Understanding Patient Perspectives with Carrie Shaw

Show Notes

This week, we explore caregiver experiences with older adults facing neuropsychiatric symptoms (NPS). Joining us is Carrie Shaw, founder of Embodied Labs, a revolutionary medical training platform that prioritizes patient perspectives. Informed by her caregiving experiences, Carrie offers profound insights into the world of NPS patients through Embodied Labs’ immersive tools.

Episode Transcript

Katrin Warner-Perez:

Hi everyone. Welcome to This Is Growing Old, the podcast all about the common human experience of aging. My name is Katrin Warner-Perez, and I’m the health programs manager here at the Alliance.

Have you ever wondered what walking a mile in someone else’s shoes was like? For clinicians and caregivers, seeing the world through the lens of their patients could be lifesaving. For those living with neuropsychiatric symptoms, also known as NPS, simply feeling seen could be liberating. Joining us today is health educator, advocate, and founder of Embodied Labs, Carrie Shaw. Carrie is an absolute visionary. Informed by her experiences as a caregiver, her groundbreaking approach to medical training places the patient’s perspectives at the Center. Embodied Lab’s immersive platform gives caretakers powerful insight into the lives of those living with NPS. Carrie, thank you so much for joining us today.

Last summer, you shared with us your experience caring for your mother who had been diagnosed with early onset Alzheimer’s. How has that shaped your work as an advocate for those with Alzheimer’s and related dementias?

Carrie Shaw:

When my mom was diagnosed with early-onset Alzheimer’s, it was at a time in my life where I was in my late teens starting college. And then when I became part of her care journey, I was in my 20s just getting started with my own career goals, and doing that in parallel to being a family caregiver. And for a while, even her primary caregiver when I moved in to live with her and my dad when she was in later stages of her progression with early onset Alzheimer’s. And so, I think being so young, given that hers was early- onset, both myself and her, it opened my eyes to what aging means at an earlier time than would’ve maybe been natural. And I think a silver lining for me is that I realized we’re all aging and Alzheimer’s disease, it has a huge prevalence in our country and the world.

And working with my mom’s care team as her disease progressed, made me realize that being a caregiver is a role that all of us will play at some point in our life. And when it comes to being a professional caregiver like a home health aide or a CNA, it gave me just so much respect for how important this work is. And it’s made me want to make my life work, be involved in spreading that kind of awareness that we’re all aging, we’re all going to be a caregiver some point. And for those that are our caregiving workforce, this is a real need here in the US and globally that we have to be looking at now so that we age into a world that we all want to be living the best quality of life that we can.

Katrin Warner-Perez:

I love that. And that’s a fantastic point about us all being a caregiver at some point. And that being said, what were some of the challenges that you faced as a caregiver in recognizing and addressing the neuropsychiatric symptoms?

Carrie Shaw:

Yeah, when my mom was diagnosed with Alzheimer’s, looking back, she had signs of this disease that started years before she even started trying to seek a diagnosis. And there was so much along that journey that felt like a surprise to me. Like we were learning as we went. And the neuropsychiatric symptoms really are present in different ways or early, middle, and late stages of the disease, they were hard to internalize. It’s like I think I hear Alzheimer’s disease and still today will think, okay, well, that’s a disease about memory loss. But early on in her Alzheimer’s journey, looking back, I remember she had depression and some suicidal thoughts or some confusion that I think were part of her neuropsychiatric symptoms.

And as she moved into the middle stages of Alzheimer’s where she still knew that she was living in her home with her kids and her family knew who we were, she had a lot of challenges with just being disoriented or dealing with anxiety and things that were early signs of what became more like psychosis

and very, very challenging to deal with symptoms in her later stages. There’s so much more to Alzheimer’s disease than just memory loss. And the neuropsychiatric symptoms are hard for us to imagine because there are things that unless we have that disease, we won’t be able to experience and see ourselves. I think that’s why one of the reasons I wanted to build my company today was to help it be easier to remember than to have to imagine something that’s hard to understand.

Katrin Warner-Perez:

Absolutely. Yeah. To your point, it really helps you understand the lived experiences that each patient is going through. That’s incredible. What makes the virtual reality component such a powerful tool for understanding the challenges of NPS and how is Embodied Labs applying this technology to examining other conditions?

