According to the NIH, an estimated 6.7M Americans 65+ are living with Alzheimer’s dementia. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs. Today, you’ll learn why dementia is not a disease, but a symptom, and what caregivers go through, experience, and need – especially from their managers and workplace colleagues.
I talk with Barbara J. Huelat about what dementia is, how emotional interventions are more effective than cognitive ones, and how to create more healing environments in hospitals and workspaces. You’ll gain empathy for your colleagues who are dementia caregivers, as Barbara shares her personal experience caring for her mother and husband, and she talks about what workplaces can do to better support caregivers in the office to help them continue to perform and do their best work.
To access this episode transcript, please scroll down below.
Key Takeaways:
- Emotional memories are those with our senses – these memories can reach a person with dementia where language or cognitive memories cannot.
- It is critical to prepare your helpers and part-time caregivers if you are away to give everyone the best chance for success, much like having a disaster plan.
- Be flexible, don’t try to change reality, and give information rather than asking questions. You can go far with that, even when there are mistakes and challenges.
“Be understanding of what they’re going through. There’s a very large emotional drain on the person. The caregiver is often considered the second patient as their health risks skyrocket while taking care because it’s long-term chronic stress that doesn’t go away like acute stress.“
— Barbara Huelat
About Barbara J. Hiuelat
Barbara J. Huelat is a prominent Human Centric Healthcare Designer, author, and speaker. She has created healing environments and solved health challenges for more than 300 healthcare organizations and serves as a healing environment consultant to healthcare facilities, product manufacturers, academia, institutions, and the architectural design community. By placing humanity at the core, her pioneering mindset proves that human-centric designs impact healing, improve the human experience, affect health outcomes, and are cost-effective.
Ms. Huelat’s latest work, Taming the Chaos of Dementia: A Caregiver’s Guide to Interventions that Make a Difference, provides a compassionate and insightful guide to those facing the tumultuous journey of dementia, offering solace, support, and practical strategies to navigate this challenging path. Currently, she shares human-centric designs globally via lecturers at international conferences, universities, and organizations and through research collaborations with government agencies and universities, contributing to white papers and research articles. Always fascinated with the beauty of science and the science of design, she believes human-centric design experiences can mitigate human misery.
Connect with Barbara Huelat
Website: barbarahuelat.com
LinkedIn: linkedin.com/in/barbara-huelat-fasid-aahid-edac-89061213
Facebook: facebook.com/barbarajhuelat
Instagram: instagram.com/bhuelat
Book: Taming the Chaos of Dementia: A Caregiver’s Guide to 9 Interventions that Make a Difference
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FULL TRANSCRIPT BELOW:
Welcome to the empathy edge podcast the show that proves why cash flow creativity and compassion are not mutually exclusive. I’m your host Maria Ross. I’m a speaker, author, mom, facilitator and empathy advocate. And here you’ll meet trailblazing leaders and executives, authors and experts who embrace empathy to achieve radical success. We discuss all facets of empathy from trends and research to the future of work to how to heal societal divisions and collaborate more effectively. Our goal is to redefine success and prove that empathy isn’t just good for society, it’s great for business. According to the National Institutes of Health, an estimated 6.7 million Americans aged 65 and older are living with Alzheimer’s dementia today, the number could grow to 13 point 8 million by 2060 barring the development of medical breakthroughs, and that’s just Alzheimer’s related dementia. There are other dementias related to conditions such as Parkinson’s, stroke, and more. Today, you will learn why dementia is not a disease, but a symptom of what can be a number of conditions and what caregivers go through experience and need, especially from their managers and workplace colleagues. Barbara J. Hewlett is a prominent human centric healthcare designer, author and speaker and has created healing environments and solve health challenges for more than 300 health care organizations, and serves as a healing environment consultant to health care facilities, product manufacturers, academia, institutions and the architectural design community by placing humanity at the core for pioneering mindset proves that human centric designs impact healing, improve the human experience, affect health outcomes, and are cost effective. Barbara has written three books including her latest work taming the chaos of dementia, a caregivers guide to interventions that make a difference, which provides a compassionate and insightful guide to those facing the tumultuous journey of dementia, offering solace, support and practical strategies to navigate this challenging path. Currently, she shares human centric designs globally via lectures at international conferences, universities and organizations and through research collaborations with government agencies and universities, contributing to white papers and research articles. Barbara believes that human centric design experiences can mitigate human misery. Today we talk about what dementia is how emotional interventions are more effective than cognitive ones, how to create more healing environments, both in hospitals, workspaces, and how your current workplace environment may be the reason your people don’t want to return to the office, you’ll gain empathy for your colleagues who are Dementia Caregivers, as Barbara shares her personal experience caring for her mother and husband, and what workplaces can do to better support caregivers in the office to help them continue to perform and do their best work. This is an important conversation, take a listen. Welcome Barbara Hewlett to the empathy edge podcast to give us a little bit of insight into dementia care, and the needs of caregivers who are caring for loved ones with dementia. Welcome to the up at the edge podcast. Thank
Barbara Huelat 03:28
you so much. And thank you for inviting me for this afternoon, and I look forward to it.
