Smell the Zen Podcast 4 x Caring Kind - Scent and Memory

Hosted by Blueme Founder, Mei Xu, in conversation with Eleonora Tornatore-Mikesh, President & CEO of CaringKind, exploring the powerful link between scent, memory, and emotion—and its role in conditions like Alzheimer’s and Parkinson’s.

Transcript

SPEAKER_01 0:02

Hi everyone, welcome back to Smell the Zen, the podcast dedicated to sharing and discovering the most amazing sense that we have, the sense of smell. My name is Mei Shi, and I'm the founder of Bloom, a wellness fragrance platform. The more I dive into the stories and the science behind smell, the more I feel it is one of the most underestimated forces of human health. To illustrate, today I have the pleasure to interview the CEO of CareKind, New York City-based leading provider of services to help families dealing with Alzheimer's and related conditions. They have been on the ground providing free consultation, a 24-hour helpline, and one-on-one consultation to families going through the devastating difficult diagnosis and the treatment along with the patients. What they learn and what they find about the sense of smell will open your eyes. Because at the end of the day, our sense of smell is very primal. It helps us relax, prevent us from getting bad and spoiled food, as well as comfort us. And when we lose this power, it's a signal that something is changing in our mind and in our physical health. So now let's get more details. Thank you for inviting us. Thank you for having me on your podcast. And I'm very happy to be in this wonderful space that Carakind has occupied. And you've been in New York City for 45 years, Eleanora. Tell me how do you get into this type of work?

SPEAKER_02 2:10

So um actually I was a graduate intern here at Caring Kind in 1994, uh, postgraduate work, um, um, a gerontologist by education and a thanatologist. And um that internship um at for my graduate work really turned into a life's passion for wanting to help family members who are dealing with caregiving for um for neurodiseases like Alzheimer's disease and related dementia. And so it's really been my career now and passion.

SPEAKER_01 2:46

Very interesting. Is there a particular moment, a particular person, or uh an occasion that you can remember that help you make this choice?

SPEAKER_02 2:58

Yes. So I don't know if you remember the candy stripers in the hospitals. Remember when they used to be? Right. They don't call them candy stripers anymore, but I was a volunteer candy striper in the hospital while I was in high school. And um I realized I was assigned to a family and it was uh uh a husband and wife. And I was my assignment was to relieve the husband for a few hours. Um and when he saw me coming in at three o'clock, and I was with her for an hour, it was like I was sunlight. Um, you know, he just he he he just gave me this feeling like, how do I make more people feel like this? And so that really led me to a career of gerontology and really um now raising funds and running an organization like Caring Kind. Um I was the CEO of the Alzheimer's Association for the State of Connecticut. So it is really more than just a job, it's really a passion.

SPEAKER_01 3:59

I can tell because you are talking about it as if you are one of the family members. Yes. So many listeners may not know that smell loss is often one of the first symptoms. It is happening way before other symptoms can show up. That's right. Can you share some of your insight of observing that?

SPEAKER_02 4:23

Absolutely. And so it's really interesting. Um, you know, in in just the last two years, there's there have been so many advancements to treatment, and uh one of the things that Caring Kind prides itself in is we run one of the largest um early stage centers. And so we have access as part of our community here. Um we're sitting in one of the support group rooms, but we have lots of rooms here at Caring Kind that really service people with the disease of all types of dementia. And what we've noticed, it was very interesting. One of my um occupational therapists who's running a program noticed uh when we did things with different essential oils that many of our clients couldn't smell the oil. That is interesting, and um, and so this got me onto you know, how do we, you know, begin to elicit and do programs here to help with that so that we can help them discover what is it that they're lacking. And then um, and obviously when I met you, already I thought, oh, this is gonna be great synergy.

SPEAKER_01 5:39

This is meant to be. Yes. So um, one of the things that most people also realize, but not really understand why, is when we smell something, such as now we're smelling one of our fragrances, you will immediately think of um something that happened when you smell similar fragrance or the person, the place. What is the science behind that?

SPEAKER_02 6:05

So it's very interesting. Um, scent smell is very connected, obviously, to memories. And so us being able to help elicit, um, so for example, the smell of grass. Um, you know, uh today actually there was a program for men on baseball. And so if we associated the smell of grass with baseball season and conversations about their knowledge of baseball, oh a player or a player or a particular game, those are those you start to go down a memory lane that even though you're struggling with short-term memory, your long-term memory is elicited. And so it really, if you pair it with an activity, you would be surprised on what kind of emotional response that sometimes can really be a lost, forgotten, happy moment.

