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

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