Season 2

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.

Season 2, Episode 2: Alzheimer’s in Our Communities: Fitness, Friends, and Policy

Transcript

Mindi Winnie

So, I finished out my freshman year of college and at the time I was working at my favorite little restaurant in my home town, called Turkeyville, USA. And you wouldn’t believe it but all they serve is turkey, but turkey of every form so you got turkey taco. Oh my gosh, they would be so stoked if they heard something like this. It’s got a dinner theater. And I think that’s really where I started to fall in love with older adults because I served them.

But I think my mom had brought my aunt and my sister out, and my grandma out to visit me while I was working one day at Turkeyville. And they went shopping around in the gift shop and my grandma spotted this – okay, it was, it’s not a Beanie Baby, but it was one of those TY animals where they’ve got the big eyes – so at first my mom kind of had a hard time like, allowing her to get the stuffed animal or play with it, because again, here she is wheeling around this older lady who’s just googoo-gaga over this little stuffed animal unicorn.

But then my mom just, you know, saw the joy in her eyes and was just like, I gotta get it for her. I just have two of most beautiful pictures of her with the baby. It’s like I none of us had seen that smile on her face and years.

 

Phil Lofton

Imagine you want to go to the store. Maybe you need something small. For most of us, it’s simple. We grab our keys, get in the car, we drive to the store. You walk in, grab the new tube of toothpaste, or what have you, you pay, and you drive home, and that’s that.

We know where to turn, we know the landmarks, the stores and signs along the way. We know where to find the toothpaste. We know how to use the credit card reader or count our cash, and we know a thousand other steps along the way that are all a critical part of the mission. 

Life with Alzheimer’s is different. Any one of those steps along the way can become immensely difficult or impossible once Alzheimer’s and dementia are in the mix, and often, city planners don’t design our infrastructure, our services or our policies in a way that takes this into account. And even if we did, there’s a stigma that follows individuals with Alzheimer’s in our communities that can be difficult to erase.

In this episode, we’ll look at how cities and communities are structured in a way that can – unintentionally – be difficult, and sometimes even harmful to those with Alzheimer’s and dementia. We’ll also hear from scientists and community leaders about ways we can make a difference.

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

[THEME]

Think about how your hometown looked when you were a child.

The way buildings looked, the familiar sights, the places you used to spend time as a kid, the landmarks that helped you find your way.

As time passes, those landmarks, those familiarities change. And that’s not the worst thing! Cities grow, new tenants take over old buildings, it’s progress. 

But for older adults with Alzheimer’s disease and dementia, the changing face of their city can lead to difficulty navigating day to day life, or even confusion or wandering.

According to the Alzheimer’s Association, 70% of individuals who are living with Alzheimer’s live in the community setting – which is to say that they live in their home. A quarter of those individuals live alone.

But even if those individuals live with family who can help them navigate the environment, there can still be challenges.

I spoke with Regenstrief Scientist NiCole Keith about these challenges. When it comes to fitness and getting communities more engaged in health, she’s a top expert. She’s the Associate Dean of Faculty Affairs, Indiana University School of Health & Human Sciences, the Vice President of the National Physical Activity Plan Alliance, and the President-Elect of the American College of Sports Medicine. Over the last fifteen years, her PARCS program has helped thousands of Hoosiers become more active. 

 

 

NiCole Keith

So, it really depends on the level of cognitive impairment. There are some older adults who just should not be out without a caregiver. But I said “without a caregiver” because it’s important for everyone, regardless of cognitive status to be physically active. For those people who have mild cognitive impairment or early stages of dementia and are still out and about, uh, keeping the environment familiar is really important. And so, as buildings are going up that used to not be there, um, it could be really disorienting, or if the street configuration changes, it could be very disorienting to somebody who has been living in the same place for years. And so really making the signs so that they’re easily easy to read, um, that they’re obvious so that people know who they are, where they are and where they’re going and that places can remain familiar.