Carrie Shaw:

Yeah, great question. So, when I left home after caregiving for my mom in her later stages as a primary caregiver, I went to pursue master’s of science in this field called medical visualization. And so, it’s the field that started out as the people that drew anatomy and textbooks, and has evolved with technology to say, how do we visualize human health and best understand it using storytelling, visual communication? And so, my research thesis and also really just my mom was still alive when I was in grad school. And I almost as a therapy, wanted to be able to visualize in an accurate way what her lived experience was using this framework of medical visualization that says, how do we interview people that are part of this story and narrative?

The technology, virtual reality at the time, back in 2016, for 2014 to ’16, it wasn’t even a commercially available product yet. And it’s something that I learned about from, who’s now my co founder, Tom Lee, he was in a class with me. And I was explaining to him what I wanted to do and I didn’t really have a path for how I would do it. And he said, “Well, have you thought about how you could tell a story through a first person perspective and using, in this case, the virtual reality headset, you could actually put that on and embody someone’s lived experience.” And I think we’ve used simulation based training in a lot of ways for decades. So, that part of it isn’t new from how we train our nurses and doctors today to how we’ve trained our military. We know that when we put ourselves in a experience, we can learn from it and add to our own skill set. So, my goal is to say how do we now take what has become, as we know today, a commercially available product that is still, I think early in the market.

And in fact, we don’t call ourselves a VR company. We actually can deliver what we do in other ways. It’s more about shared first person perspectives with immersion as the way we see through the eyes of others and embodiment, how we actually can say to our minds what we’re experiencing firsthand, is our lived experience too, that we can learn from and apply in an actionable way to care. Virtual reality is one medium that is in that shared immersive category that lets us really, I think, understand, put ourselves in a live action film where we’re also using our own hands projected as another to be an age, or a gender, or a race, or having different kinds of conditions in our lives. We can experience those in a way unlike any other kind of technology or tool in order to really, really get at the heart of these things that are just hard to imagine. And if we can remember them, then how does that empower us to be the best caregivers, and even best carers for our own health that we can?

Katrin Warner-Perez:

That’s fantastic. And that is a great point. I actually, I did go through one of your trainings and I did not use virtual reality headset. I used the computer, I watched it on my laptop, and it was incredibly impactful. I had actually very visceral emotional reaction to it, and it has still stuck with me to this day. So, it’s a great point that you don’t just need to rely on that to have an impact. That being said, with the immersive training and the immersive experience of VR, how has the reception been from caretakers who have experienced it?

Carrie Shaw:

Yeah, I mean, it’s been such a incredible journey to build Embodied Labs over the last seven years. And I think today we work with, I would say three kinds of organizations. We work with academic training programs where we have students, the incoming workforce using Embodied Labs as part of their healthcare Allied Health Sciences training. We also work with the government. So, we’re in VA Medical Centers as a staff training program. And we’re also in health and human service departments like in California, and Colorado, and Arkansas at the state level where we are part of their workforce training. And not only for their staff and their case managers, but also these government stakeholders have integrated Embodied Labs into their programming for supporting family caregivers in their communities through support groups or through the in-home support services, the federal program that trains and certifies family members as caregivers.

And then the third group, we also work with our senior services organizations. So, like senior living or home care organizations that are, again, both training their workforce and a lot of times offering this as a support tool to the customers, the family members of the people that they’re providing care for. And they do it in different ways. So, you experienced on your computer something that was interactive and first person through your browser. That can be something that can be done one-to-one. Or sometimes one of our VA partners holds a Zoom session and they’ll share that experience with sometimes 60 to a 100 family caregivers that sign up. And they’ll do a guided workshop with a trained facilitator that can take them through that lived experience and then guide a discussion to answer questions and say, how does this influence the way that you, as a family member, are needing to be supported in the challenges you’re facing?

