Transcript

Phil:
how did life change for you once there was a diagnosis of a memory problems for your grandma?

Mindi Winnie:
Yeah. So I mean, again, she was a babysitter, ran a daycare out of her home. So she had to end up closing her daycare and um, you know, I mean it was, you look back now and it’s like, “Well, the timing was kind of right,” because here my grandfather was getting ready to retire and was now going to be home all the time with her. But, um, that was just it. I mean, you really couldn’t, you just didn’t trust her to be alone anymore.

I think that was the biggest thing that really changed was the family members coming by and just feeling, you know, they would come by but they wouldn’t step foot in the house, which is just so crazy to me. But even those friends that, I mean, if it wasn’t a daily basis they saw each other at least on a weekly basis and even they stopped really coming around.

This friend, her and her husband and her husband had had passed away. Um, but I mean as a couple my grandparents and then this couple, they did everything together from a young age. I mean, I remember just always being around this family. And so I think, you know, just like I was talking about earlier of her just, you know, she wasn’t afraid to come over and yes, she would sit there and talk to her, but she didn’t expect a response from my grandmother. She just sat there and rubbed her hand and just, you know, soothed her and just made her feel comfortable.

She really was a saint in my eyes.

Phil:
Welcome to the Season Finale of The Problem.

I’m your host, Phil Lofton.

[Theme]

Nothing about Alzheimer’s disease or dementia is simple or clean.

When it enters our lives, it usually enters like a hurricane. Sometimes we see the warning signs of the approaching storm. Signs that we laugh or shrug off as age, or run of the mill forgetfulness.

Then the warnings build. The disruptions to life, the confusion, all of it starts to stack until something undeniable happens and we can’t pretend that it’s anything else.

We go to the doctor, sit around the table, and, whether as patients or caregivers, we process the diagnosis.

Then, life goes on. And it is hard.

Here’s Dan Bateman, Regenstrief scientist and geriatric psychologist, on the impact that symptoms like wandering, agitation, and confusion, have on caregivers and patients.

Dan Bateman:
Well, the impact’s huge. They’re also known as neuropsychiatric symptoms of dementia. Some of the naming changes back and forth depending on which group you’re talking to. But they have a huge impact on people. It leads to increased caregiver stress. People who have these, these symptoms, people with dementia, they are institutionalized earlier, getting a nursing home placement earlier. They have a more severe progression of illness. They have a higher rate of mortality. Their caregivers have higher rates of caregiver stress. There’s also a huge financial cost that’s associated with behavioral symptoms of dementia.

Phil:
Older adults living with dementia are at much higher risk for abuse and exploitation.

Their caregivers are more likely to develop depression, anxiety, and chronic conditions. They often have to leave the workforce earlier than they’d prefer. In fact, among women who care for a loved one with Alzheimer’s, one in six believe they’ve been penalized at work specifically because of caregiving-related needs.

Both the patient and the caregiver find themselves in situations in public that can be difficult to explain, or embarrassing. as a society we don’t always have the shared understanding of exactly how dementia works, and how we react to these situations can often lack empathy.

What’s more, models of care or resources that could provide needed support for caregivers aren’t always available or accessible. .

But.

Those models of care exist. And in places where they’re implemented, they make a big difference.

Here’s Malaz Boustani, Regenstrief scientist and founding director of the Sandra Eskenazi Center for Brain Care Innovation, on the effects of the collaborative care model, which  we talked about in episode 3, on patient and caregiver lives.

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’s 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.

Phil:
And beyond the reach of health systems, there are groups of people committed to making life better for folks with Alzheimer’s and their Caregivers.

Groups like the Alzheimer’s Association, CICOA, and Dementia Friends, who use empathy, compassion and education as tools to create change.

Here’s a brief excerpt from my talk with Dustin Ziegler, of Dementia Friends and CICOA, on his organizations’ strategy.

Phil:
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:
There are also organization’s like Rick Cobb’s Songshape Chorus, that keep folks with Alzheimer’s and their caregivers active in community, and engaged with arts that enrich us as much as them. Here’s a brief clip from my talk with him.

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.

Phil Lofton:
To talk again about what you were saying about the inherent isolation that this disease has both on the patients and the caregivers.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. Yeah.

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.