Phil Lofton
Does lighting and pavement evenness, like, play an even bigger role in those issues?

 NiCole Keith

Yeah, it’s really important. And so having adequate streetlights, um, having, um, a barrier between the traffic and the pedestrian, um, path is also really important. And so keeping those in mind, but also, you know, the levelness of the sidewalk because even for people who, um, are, have, their cognitive function is completely intact, there might be a problem with vision or balance, and if the sidewalks are in disrepair, they may not notice it and that’s a falling or a tripping hazard.

 

Phil Lofton

And of course, there are kind people out there who might go out of their way to help navigate for those who are lost.

But there’s a stigma that can follow people with Alzheimer’s disease and dementia. It can show up in all sorts of unexpected interactions – a sideways look from a server, an impatient response from a cashier – and it’s often rooted in a lack of understanding about Alzheimer’s and dementia, and the difficulties that they can bring to patients’ lives. 

What’s more, patients and caregivers can internalize this stigma, which can lead to isolation.

Here’s Dan Bateman, a psychiatrist from Regenstrief who specializes in senior health, on innovative environmental cues for seniors, and how small, positive interactions can make a difference in improving seniors’ interactions with their space. 

 

Dan Bateman

I think having an awareness is probably the biggest thing. Um, I think other community programs that can identify the person who has dementia but not in a stigmatizing way. For example, there’s an Alzheimer’s Association program that has a wristband. It’s not a GPS device or anything like that, but it’s more of a jewelry. Like you would have an emergency [bracelet], if you had a cardiac condition, you would wear similar bracelet, right? But for the heart condition, this registers the person with emergency services in Indianapolis, in surrounding counties, and also registers them nationally. So if this person gets lost, and someone notices this thing, this bracelet on their arm and they see this confused person, then they could then realize the person has Alzheimer’s disease, call the phone number and then the person’s located.

 There’s other techniques to help people with Alzheimer’s disease stay safe. I think other things that that can be helpful is, you know, I’ve seen some really ingenious things from patients themselves. One of my patients has her own business card that describes her name and a favorite Bible verse, but also describes her illness a little bit in terms of what she has so that there’s no judgment there. And so that, you know, at a restaurant she might hand this card out and then the waiter or waitress knows that, um, that this is the condition that she has. So if she asks for ketchup five times, and hopefully it’s a good waitress and it’s not that she’s having to ask five times about that delivery, but that they’ll understand what’s going on.

  

Phil Lofton

In Indiana, there’s an initiative underway, being led by Dementia Friends Indiana, that could lead to a better understanding – across industries – of what Alzheimer’s is, and how to create more welcoming spaces for those who live with it.

I spoke with Dustin Ziegler, of CICOA, Central Indiana’s Area Agency on Aging, and Dementia Friends, to learn more about the program.

 

Dustin Ziegler
So Dementia Friends Indiana is this rapidly growing movement that we’re so proud of and so excited about. It’s about two years old. We started this in August, 2017. In doing so when we adopted it and CICOA became the state administrator for the program, it made Indiana at the time, the 10th state in the United States to adopt a statewide plan for a dementia friendly state. You flash forward those two years, we have come just light years ahead with the movement and the things that we’ve been able to do with it. And to me, I think that’s a reflection of how overdue it is and how much people have been wanting and needing something like this to come around. And really at the end of the day it’s a social movement, to increase that awareness and education about the condition, reduce the stigma, and make our communities more conducive and welcoming for those who are living with it.

 

 

Phil Lofton

People who participate in dementia friends attend a brief in-person session, or watch an online video session.

They participate in exercises that help them better understand the difficulties of life with dementia.

In one exercise, participants list every step of a seemingly simple activity, such as brushing their teeth, to emphasize the numerous steps involved in even the most basic tasks.

But the initiative is about more than just understanding the impact dementia has on tasks. 