Maria Ross 03:34
So tell us a little bit about your story. We just heard your bio, how did you even get into this work? And how did you get into the work of being a healing environment consultant and an expert on dementia and caregiving?
Barbara Huelat 03:48
Okay, well, my career has been in architectural design for health care facilities. So for the past 40 Some years I’ve designed health care facilities for hospitals, clinics, and nursing homes and senior living facilities. But then it’s been the relationship of my personal experiences as a caregiver first with my grandmother with vascular dementia, my mom with dementia from Parkinson’s and my late husband who had Alzheimer’s. So with those, I learned a whole different side of caregiving and the environment or feeling space spaces from a very personal side.
Maria Ross 04:34
Wow. And I can’t imagine there are many people who have not been touched by dementia in their families or their circle. I know I had a maternal grandmother that lived with us in her last years. And I actually didn’t know her without dementia as a child. And so, and I didn’t understand it, and I think that’s probably true of a lot of people who are not sure what they’re dealing with? are they dealing with just someone getting older and forgetting things? Or they’re dealing with someone who’s had a brain injury, that I had a brain injury? It impacted short term memory? Or are they dealing with dementia? So can you please share with us? What is the definition of dementia? And how is it different from things like Alzheimer’s?
Barbara Huelat 05:18
Yes. Well, dementia is an overall term for all types of diseases with cognitive impairment. And so yes, it can be from from a stroke and brain injury from diseases like Parkinson’s, and but the biggest cause of dementia is Alzheimer’s disease. That’s what we’re dealing with today. That is the largest cause. But dementia is actually a symptom. It’s not a disease. But it’s a symptom of all of these diseases that they and the symptoms are quite common, regardless of which disease you have. There’s very little bit of differences. Some are actually treatable, but the majority are not correctable.
Maria Ross 06:08
And I don’t think that’s well known that that’s a symptom, not a disease. I know, for example, when I had my brain aneurysm rupture, I thought that a brain aneurysm was an event. But a brain aneurysm is a thing. And only if it ruptures, does it usually cause major issues? So it sounds like dementia is very similar? Where we we use it in terminology as if it is its own diagnoses? Yes, its own disease.
