Season 2

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.

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.