 

Phil Lofton
So what makes dementia friends so powerful? Why is it the model that you all have chosen to push in this state?

Dustin Ziegler

We think it’s just a whole new approach. Dementia has been identified as the most feared disease in our country, it surpassed cancer a while ago. And that’s not just for older adults. That’s people surveyed of all ages. They fear it more than anything else. And they fear it because of the stigma, because they don’t understand the condition and they have these perceptions about it. Dementia, friends, Indiana basically looks to disrupt all that and bring the facts to the table about what this, what this disease is and the realistic components of, yeah, you may have it, but there’s still a lot of good life to live. You’re still a person who can engage and contribute in our communities. And you’re absolutely not alone, it’s the most prevalent condition, it’s only getting bigger and bigger. And so we look to at Dementia Friends Indiana, to bring a positive, optimistic spin on the condition.

And that’s not to downplay the effects of it because it’s bad. It’s a dreadful disease. But that doesn’t mean that life is over. And there’s a lot we can do to accommodate and to be more welcoming and conducive for those who are experiencing it. And the more we talk about it and the more we show these examples of these great stories about how people continue to remain engaged in their communities and enjoying life, sometimes more than ever with the condition, that gives people, not just hope, but a tangible example that, okay, yeah, they have dementia, but who cares? It’s a brain condition. They have, they have a, a disease just like I have hypertension or diabetes. We don’t define somebody by their disease in those cases. So why would we define them in this case too? And because of the prevalence and the impact that the condition is having that just brings, has brought a lot of optimism and relief to our communities. We’ve never seen a condition or a movement rally our communities like we’ve seen with this. And I think that’s a reflection of just how many people are affected by it.

Phil Lofton

I want to talk a little bit about like what actually makes dementia friends, dementia friends, because dementia friends is not “come to this two hour seminar and then you will do these eight things in all interactions with all people with dementia and that will somehow make this better”, right? It’s a little bit different from that. What exactly is it?

Dustin Ziegler
So it’s coming back to a philosophy really I would say. At the end of the day it really comes down to two things. The first thing is just education and understanding about what the condition is. And a second part is to take action to create awareness and do something about it so that more people are educated about it, steps are taken to reduce the stigma and more people are connected to the movement. That’s really the core of it. And so when you become a dementia friend, that’s the beginning. You don’t just go to an info session. “I became a dementia friend and now I’m done”. Now what are you going to do about it? And that’s really important, uh, because, because it is a social movement, even if you are somebody who is really, um, familiar with the condition or you’re an expert in the field, um, that it still means that you’re committing that I’m going to do something about it to get more people online level and, and to, and to make a difference.

Phil Lofton
So the way that a dementia friends lifestyle can be sort of led by a waitress is different from the way that a banker might lead. It is different from the way that a first responder would lead it, but it’s about creating a whole community of people that have a better understanding of the disease and then go out, take action to keep people feeling included, to not stigmatize people through their actions, through their businesses, what have you.

Dustin Ziegler

Yeah, you nailed it. Nice. Yeah. I mean, that’s the foundation for it. So, you know, what does a banker have in common with a first responder, with a museum professional, with a teacher, you know, et cetera, et cetera? What we all have in common is that this disease affects every single community sector. And so, a banker may not take the same approach as a first responder, but the idea is the foundation of understanding and the welcomeness of the condition. You apply that to whatever your specialty is and, you can change somebody’s life with it and make it more welcoming and conducive. There’s examples in every industry that you can apply. And, and again, it’s, it’s not necessarily like you have to spend $1 million to do it. For example, if a restaurant just took certain steps to maybe create an area in the restaurant that’s a little quieter, maybe closer to the restrooms, maybe they have a process that if they know somebody with dementia is in that party, that they provide a simpler menu, that they have like a waiter or waitress who has the education and understanding of the condition to be patient and how to communicate those things alone.