And I’ll use one example of this is a woman who was in one of those VA workshop sessions experienced I think the same experience that you did because she was caregiving for her mom who was in later stages of onset Alzheimer’s. And so, this woman was caring for her mom. And after going through the experience, she had so many, the way she described it, aha moments of how she could set up her mom’s living space so that it would support her to feel more calm. Like being well lit, or using music, or things that would help her mom feel less anxious. She told me she had every family member and her mom’s care team go through that experience after she did because it was so impactful for her. And one of the stories she told me was that when her son, so her mom’s… His grandma who had Alzheimer’s, when he went through it, there was a time where his grandma and him were together and she didn’t remember who he was.

And I think she started to basically say, “Who are you?” And when this woman was telling me, I said to my son, “How was that for you?” And he said, “Well, I remembered Beatrice,” which is who you embody in this experience. And he said, “When Beatrice didn’t know who people were with her, she was scared. And I didn’t want to scare grandma. When I asked her if she wanted me to leave, and she said, yes, I left. Because I remembered how Beatrice felt.” And so, I think if we can have that kind of impact in other kinds of, we do more kind of training beyond just where we started with Alzheimer’s disease, and I hope we see that kind of understanding at scale through these kind of tools of virtual and shared immersive experience.

Katrin Warner-Perez:

That is incredible. So, for those not working with you, how can healthcare professionals and caregivers access these trainings?

Carrie Shaw:

So, we are always wanting to have more businesses work with us by signing on to access our platform and our library of shared immersive experiences. So, they can contact us. We have our website and our email there for anyone interested in actually being a subscriber to the platform. So, that’s one direction. I think two, where we have partnerships with some of these government groups. And actually I’ll make a plug for any family caregiver or professional caregiver in California. This year we are one of a handful of awardees from the California Department of Aging where we’re offering Embodied Labs to a 100,000 family caregivers in California, and a subset of direct care workers who can actually get paid by the state for participating. And so, if anyone wants to participate in the California, it’s called the Cal Grows Program. That’s a great way to get involved, whether you’re just a family caregiver, a community member, or a business that wants to try using Embodied Labs without having that upfront cost this year of getting started.

Katrin Warner-Perez:

Incredible. And we will include the Embodied Labs website and everything that you just mentioned in our show notes as well, so that viewers can go and check that out. So, turning to… Oh, sorry. Go ahead.

Carrie Shaw:

One other thing, just back to the program in California this year, we have several partners that have already signed on with us to be bringing this to their communities. So, I’d also highlight each of those partners. And it’s a growing list, but the ones that are already signed on would love to be able to make anyone listening aware of what they do to support caregivers beyond just the work we’re doing at Embodied Labs. They’re some of the most, I think, some of the thought leaders and caregiver support. And they can also be a path to anyone that’s interested in having an embodied experience with our platform specifically.

Katrin Warner-Perez:

Great. Perfect. Turning to our closing questions. When you were a kid, what did you imagine growing older would be?

Carrie Shaw:

Such a great question. Before my mom got diagnosed with Alzheimer’s, I remember I wanted to be everything from an astronaut, to an author, to then a scientist. I had big ambitions about wanting to cure cancer. I was a science fair nerd in middle school and high school. And I think when my mom got sick, I was 19. And it’s taken me now a couple decades to realize health is precious. And it was hard to imagine what growing older would be for a while in that kind of journey with my mom. But now I hope growing older, I can invest in having not just a long life, but a quality of life. A health span, I think, is one of the words I’ve heard for that.

Katrin Warner-Perez:

Yes. Yeah. Our CEO, Sue, often says growing old is not for the weak, but it is a privilege. So, you kind of answered the question, but what do you look forward to most about growing older now?

Carrie Shaw:

I think getting wiser. I feel like there’s so much to learn. And my friends that are in their 70s, and 80s, and 90s, we think of our friendship as sometimes reverse mentorship. So, when I see what they’ve got figured out, I’m like, oh, man. I want to be able to just keep enjoying the world, nature, meeting people, learning new things, seeing different lived experiences, not just through virtual reality, but hopefully through getting to travel or go places where I am experiencing things I haven’t before.

Katrin Warner-Perez:

Well, Carrie, thank you so much for joining us. For everyone listening and watching, if you’re interested in listening to more of our This Is Growing Old podcast, you can find us wherever you get your podcasts. Have a good one.