SPEAKER_01 6:59

And perhaps that can stimulate some of the brain functions, such as articulation, such as the ability to describe.

SPEAKER_02 7:09

So when before um I got into the philanthropy of of Alzheimer's, I ran healthcare centers, and we used to use the fragrance of lemon in the dining halls, in the in the dining rooms, because it would it would stimulate their salivary glands. Right. And it is a happy fragrance. And it is a happy fragrance. Yes. Um, I'm learning that. Yes. Um, but the um because a lot of times, you know, people um with memory impairment, even the salivary glands, are impacted.

SPEAKER_01 7:44

Well, because our sense of smell and our sense of taste is really connected. That's right. And I have a story to share with you, which is very personal. Um smell is um what happens when your olfactory bulb is interacting with the molecules of aroma. That's right. When the protein in the end of your nose gets in contact, and they are actual physical contact with the molecules, those proteins send signals to the brain and ask what is that fragrance? And then it comes back. Oh, this is uh, I'm just making it up. This is uh Sicily. Yes, Sicilian lemon, not just any lemon. This is Maya lemon, or this is our orange. No, it's not uh uh lemon, it's an orange. So that's how we know when we're eating, right? Not because of our uh taste, it's really our smell. Um the reason why it's so painfully clear to me is because I think I mentioned to you the work you do is so powerful in my view, because I lost my dad to Parkinson's and later on, Alzheimer's. I remember him coming to visit me when I had my two boys and busy mom and busy uh you know, entrepreneur. And we would be going into a stop by coffee, and he would take five bags of sugar, yeah, and he would say to me, May, American sugar is not sweet. You can taste it. I said, Dad, it's you, it's not the sugar. But I stopped right there. I went back to my work. Yes. Many, many years later. That's what I realized is that he has actually lost sense of taste and smell. Yes. 20 years before he's completely diagnosed.

SPEAKER_02 9:37

Diagnosed. And that's very common. Um, a lot of times I think you know, the science is taking us um where we can use this as a biomarker. And I know that this is early science that's happening right now with NH and other other entities. Um, but absolutely I think that there are signs that are pre-symptomatic that we probably aren't even tying into this um that could be very helpful.

SPEAKER_01 10:03

Very interesting. But you mentioned already that you notice some of the early uh patients, yes, when they are here, they cannot smell things. They cannot smell. What about at home? What are some of the symptoms that it's a sign that they are losing sense of smell by their family members?

SPEAKER_02 10:20

It's very interesting. We have um we have several clients that smell was part of their job.

SPEAKER_00 10:27

Right.

SPEAKER_02 10:27

Oh and um, you know, some um own different companies that it whether it was fragrance or whether it was they could be evaluated, they were in the coffee business. Right. And things like that. They had a nose. They had they were the nose. Right. And so um, and it definitely has been reported that, you know, um, maybe not completely lost, but distorted.

SPEAKER_01 10:52

I see. So family members will pick up cues of whet whether someone like they're eating maybe with more sugar, more salt. That's right.

SPEAKER_02 11:02

Well or they argue that this doesn't taste the same. And you've made a dish for 20 years, and all of a sudden the dish doesn't taste the same. It's not as good. It's not as good. Oh my god, it's the argument of it, but it's really because your taste has changed, your sense of smell has changed, which we know is tied into neurological disorders.

SPEAKER_01 11:24

It's a decline, it's one of the bodies uh that brings first signature of decline. Yes. And I wonder if you know the connection with smell. Are you offering anything with smell that help maybe slow down the decline of um?

SPEAKER_02 11:43

Yes, so we have um a new program here that we're working with called Owen. And Owen is a horticultural therapy program, and they're starting to do things like make teas and you know, different fragrances and flowers. Sensory sensory driven. But it's um working with dry flowers and things like that, um, um, making butter um things, you know, that's very very sensory driven. Um but also enjoyable. But enjoyable.

SPEAKER_01 12:14

It's not it's not like a training to remember things like canning.

SPEAKER_02 12:19

We try to make it relatable to something that you and I would want to.

SPEAKER_01 12:23

And they feel they have they have this capability still that everybody's learning everything.

SPEAKER_02 12:27

It's also learning, you know, things that they can apply to their own home. Right. Making butter is so simple and it becomes a skill, but yet smell and taste are critical. So critical, so critical. In order to enjoy the program, um, you know, but getting their hand in dirt is something that we really do try to through this program that we try to really um uh elicit.

SPEAKER_01 12:51

Very, very helpful. So you talked about the family members a lot, and that's who you really support and help, you know, your one-on-one consultation. I imagine your classes that you just showed me, it's all about picking up those early signs. But I remember my mom taking care of my dad, and I realized that a lot of times the caretakers, yes, they also sometimes may have similar issues as they're aging.