They don’t cost very much if anything, but it’s could make the whole difference with the experience with somebody who now if I moved my loved one, I can say, you know what, I can still go out to my restaurant. All I wanted to have is a good experience and a good meal. My loved one and I can continue to do that just because of these little, um, basic modifications and, and just different ways of thinking in our communities.

Phil Lofton
It reminds me a lot of what I’ve heard from my friends who are parents of children with sensory issues.

Mindi Winnie

Yep. This is not specific to dementia or you know, Alzheimer’s disease, other related dementias. I mean, this applies to nearly everything.

Phil Lofton

And when you as a business start to say, “Hey, how can we include this population right?” Then you are cued into this population whose point of care is not that different.

 

Phil Lofton

In the very near future, thanks to the joint efforts of Dementia Friends Indiana and the Indiana Family and Social Services Administration, all first responders in the state of Indiana will be trained as dementia friends. That’s a huge step forward for several reasons.

Imagine a police officer responding to a shoplifting call at a convenience store. They show up to the store, and find an older person who, according to the store’s owner, was trying to walk out with unpaid merchandise.

The older person is agitated. Understandably! They’re confused – maybe they don’t even remember grabbing the merchandise in the first place – and they’re being told they’re in trouble by a police officer and someone they’ve likely never met.

And there’s most definitely a right way and a wrong way to deal with the situation. There’s a way to de-escalate. There’s a way to interact with the “perpetrator” in such a way that you can get them in touch with a loved one and get them home safely.

There are other powerful examples to be found of ways the dementia friends philosophy can benefit a variety of first-response scenarios.

These large-scale wins, though, aren’t possible without the efforts of area agencies on aging, like CICOA, state agencies such as the Indiana Family and Social Services, which helped make the expansion of dementia friends possible, and nonprofits such as the Alzheimer’s association. I spoke with Jason Barrett, policy director of the Indiana Chapter of the Alzheimer’s Association about some of their policy goals.

 

Jason Barrett

Our Association the Alzheimer’s Association, collaborates with the CDC to form what’s called the Healthy Brain Initiative and the Healthy Brain Initiative they put out what’s called the public health roadmap. And this is a roadmap, the last one was released last fall, and it’s a roadmap of identifying how Alzheimer’s disease is a public health crisis and what state and local health departments can do to address this public health crisis and a list 25 actions that states can take states and localities can take.

So our association is working with our state government to try to find ways to implement these actions as thoroughly as possible. And they focus on raising awareness of the disease and education with the general public as well as those in the health care profession, making sure that our dementia care workforce is adequately trained, forming partnerships. And then also monitoring and evaluating policies that exist and gathering data to help identify what we can do moving forward what the prevalence of this disease looks like moving forward.

So, this is something that we’re really happy to see come through. We’re excited about taking these steps. And so we’re working with the state agencies who are focused on Alzheimer’s dementia care to make sure they understand the impact of these actions and how we can properly implement and evaluate these actions over time.

If you or anyone you know, has any questions about Alzheimer’s disease, if you’re a caregiver and you need some support, whatever it may be, we have 100% free resources you can reach out to our chapter or a chapter that’s maybe closer to you if Indianapolis or the Indiana chapter, if you live in a state border, we have a 1-800 number that you can call 24 7, that helpline, they are trained staff. So anytime you have any need any question whatsoever, it’s 100%. free resource. And what I do personally with the association is public policy.

We are a volunteer based organization. So with our support groups and education seminars and walk committees, just like those are public policy approaches for advocacy or volunteer focus. So we build a team of volunteers that we take out with us when we meet with our federal members of Congress, with our state members of Congress when we host events centered around policy, and if somebody wants to get involved, they can go to our chapters website, www.alz.org Indiana or if you want to be more specifically focused on advocacy, you can go to alz impact that’s www.alzinpact.org. And you can learn more about our advocacy programs and even register to be a volunteer advocate right there.