Phil:
Here’s the late Mary Austrom of the Indiana University School of Medicine and the Indiana Alzheimer Disease Center, on our search for a cure and the need for compassion.

Mary Austrom:
While we’re so hopeful and we’re looking for that, um, cure or disease-altering treatment, that’s the goal. You know, even if we found it tomorrow, there’s like five and a half million patients affected today that that may, that new cure may not work for. So we need to care for patients. So there’s a real distinction I think between curing and caring and even if we can’t cure it today, we still have to care. So I think that’s been my philosophy all along and that, you know, our frail and our elderly are most of deserving of our care or compassionate care. And those, those among them who have, you know, lost their cognitive ability and lost their patience with others, they’re probably in most need of our patience, of our care and compassion.

Phil:
Hold two truths in your hand. Two truths that seem mutually exclusive, and impossible to hold together.

One truth is hard to face. The truth that we have no cure for Alzheimer’s disease. That it’s a serious disease that changes your life, and that while we work hard to understand the sickness, we’ve been saying for decades that the cure is just over a hill that seems to grow and warp to cruelly obscure a hope.

But despite that, life with Alzheimer’s is still life. A spouse with Alzheimer’s is still a spouse. A parent with Alzheimer’s is still a parent. The other is just as hard to believe, because hope is always a dim candle in a dark room.

The other truth is that dementias are not death sentences. Our personhood and spirit can’t possibly be reduced by the loss of our memory or by a diminished ability to perform complex tasks. There is still beauty in life, there is still a need to belong, and much to contribute back to communities for people with Alzheimer’s.

Alzheimer’s is an immensely complicated issue. We covered a lot of ground this season, looking at the perspectives of cities, health systems, caregivers and patients.

We looked at the diagnostic process, and how that potentially devastating news is delivered.

In our last three episodes, we talked about ways to reduce risk of dementia, and in our several bonus episodes, we highlighted organizations or people around Indiana who are making a difference in changing the world for the better.

But there were a lot of aspects of Alzheimer’s that we didn’t touch this season, things like drug development and testing

If you’re interested in some of those topics, visit this episode’s page at theproblem.regenstrief.org. You can find some resources there to learn more about these areas.

We’ll be back sooner rather than later, so keep an ear out on Regenstrief’s social media channels and sign up for our newsletter at regenstrief.org to hear announcements about our next season.

Until then, I want to end the season with some thoughts from Mindi Winnie, our caregiver storyteller.

Mindi Winnie:
When I think about Alzheimer’s and dementia, I’m might be one of the few, but I’m, I’m just so hopeful and it’s not because of a pill or a cure or a treatment. I might be bold in saying this, but I don’t know that we’ll ever find that in our lifetime. But what I do know is I’m just so hopeful for this opportunity to educate people and to just, again, attack the stigma, if anything else. I mean, that’s, at the end of the day, what this movement is trying to do is just to change our perceptions and to just squash the stigma. And again, it’s not just dementia, it’s not just mental health. I mean, there’s stigma around nearly everything that’s negative in our eyes, you know? And so just to be able to, to work through that and to release that, I think that alone will just shift this whole condition so much in the way we care for these people.

So, I mean, I think Alzheimer’s, I think dementia, I think it, you know, yes, it, it takes so much from us, but there’s still, I think the most beautiful thing is that, you know, again, what remains is feelings and emotions. And if people were just aware of that, how different things should or could be just how much more mindful we could be. And just again, just to have compassion for one another and just to, you know, we’re not all gonna be in this position. We’re not all going to witness this first hand. Many of us will, but there’s a lot of people who won’t, you know? And so it just, you just never know what people are going through and just to just love without any borders.

I’m Mindi Winnie and I am a caregiver.

Phil:
Music this episode was from AA Alto, Blue Dot Sessions, Everlone, and Ketsa. Our theme and additional musical cues were written and performed, as always, by an anonymous man in an orange coat.

This season is dedicated to Dr. Mary Guerriero Austrom, who fought to make the world a more equitable and just place. May her memory be a blessing and a motivation.

Bonus Material

Learn how new drugs for Alzheimer’s are developed and tested:

Learn about new drug therapies being developed at Indiana University School of Medicine:

Learn about powerful new imaging tech that will help Indiana University scientists break new ground in Alzheimer’s research:

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