Barbara Huelat 06:35
It’s very common people asked the difference. Well, what’s the difference between dementia and ultimates? Is it the same thing? And no, it’s it is it is part of the disease, but it is not the same thing. And you really can’t, it’s used interchangeably, but it doesn’t work that way. And so when
Maria Ross 06:57
you talk about your new book that not so new now, but it came out last November, taming the chaos of Dementia Caregivers guide to interventions that make a difference, what are caregiver interventions? And why are they necessary? Well,
Barbara Huelat 07:12
it could that’s a great question, thank you. Be intervention is something that a caregiver can do. It’s a positive, actionable item, that something that you can do. We think of most interventions like pharmaceutical or surgical or PT, these are interventions to change outcomes. But there are so many interventions that caregivers can do that don’t fall in those categories. And that’s because dementia is not a disease, like we talked about earlier, it’s a symptom. And the things that are hard to deal with are the symptoms. That’s what makes the diseases so difficult, because they are disruptive behaviors, they are hard to manage, you can’t give them a pill to stop it. And understanding really how dementia works. And how it impacts the memory is really crucial. And it’s one of the first things that we need to do to understand dementia. When we talk about cognitive impairment that we said is the primary symptom of dementia, we’re talking about memory, cognitive brain is our our data, the things we learn through life, you know, the math, the spelling, the language skills, but they’re also the filters that we have, we’ve learned that this is correct. And this is an incorrect way of working or being. So dementia impacts those cognitive impairments. But on a positive side, there is also the emotional memory in our brains. And dementia doesn’t affect this as much, really not until the end. And so the emotional part of the memory is that pivotal portal that caregivers can have to reach those with dementia. So
Maria Ross 09:19
give us an example of that. What would it What do you mean by emotional memory? And what are some of those interventions that caregivers especially caregivers, listening who are taking care of someone in their life in dementia,
Barbara Huelat 09:30
those emotional memories or those with the senses, our sight, what we see what we smell what we hear an example a great example where there’s a great deal of research is that on music, how music can reach a person with dementia, where language in that language is a cognitive skill. Music is an emotional attribute. So when we use music and art and color and tact Little things, fuzzy blankets of funny puppies, various emotional things that trigger the emotion, you can get a response, even when cognitive leveling is really not available to us.
Maria Ross 10:15
That’s fascinating. And I know, I know, I’ve seen research around music and the power of music and not just even with dementia patients, but with autism with other with other. I don’t want to say diseases because autism isn’t really disease, but other afflictions that occur where sometimes there’s parts of our brains that we can’t access, again, in sort of a logical way, in effect based way. And so being able to access that emotional portion makes a lot of sense. And so were were you aware of that when you were in the caretaking phase, as you mentioned? Or was this did this come later?
Barbara Huelat 10:54
Yes, and no, I think I first became aware of that, in designing facilities, and health care design. When I talk about in my early work, early books, healing environments, it’s about the emotional connection to Being Well, staying well. And it’s about how, how healthcare institutions often don’t make us feel, well, they’re very intimidating, they’re scary. They’re terrifying. So how do you transform a medical environment to help the person heal, and to be able to move beyond their illness or surgery or wherever they’re in the hospital. And so I learned that there’s a connection there early, but I didn’t really realize how profound it was until I was a one on one with my mom was trying to climb a fence out of the nursing home, or leading a coup to get the other residents to leave with her, or my husband, who was throwing sticks over the fence at a neighbor. how important the emotional aspect was to connect with and connect with really what they were trying to express that did not have the cognitive abilities to deal with it. So what what are some
Maria Ross 12:17
of those? What are some of those tips around creating a healing environment? What were some of the things that you did in your design,
Barbara Huelat 12:24
in the design will use color as intuitive Wayfinding, for example, help people get through a hospital system, using art and music, from the lobby through the procedures, using aromatherapy, for example, in MRIs to help the body to be able to deal with the noise and the terror of going through some of these procedures. So I use elements of this throughout my practice. And when it when it came to dealing with them personally, I was able to modify them to be very personal to impact the person. So my husband was a great photographer and an architect. And when he had dementia, what harmed him was giving him a box of photographs to sort through, and it couldn’t tell you who they were in the pictures. But it gave him a lot of satisfaction going through his own photos. So by combining some of the elements that I knew and personally adapted to, yeah, he had more reward and pleasure from from those last days. Well,
Maria Ross 13:42
I wonder if there’s a lesson to be learned here. We often have talked about the redesign of office space, especially pre pandemic, a lot of workplaces. were redesigning workplaces to be more collaborative and innovative and inspiring and reconfiguring. Using space and using furniture and using layout as a way to create more innovation create more productivity, do you still think there’s space for that in the workplaces that people are going back to but also in the workplaces? They surround themselves in at home? What do you think are some mistakes that offices or people with home offices might be making that they don’t even realize are detrimental to their mental state?