 

Phil Lofton

If you’d like to learn more about the work being done by the Alzheimer’s Association, listen to our special case study episode, available now, featuring longer excerpts from my conversation with Jason, as well as the Chapter Executive, Natalie Sutton.

Creating better, more understanding public spaces for patients with Alzheimer’s disease and dementia is a good foundational movement to improve lives.

In our next episode, you’ll hear about an innovative, multi-disciplinary model of care that’s helping improve the quality of life for both patients and caregivers here in central Indiana, all while reducing costs for systems.

Join us 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 Young Elderz.

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, our storyteller this season.

Bonus Material

Listen to a presentation from Dustin Ziegler to the Regenstrief Institute for more on Dementia Friends:

Mindi’s grandma with her stuffed unicorn:

Mindi's grandma with her stuffed unicorn

Season 2, Episode 1: Plaques and Tangles

Transcript

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 health on the societal level.

Every season you’ll hear about a different significant problem, and each episode within that season will feature a different discipline or industry’s 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.

You don’t need a PhD to be affected by these issues, 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 in biomedical informatics, health services, and aging.

Welcome to The Problem.

Phil Lofton:
What’s your first memory of your grandma?

Mindi Winnie:
I mean, I think the thing that’s just most, I don’t know… present in my mind is just my grandmother being at everything. Like, she was my ride to dance classes. She brought me food every single day at dance class. I had my grandparents and especially my grandmother all to myself. So we just had such a unique bond. So I think for me, it was just her being present at everything.

I graduated from college in August of 2009. Excuse me, May of 2013. And then by August of 2013, my grandma had passed away. But at that point, I mean, at the time of my graduation, she was not able to be there. You know, of course, any graduation ceremony is long, but a college graduation…

Near the end, she would just sit in the family room, and then she’d get up and then she’d walk around the house and then she’d sit down for a minute and then start again. I mean, it was just constant pacing and wandering. And so, I mean, there was just no, no way she could have been there. But you know, if she would have been aware that she was missing my college graduation, it would have just killed her.  

Phil Lofton:
The story of cognitive illness goes back quite a long way. The concept of cognitive illness is ancient. For centuries, humans have associated advanced age with mental decline.

But in many ways, the story of this season’s problem really begins in the 19th century with a Bavarian medical student named Alois. (Editor’s Note: Multiple sources informed this segment; however, I highly recommend reading Cipriani’s offering on the topic, linked at the end of this portion). Alois, a charismatic young man, and a fencer, was drawn to diseases of the brain.

After he graduated from medical school in Wurzburg, Germany, Alois left to Frankfurt, to begin his career in the city’s asylum. Emil Kraepelin, a famed psychiatrist in the region, took note of Alois’ abilities, and decided to mentor the young doctor.

Over the next few years, the two worked together on a variety of cases involving senility in older patients, including a posthumous examination of the brain of one of Alois’ patients, Auguste Dieter.

Frau Dieter had shown a loss of short-term memory and symptoms beyond those of his usual patients, including hallucinations, disruptive behaviors, and delusions. Alois became fascinated with determining what had caused her decline.

In the course of his work in Kraepelin’s lab, Alois discovered something unique about Frau Dieter’s brain, two physiological symptoms that would come to define her disease: amyloid plaques and neurofibrillary tangles, both of which disrupt the brain’s function.

Alois published a paper on his findings, calling Frau Dieter’s condition presenile
dementia
, though another name for her condition would emerge three years
later in a paper from Kraepelin.

He would name the disease — a disease that now affects nearly 6 million Americans and their 16 million caregivers — after the surname of his mentee, Alois.

Alzheimer’s disease.

Welcome back to a new season of The Problem. I’m your host, Phil Lofton.

[THEME]

Alzheimer’s disease has, over the course of the last several decades, become a major focus of discussion on healthcare. But what, exactly, makes Alzheimer’s unique from other related diseases like dementia?

