptick in methamphetamines.

(18:16) Phil Lofton:
Why do you say that?

(18:19) Shane Hardwick: 
Without sounding incredibly callous? I think that, and this is just my humble opinion, I think that the cartels realized that they were killing off their loyal customers and I think they switched to something that’s equally as addictive, but the people are still going to be around to throw more money at it.

(18:43) Phil Lofton: 
Can I ask you, this is another one that wasn’t really on our list, but I think it’s relevant given the conversational arc. How do you think we got here?

(18:53) Shane Hardwick:     
Oh man, that’s a good question. I don’t know. I know back in the seventies, from what I’ve heard, it came back from Southeast Asia. Yeah. This go around. I have no idea. I don’t know. There’s a million things you can pin it on, but I really, I’m not going to say it’s because we’re over prescribed. I’m not going to say that. I don’t know. I mean, is it, is it culture? Is it the en vogue thing to do that? I don’t know.

(19:29) Phil Lofton:
It seems like that a lot of the work that you do, it’s about fixing a brokenness in a community that is associated with the overuse of addicting substances. How do you think that we got to the point where that is what our communities are turning to?

(19:49) Shane Hardwick:
It’s a good question and I don’t know, is it hopelessness? Is it that, you know, is it the loneliness component to it? I don’t know. Is it chicken or the egg theory? We have our, our area, we see a lot of folks that were once housewives on the north side that kind of leave everything. We’ve got a couple of those, they leave everything and then they go where the drugs are at. So, you know, we have people that five, 10 years ago were living it up on the north side and living normal lives and now they’re, you know, they’re, they’re out walking the streets and we had a woman that actually flagged us down, showed us the mugshot photo and said she’s wanted, please find her because we know she’ll be safe in jail.

(20:57) Phil Lofton:
So what’s next? If we’re basically out of the worst of it, the absolutely threatening part of it. What’s next? What do we need on the EMT perspective?

(20:59) Shane Hardwick:
I don’t know, because, because I, I think what we see a lot of is you’re exchanging or you’re trading one addiction for the next. And I’ll give you a perfect example. Spice. Synthetic marijuana that in our neighborhood, they’re spraying oven cleaner and bug killer. And it enhances the effects of this synthetic marijuana. We encountered a gentleman one day who was schizophrenic, unmedicated, and he was self medicating with synthetic bug sprayed marijuana. And it was, it was frightening because I said, man, why do you smoke this stuff? And he said, well, because I hear voices all the time and they’re usually telling him pretty unpleasant things. But when he smokes spice, it changes the sound. It’s a more pleasant sound in his head when the voice is talking to him. So I don’t know, I think it’s, they’re usually just trading one addiction for the other. It goes, it goes deeper than just what drug it is, you know, how do we fix that, you know, how do we keep people from not hurting themselves? I don’t know the answer to that.

(22:16) Phil Lofton: 
You are so involved on the front line of this crisis. You are so involved on the rebuilding of communities. What is one or two things that you would want everyone to know about the communities that you’re involved in, about the work that you’re doing about what this crisis is like, that you don’t think that people know or if you think people know, you think maybe they forget.

(22:38) Shane Hardwick: 
Sometimes I’ll tell you what, the neighborhood that we work, there’s a lot of good people, there’s a lot of good people in this neighborhood and it’s very easy to rope and entire community into very few people that are committing x, y, and z crimes. We’re doing x, Y, and z things. Like I said, the number one demographic in our neighborhood are single mothers followed quickly behind senior citizens. Um, but yet we still have, you know, this, this lagging problem with, with crime and crime goes where it’s appropriate. And I can tell you that a fast majority of the people that, that we, that we interact with in the neighborhood are just good people and they’re not drug addicts and they’re not violent criminals.

(23:32) Shane Hardwick:
That’s the one thing that I would say if you’re, if you’re talking about the 10,000 foot view of the neighborhood, is that there’s a lot of good stuff going on in this neighborhood and there’s a lot of people that care. We recently partnered with, Partners In Housing. We recently partnered with a charity that came in and built some new homes in the neighborhood and they couldn’t figure out how to zone it properly because it had been since the 1960’s that anyone had built a residential home in this neighborhood. So, you know, you talk about stemming the tide and changing things in the neighborhood. We’re building new houses and we’re trying to educate children. Shepherd community center has a community center and also has an elementary school and they have kids now from this neighborhood that are in, IU, they’re in Purdue, Notre Dame, Harvard. It’s the empowerment. It’s having people coming into their lives and saying, you know what, you can do anything you want to do. Your life is not defined by just this block.

(24:40) Phil Lofton:
Before we wrap things up, Shane shared something with me.

(24:44) Shane Hardwick:
I’m the luckiest guy I could possibly be. I’ve got a job that I cannot wait to get, to get to work in the morning and do some of the stuff that we do. And it’s always fun to get out first thing in the morning before the school bus runs and see the kids on the sidewalk and, and, um, it kinda reminds you like what we’re here to do. And we delve in some pretty dark places sometimes, but at the end of the day, I think we’re kind of doing the greater good when it comes to just bringing something to the neighborhood that says, we care about you.

(25:22) Phil Lofton:
We know that our social factors can impact our health. We heard that last episode with Shaun. We know that health systems aren’t always designed to treat people’s total needs. We heard that with Andy Chambers and with Ashley Overley and we know from our talk with Carolina and Deb Litzelman that the best possible way to help people effectively is to give them care in a way that makes them feel safe and comfortable. I think about all of that is Shane and I wrap up and I think about the statistics that led Shepherd Community to start the Shalom project. Then I think about the man in the ambulance and I think that if we’ve got people like Shane looking out for our communities, we might be okay in the end.

(26:02) Phil Lofton: 
Music this episode was from Everlone and Broke for Free. Our theme and additional musical cues in this episode were written and performed, as always, by the Apophatic Five.

The Problem is produced at studio 132 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at theproblem.regenstrief.org.

The Problem is written, hosted, edited and produced by me, Phil Lofton with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and Social Media Marketing is done by Jen Walker.