Barbara Huelat 14:30
though? That’s a great question. Yes, I know in my work in office design, but the some of the healing factors in that was getting as much of nature in as possible. Access to Windows, everybody wants to be in an office with a window, why not just for status, it feels better, they can see the light of day if it impacts their circadian rhythm that’s going to impact their productivity. Now Nature is essential for us feeling good, being able to be more productive, more engaging, and for all those creative acts that we need in part of our workplace. And, and yet, there are still many windowless offices people work in. And that is, that really impacts their productivity.
Maria Ross 15:21
So I always, I always feel for the people, especially during lockdown that, you know, like, if I had had the studio apartment that I had, in my early 20s, I would have gone stir crazy because I had a window, but it was facing a wall of the building right next to us, there was no room to separate work and life, not a lot of natural light. And you know, people have had to work in that environment for a long time. But then on the other hand, there’s people that have really outfitted their home offices as an example, to be an oasis for them to be a place where they are, where they are their most productive, when they where they feel inspired, where they feel invigorated and where they can separate their home life from their personal life a little bit by separating their work area in their home.
Barbara Huelat 16:09
And, and also, I think, the reluctance of piece people going back to work, though, there’s, I mean, there’s empty offices all over, especially in the big cities, people don’t want to give up on windows for their pets, or their cat can sit on their desktop. And there’s elements in that, so much of it comes down to the nature and the biophilic need that we have to be one with nature, it just makes us feel good. And we’re going to be more productive when we feel good,
Maria Ross 16:45
right. And there’s so there are a lot of companies investing a lot of time and thought into reimagining their workplaces. Companies like box companies like Salesforce like Google, where they’re trying to make it a very attractive and nurturing and innovative environment, to encourage people to come back into the office and collaborate together. So I love that this is something that people are paying attention to, and leaders are paying attention to. I want to shift gears because I’d love to talk about, you know, your work is so much with supporting caregivers. And first of all, can you give us an insight into what caregivers are facing caregivers for dementia patients? What are they facing? What are they dealing with on a daily basis? Because what I want to segue into is how we can better support our employees or our colleagues that work who we know or might not know, are caring for a dementia patient. So can you give us a little behind the scenes of what their worlds are like and what are they dealing with in addition to having to work or lead teams or
Barbara Huelat 17:51
produce? Aha, that’s another great question. Caregivers have a lot on their plate, especially the primary caregiver. They’re the one that’s responsible. It’s like being a parent, and you have the child at home and you have to deal with daycare. I know when I was working and and my husband had dementia and was at home. I had to find caregivers to stay with them each day. One day a caregiver showed up drunk, what was I going to do? And you know, do you call in sick? Or do you bring him into the office like people do with children? And I think there has to be that understanding because caregivers are going to increase and everybody’s going to be a caregiver here and there. If not a primary caregiver, they’re going to be asked by a neighbor, hey, I’ve got to go into the office. Can you stay with Joe this afternoon, I really are I have an important meeting, I have to do this. And I need some help. So your caregivers, you might think of them as like parents of small children, they cannot be left alone. Once the the person with dementia enters into the phase where they can no longer do the activities of daily living on their own. They have to have a caregiver. And so that is that’s a piece that I think offices and corporations need to understand that there’s going to be an increase of caregivers out there. They have to provide meals, transportation, they have to get them to the doctor, they have to provide entertainment for them to do while you’re gone. They have to have help dressing they need up taking their meds, they need help keeping them in the house and just all of these activities together, in addition to taking care of their finances. So they could no longer do those on their own. So it’s I think the best way to think of it as taking care of a small child right and what that means needs to do while working
Maria Ross 20:01