SPEAKER_02 13:20

100%. And what what do you do for for what do you do here for them? So a big part of our business is taking care of the family caregivers. Right. And as you mentioned, they're sometimes at greater risk for health issues. Um and many sometimes, because they don't take care of themselves, end up passing away before the person with the disease.

SPEAKER_01 13:43

I know a few families where the dad has Parkinson's, but it's the mom that was diagnosed for third stage cancer of some kind and left much earlier.

SPEAKER_02 13:55

Yes. And so um we um are actually expanding our services here at our office, and we're creating training programs so that it could do it could reach more people. But for example, um we're doing a sound bath for caregivers.

SPEAKER_01 14:13

That's wonderful.

SPEAKER_02 14:14

What is a sound bath? A sound bath. Um, we've got um licensed uh technicians that are in the therapeutic space, and sound, especially certain sounds at a certain um uh 40 hertz, right, um really does marvels to the brain and for the brain.

SPEAKER_01 14:34

It's like nature, it's like certain sounding nature. That's right, just meant to be soothing and calming.

SPEAKER_02 14:41

Absolutely. We love nature bathing, which is walk walking out to to take a nice nature walk. But the sound bath here on Thursdays, um, and this is an example that we want to make sure that to spread the training all over.

SPEAKER_01 14:56

Um it's almost like promoting education because more and more people are living longer. Yes. And the issue with uh any aging that's right bring that it's degenerative is spreading. It's more people are the problem.

SPEAKER_02 15:10

Education pieces that as a caregiver, you don't have to feel guilty for taking care of yourself. Sound bath is not a treat, it is a necessity. Whether it's sound bath or taking a walk in the woods, you know, any which way, it's take a moment and it's a rescue for yourself.

SPEAKER_01 15:31

So it's like in the airline when they say during emergency, put the mask on yourself because that's how you can protect your children and your loved ones, right? So if they're not nourished and they're not uh prioritizing themselves, that's right, then the care is not gonna be there for them.

SPEAKER_02 15:52

Well said. That is exactly what we do and why we do it for our caretakers. Respite is essential, it's not a luxury. And we try to educate and make sure that people understand there's a difference. It's sound breath is not a spa, it is a way to get connected to your body and breathing so that you don't go into having a panic attack. Um, and you learn to take a minute. Um, and it can be done, it's very inexpensive, and it can even be done whether it's meditation at home, a walk, a breathing exercise. We're just trying to teach them to take care of themselves.

SPEAKER_01 16:36

So, what you're describing really is what I would call a burnout. Yes. A burnout that is 24-7, yes, and it's day and night. Yes. Um, it's winter or summer.

SPEAKER_00 16:48

Yes.

SPEAKER_01 16:49

And sometimes um you just don't see the end, right? So I feel that it's not just a problem. I remember watching or reading one of your uh documents that when one patient is diagnosed, it's the whole family. The whole family. And um my thought was how do you think you and I, who deeply understand the the problems that um Parkinson's and Alzheimer's uh family go through, how can we do more for the family? Because by helping them, we're helping the patient, right? Eventually. How do you think some of the things you're doing can be replicated?

SPEAKER_02 17:31

I think through trainings, education, through partnerships of different communities. I love the cross-sector of industry. So things sometimes remain in the medical field and don't cross-sector. What I love about this is we've cross-sector. Um, and I think that it will reach a broader community. And um, I think people will understand that it's not a luxury, it's a necessity, and it's something that we have to advocate for ourselves.

SPEAKER_01 18:03

You are absolutely right. So when people ask me, what do you do, May? Because they know I've been in the fragrance business for such a long time. And when I say I'm in the wellness fragrance business, they often say, So it doesn't mean that you just make fragrance that smell great. Right. I said no. Fragrance is a science. That's right. We have over a million molecules in the world, and there are science behind which fragrance actually slows your brainwave down, such as lavender or even rose. And they go much beyond just feeling good. That's right. So, what Bloom has done over the last three years is really going backwards. Instead of putting fragrance and ingredient first, like most of our brands, we actually say what are the emotional benefits people really need when they're home or when they are tired. That's right. And we had an interview with over a thousand people before we even start our journey. And then we come up with 20 of the top benefits people really want. And you can imagine this was during COVID, so it ranges from comfort to safety, cocooning, relax, balance, focus, because why? Everybody is at each other's throat. They were all on Zoom taking online classes. Everyone is feeling they are on the screen day and night. They need escape. Yes, they need a way to quickly rebalance or focus. So that's how we started. And when I um realize what you're saying about giving yourself a moment to breathe, this is what I think bloom can help. Yes. Um, not only in um the therapy aspect, which is the eight fragrances I I shared with you that we already have, which kind of carries you from day at as a spiritual way of using a fragrance to bring your awareness to the end of the day when you sleep, right? But also, I'm not sure if I mentioned to you, and I brought it here, yes, is we come up with the first true smell test that includes all fragrance families. Take a look.