Here’s Dr. Chris Callahan, a Regenstrief scientist, the former and founding director of the IU Center for Aging Research at Regenstrief, professor of medicine at the Indiana University School of Medicine, and Chief Research and Development Officer for Eskenazi Health.

Chris Callahan:
A good way to think about this is that dementia is a very broad category, like we have trees, but we have many different kinds of trees. So you could accurately call a tree a tree, but you could also call it an oak tree or an elm tree. And so there are different types of dementia. Dementia means that you’ve had a fall in your cognitive functioning that’s severe enough to interfere with your social functioning. So people sometimes will be concerned that they can’t find their keys or their glasses or they forget somebody in a social context, but those kinds of things happen to us all the time.

When we get older, we get more concerned that it might be evidence of dementia. But we’re talking about impairments in your memory or other parts of your brain function that impair your ability to take care of yourself and do the kind of social roles that
you’ve always done. So Alzheimer’s disease tends to present initially as difficulty with short term memory. That’s the hallmark of it. But even that by itself isn’t enough to label it Alzheimer’s disease. You need to have impairment in other areas like your ability to plan or your ability to control things in a visual spatial context. Your ability to use language and recall words or name objects, and then also, we sometimes have concerns with folks’ judgment and reason.

Depending on which of those areas are impaired first and the most, that helps us decide what type of dementia that person might have. Now, having said that, when you reach an older age, say 75 and older and you develop dementia, it’s most likely going to be Alzheimer’s disease is at least part of the explanation. But it also happens that we have mixed dementia very commonly too, so you might have a vascular dementia due to poor circulation in your brain. And that’s mixed with an Alzheimer’s disease or an Alzheimer’s disease mixed with any other kind of dementia. So that is common for you to have more than one pathology in your brain.

Phil Lofton:
And that’s where we get the phrase Alzheimer’s disease and related dementia from?

Chris Callahan:
That’s exactly right.

Phil Lofton:
With the aging baby boomer generation now almost entirely entered into retirement, the prevalence of Alzheimer’s disease is only going to continue to increase.

In fact, scientists are now estimating that by 2050, there will be more than 14 million Americans living with Alzheimer’s disease and there will likely be 42 million Americans providing unpaid care to these patients.

Alzheimer’s affects every aspect of a person’s life, as well as the lives of those who provide them care, and those in their community.

The search for a cure has been unsuccessful, but even if scientists were to find one today, there would still be millions of families needing support as they navigate life with cognitive decline.

It’s an issue of policy and pharmacy, infrastructure and informatics, medicine and marketing.

It’s an issue that, more and more, will become one of the biggest health challenges of our time.

This season, we’ll be looking at Alzheimer’s disease and related dementia. Through discussions with scientists, policy makers, and those most affected by the disease, The Problem will explore the impact that Alzheimer’s has on the lives of patients and caregivers, where the current research stands, and ways you might be able to reduce your risks.

The season will start with a short arc of four episodes on life with Alzheimer’s, focusing on the community perspective, the health systems perspective, the caregiver, and finally, the patient. After that, there will be one episode on screening and diagnosis for
Alzheimer’s, ways to reduce your risks — diet and exercise, pharmaceuticals that might cause cognitive decline, and an episode on some possible causes of Alzheimer’s and dementia that might surprise you.

As you might imagine, it’s hard to talk about societal-level changes to diet and exercise behaviors without talking about public policy, just like how it’s difficult to talk about the
effect of pharmaceuticals on cognitive health without talking about the way that health systems operate and how medications are prescribed in the first place.

While there isn’t yet a cure, thanks to the work of countless specialists, volunteers, lobbyists, friends, families and patients with Alzheimer’s, we in research and healthcare have learned so much about ways to improve the lives of those living with this condition, and many are hard at work to learn even more.

Join us next time, as we discuss how to make beneficial policies and communities that are safer for individuals with Alzheimer’s, 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 Bert Flooterman.

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.