well. And it’s extra complexity because you are dealing with an adult. And like you said, the issue of finances, things like that. And, and the issues of the blowback of that, especially if someone doesn’t, can’t properly assess their own cognitive state, you’re dealing with that. But also, I think there’s a assumption that if you are, if you’re caring for an adult, there might be a small window of opportunity that you could leave them by themselves. And that’s just not the case. You can’t you know, it’s, it’s, it’s not even like with a kid that you could give an iPad, there’s, it’s more complexity, and what you’re describing is a whole other full time job. And I think that that’s what we need to remember, not to mention, the emotional toll of watching who might have been appear to you or apparent to you previously, is now someone that you have to take care of you, we expect that as parents that we’re gonna have to take care of our child. What happens when the person that used to take care of us is now the person that we have to take care of that role reversal? Takes a big emotional toll, I’m sure. And so, on to my second question, what do you think workplaces and leaders could be doing to better support caregivers who are working for them? So that, you know, we talked before we started recording that? Yes, I mean, time off is great. But they also need support while they’re working. So what are some things you suggest, one of
Barbara Huelat 21:31
the big things that actually jazz was was most helpful for me was to allow me to bring my loved one to the office occasionally, not all the time, but when an emergency happened, to be respectful of when you need to work at home, then not I mean, I think you don’t want to always work at home and the caregiver needs to get out it’s Well, I was always grateful to have an office to go to to help clear my mind. Also, things that could help clear the mind times of respite. Just being understanding of what you’re going through, it is a there’s a very large emotional drain on the person. Person also has trouble sleeping at night. Usually, counseling therapy is really, really helpful. Because the caregiver is often considered the second patient, their health risk skyrocket while taking care of because it’s a long term chronic stress, it doesn’t go away like like an acute stress. So in understanding being able to have access to therapy and counseling, depression, anxiety is really important. And just having access to knowing who is a caregiver, just like snowing, you have a child that’s coming home from school at three o’clock, and the parent needs to check on that make sure that they got to their destination or their after school activity or whatever. There are times that the person though the the worker will need to check in at home and with their loved one, and be on the phone when there is seemingly a crisis. And it may not be this. But I remember one time I got a call and says Mom won’t come in the house. She doesn’t think it’s her house. How do you deal with this? Right? Right? You have to take the call and talking on through it and and calling my brother to help him talk her through it. How do you deal with that? Continued? issue? So I think being understanding, being open being creative, not you don’t even know what you can and is a possibility. And that’s what some of these interventions that I talked about in the book, and how we get a person through that particular disruptive behavior or mill? Or what
Maria Ross 24:09
is some of your best advice around someone who is caretaking for someone with dementia and they’re at the office? And they get that kind of call? Is there any advice you can give to anyone listening now that might find themselves in that situation? What might be the best way that they can approach it and sort of coach themselves through that situation? Let’s say they’re in a meeting and they’re in the middle of presenting and they get a call? What do you what’s, what are some suggestions you have?
Barbara Huelat 24:38
Okay, the probably the biggest suggestion that anybody can do, and it’s important that they have these conversations with the time caregiver, before they go into the office is what are the effective interventions for this, your particular loved one because it’ll be different with your mom or your spouse or My grandmother, whoever it is, but going through and the most effective intervention is a positive distraction. And a positive distraction works in all dementia is because the person with dementia has their short term memory is gone. So is if you can move them away from the awful event that is happening momentarily. In a few minutes, they’ll be okay. Like for my mom that wouldn’t come in the house is nice, I just did take her for a walk around the block and talk about everything that she sees. And you get to her house, and this is her front door. And this is her swing that she used with dad and talk about them. And by the time she gets to the door, walk right in and aborted because she forgot that she thought that wasn’t her house. And so by distracting the person using that intervention of short term memory, and relying on it, it almost always works or at times, nothing works. Right, right.