SPEAKER_02 20:22

I am um this is very exciting because you know, one of the things that caring kind prides itself is really early detection. And so if there is a web if there is a tool that can help start to have the early conversations for early detection, that's amazing. Um, I mean so I'll give you a little bit more information.

SPEAKER_01 20:46

Um right now we are about to launch our first IRB independent research study, and this one is very well designed to protect fragrances. As you know, if you wear fragrance, right? That fragrance molecules are very fragile. It goes, evaporate, it gets damaged with even light and definitely air. So we seal each of the fragrance card so that they are not contaminated or um compromised, okay, right? Because there are 30 of those in this box and it has a um QR code, so it's an at-home test. You can do it at doctor's office when we um launch it after our uh study, or you can buy it and just do it at home. At home. What it does is it has three dimensions. It asks you what are you smelling? Is it a lemon or is it a um actually we even have something called uh a baby powder? So it's it's both fragrances that you smell in nature as well as uh environmental. Interesting, and then it asks you how strong is this for you? Because that's a threshold to us. Of course. As we lose sense of smell, we lose the ability to see how strong they are. Interesting. As well as identification. And the very last one, which I'm very happy about, is the articulation. So if someone has lost some memory, they can't remember what they're smelling, but they feel it reminds me of a swimming pool. Or it reminds me of a new baby. Interesting. That is where they can compensate. So we're very excited about this. We're about to launch it in a month. Okay. In um in online as well as uh in our store in Soho.

SPEAKER_02 22:40

Well, we would love to, you know, participate in this, you know, and have it here for our available for our clients.

SPEAKER_01 22:46

Well, for now, I want you and your your um volunteers and your team to start uh testing it and give us feedbacks. For example, is it too long, you know, for your audience? Is it too long because at the end of the day, you know, smelling eight fragrances is one thing, smelling 30 things maybe a little too much. So what we do is just like what we're doing with um the therapy itself, right? It's really at the very first time, always trying to go to the actual users and gather information so that we can provide that early screening that you're talking about.

SPEAKER_02 23:28

I mentioned earlier to um you know, we call them the worried well. Right. Um, and people want, if they've had this in their family, now that there is some treatment.

SPEAKER_01 23:39

50% right. 50% chance they will have the same problem.

SPEAKER_02 23:43

And so if they have this in their family and now there is early treatment, right, people want to get ahead of it. So having these smell test kits as something else that they can do, because we oftentimes, you know, for decades, there was nothing we could do. So this is such a step forward to starting taking a little bit of control.

SPEAKER_01 24:05

I commend you for this. Thank you. And you know how it inspired me um what you do. So as we close uh today's episode, maybe you can tell us how can people help you as well as um joining your service if they already have a loved one.

SPEAKER_02 24:23

Yes.

SPEAKER_01 24:23

Um, particularly if they're not in New York City, what are some of the means they can get training or a consultation?

SPEAKER_02 24:30

Yeah, so our services are um available also online um and through via Zoom for clients, and so we do service people um, although we are headquartered here in Manhattan, um we also have a subsidiary office in Long Island. Um we um many of our clients, you know, COVID allowed us to realize we service people the tools around the entire country, right? And so people moved out of the city and still were using our services, and we thought this was incredible, this was a way. So, really, um, just to go to our We Are Caring Kind uh website and really start navigating, you know, have a session with one of our social workers and starting to get plugged in. The other thing I will share is if you have a friend, a colleague, a neighbor, and you see them struggling, give them our card, our website, because people don't need to do this alone anymore. There are services available, and I think people um oftentimes didn't speak about it. We have to get into a place where we're reducing stigma around this so we can get people to start doing things for early detection.

SPEAKER_01 25:44

Early detection and uh therapy using sound, using uh smell. Yes. But I really want to thank you and all your um your beautiful uh spirited staff because um I know that I miss my dad every day, and I wish um I had known you then. But for the sake of him, um all of us are here because we have families, or we know of friends and families that are going through this difficult treatment and diagnose because it's going to last a long time. So thank you for your work. Well, thank you. And I'm so glad we get connected.

SPEAKER_02 26:22

Yes, absolutely. Thank you.