Maria Ross 26:14
But that communication with your caregiver or with your part time caregiver, or your part time support is so important that it almost sounds like I might be dumbing this down a little bit. But it almost sounds like having a disaster plan. Like if this should happen. While I’m presenting my big meeting today. Here’s what you might want to go through, you know, almost having that that sort of disaster recovery plan in place so that they can maybe do all the interventions they can do before it’s time that you’ve got to leave and you’ve got to come. Right,
Barbara Huelat 26:47
those conversations are so imperative. I remember, I went on a retreat, much needed retreat while I was caregiving. And the first time I did this, I didn’t leave those instructions with the my support team. And they call several times during the retreat, and the retreat was absolutely almost worthless, because I was so interrupted on the retreat. I did it again. Am I prep the caregiver, do not call me if this happens. Paul, my daughter, Paul, my brother, and I gave her a whole list of things to do. And that important meeting coming up a caregiver, do not call me between two and four o’clock in the afternoon today. Major happens, this is what you need
Maria Ross 27:44
to do the take these steps try these interventions. Yeah.
Barbara Huelat 27:47
And whenever I used a notebook and put those everything in the notebook and whoever was caregiving that day, and often it was not the same person, right? Get it from an agency, somebody’s sick, or something else, there were alternatives when they needed to have the same information. But your disaster plan? Perfect. That is? Well,
Maria Ross 28:13
and I think that that’s another challenge to point out is that unlike childcare, which is normally a little bit more predictable, you have the same nanny or the same daycare agency or the provider, that can be very different and stressful. If you have a worker who is the caregiver for someone with dementia, if they are relying on agencies that staff differently, they’re relying on part time support, if they’re not necessarily relying on a consistent, relative or friend. To do that. That’s just another layer of stress and complexity that these caregivers are dealing with. Yes. So what is your as we kind of wrap up here? What is your what are some final gems you want to share with us about how to make life and work easier for caregivers of dementia patients? Okay,
Barbara Huelat 29:04
but I think the best advice is to go with the flow. And that sounds overly simple. But you’re not going to you’re not going to cure the dementia, no matter how badly you want it and needed and to work with the way the person with dementia feels things and their reality, not yours. Not to question because the person with dementia, that cognitive side isn’t working. They don’t know how to respond to a question. And often questions as well meaning as they are can lead to really disruptive behaviors. Simple things like what do you want to eat? They get overwhelmed. Yeah, it’s too big of a question. And putting something in front of them that Oh, this smells good. I heard you love the cinnamon on the oatmeal. And it’s delicious today and giving them information about it is so much better than asking questions. So don’t ask questions. Don’t try to change the reality. And use emotions, especially the senses and nature are real positive lengths, as well as positive distractions. And you can you can go really far with that, and there will be mistakes, we all right, there will be meltdowns and challenges, but you don’t, if you realize you’re really not going to change it, and you can make it better, then that’s the way you want to go the path of least resistance.
Maria Ross 30:51
Exactly. I love that go with the flow. Well, thank you so much. We’re gonna have all your links in the show notes, and especially a link to your book, taming the chaos of Dementia Caregivers guide to interventions that make a difference. Barbara, thank you so much for coming on today. As I mentioned, we’re gonna have all your links in the show notes. But for folks on the go, where’s one place, they can find out more about you and your work? Probably
Barbara Huelat 31:14
my website. And there’s also a lot of helpful resources on my website, books that are important organizations, focus groups, a lot of resources for a for those caregivers at my website is very simple. It’s www and my name Barbara hewlett.com. And
Maria Ross 31:37
that’s Hu E, la,
Barbara Huelat 31:39
la T.
Maria Ross 31:41
Wonderful. And again, we’ll have those links in the show notes. But thank you so much for your time today and your insights.
Barbara Huelat 31:46
Thank you Maria with such a pleasure. And thank
Maria Ross 31:50
you everyone for listening to another episode of the empathy edge podcast. If you like what you heard you know what to do, rate and review and share it with a friend or colleague and until next time, remember that cash flow creativity and compassion are not mutually exclusive. Take care and be kind
