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Podcast

#026 Katya Deluisa: Cultivating a Dementia-Friendly Society (The Infinite Mind)

Nov 8, 2023

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The Dementia Learning Institute is Ushering In a New Era of Well-being for Patients and their caregivers

In this episode, we dive into the fascinating world of dementia care with our guest, Katya Deluisa, of The Infinite Mind. Katya shares her journey and how she became involved in working with individuals with dementia after observing the loneliness and lack of connection experienced by individuals with dementia, even when surrounded by family. Katya’s grown a passion for educating families on how to better understand and communicate with their loved ones.

 

The conversation delves into the nature of dementia and the physiological changes that occur in the brain. Katya explains that dementia is a symptom rather than a specific disease, encompassing a range of conditions that affect cognitive function. She discusses how dementia impacts memory, imagination, and the ability to plan for the future. 

 

She also highlights the importance of understanding altered perception in individuals with dementia and the challenges they face in perceiving and navigating the world around them.

 

The role of caregivers in providing support and care for those with dementia

 

Katya emphasizes the need for caregivers to focus on their own self-care. It’s vital to maintain balance while caring for a loved one with this debilitating condition. She shares personal stories of caregivers she’s worked with, highlighting the transformation that can occur when they shift their perception and approach.

Throughout the conversation, we discuss regenerative approaches to dementia care and how individuals with dementia can still experience moments of joy, love, and connection. Katya brings focus to the unconditional love and purity of spirit that individuals with dementia possess, even as their cognitive abilities decline. She emphasizes the importance of empowering families through knowledge and shifting their perception to recognize the changing capabilities and needs of their loved ones.

Katya’s approach to dementia education and caregiving goes beyond the conventional methods. Through her collage communication technique and other innovative approaches, Katya has helped individuals with dementia express themselves and regain a sense of identity.

Katya’s work in educating and supporting families affected by dementia is a valuable resource for those seeking guidance and understanding in caring for their loved ones. If you’re a caregiver, have a family member whose mind is fading, or just want to better understand this condition that grips a growing percentage of our global population each year, this episode is for you.

Compassion and understanding when caring for someone with dementia

One big takeaway is the importance of compassion and understanding when caring for someone with dementia. Katya emphasized the need for caregivers to shift their perception of their loved ones as they navigate the cognitive changes brought on by the condition.

By seeing individuals with dementia as beings in the process of releasing their ego and becoming their unique essence, caregivers can foster a deeper connection and provide better support. This shift in perception can lead to a more profound and meaningful relationship between caregivers and their loved ones.

Another important insight is the power of communication and connection. While individuals with dementia may lose cognitive abilities over time, their ability to love and be loved remains strong. Katya helps us remember that even in the midst of cognitive decline, people with dementia can still express and receive love, creating moments of profound connection.

By understanding and embracing different forms of communication, such as using visuals or art therapy, caregivers can tap into this fundamental aspect of human connection and enhance the quality of life for both themselves and their loved ones.

 

Caregiver education and support

 

The interview also highlighted the need for caregiver education and support. Dementia care can be emotionally and physically draining, and caregivers often face challenges managing their own well-being while providing care. The value of self-care and support networks for caregivers shouldn’t be overlooked.

The Dementia Learning Institute is an invaluable resource helping caregivers navigate the complexities of dementia care and find solace in sharing experiences with others facing similar challenges.

Lastly, Katya emphasized the ongoing need for awareness and resources for dementia care, especially in rural areas. While progress has been made, there’s still much work to be done to expand access to information, diagnosis, and support. Katya’s work with The Infinite Mind offers such education and resources to communities in need, empowering individuals and their families to better understand dementia and provide adequate care.

Katya’s work with The Infinite Mind aims to bring education and resources to communities in need, empowering individuals and their families to better understand dementia and provide adequate care.

The transformative power of understanding, love, and connection

 

This interview with Katya de Luisa has broadened my perspective on the realities of living with dementia and the transformative power of understanding, love, and connection in dementia care. Through her advocacy and dedication, Katya is making a profound impact on the lives of individuals with dementia and their caregivers, offering hope and guidance in the face of this challenging condition.

Be sure to check out the resources available through her websites, “https://theinfinitemind.org” and “https://dementialearninginstitute.com.” These resources provide educational materials, support groups, and coaching services for caregivers of individuals with dementia. Links can be found in the show notes.

If you know someone who would find this episode helpful, please pass it along to them. If you’re finding the podcast for the first time, be sure to subscribe to the show on your favorite podcast player, YouTube, or sign up to our mailing list to stay updated when new episodes are released.

May we all find the compassion we need to embrace ourselves for who we are…

To follow more of Katya Deluisa’s contributions toward a regenerative world, check out:

 

Episode Transcripts

[00:00:00] Jason:

Hello, and welcome back to Regeneration Nation, Costa Rica. I’m your host, Jason Thomas, and I have a very special guest with me here today. Katya Deluisa. Katya is someone who I met very early when I moved to Costa Rica. She supported a lot of what we were doing with our farm, and when I had a store in town, a community center, she came by to support us.

She’s just always been so kind and generous to the community, reaching out, helping people, helping with the youth. Katya has a really interesting story. I think she might be here longer than any of my other guests to date. She says she’s for 43 years. That’s right, huh?

[00:00:40] Katya:

Yep, 43 years. My sentence is almost up, and they’re going to release me soon. 

[00:00:45] Jason:

Well, you’ve done a lot of wonderful service in the country here. Katya has been a dementia educator and caregiver coach for 25 years in Costa Rica, as well as for clients in the United States. She’s also a freelance writer whose articles focus on healthy aging and dementia.

She’s the author of a book, Journey Through the Infinite Mind, which covers the science and spirituality of dementia, which is also available in English and in Spanish. Before working with dementia clients, Katia was a tourism operator. She also pioneered some senior services around the San Jose area, and for 15 years, she worked with street youth. 

 Beyond all that, Katya is also a very talented artist and shares her work publicly, and I always love seeing what you come up with. So, thank you so much for reaching out to be a guest on the show. Dementia, working with the elderly in general, really isn’t the first thing people think about when they think about regeneration, right?

[00:01:54] Jason:

And, really, when I rebranded the podcast, I wanted to make sure that we’re covering not just ecologically regenerative projects but socially regenerative projects. We have so many people in our elderly population, and dementia is a real reality. It’s a, it’s something that affects countless families and makes its way into really almost every facet of their life, and the work you’re doing is really special, it’s unique, and I’m really grateful that you’ve come to share what you’re doing with us to bring more awareness to that work. 

[00:02:30] Katya:

Thank you for having me. I really appreciate it. 

[00:02:33] Jason:

Katya. 

I’ve given a little bit of your bio, but go ahead and tell our listeners a little bit more about what’s brought you to Costa Rica and the journey you’ve been on to bring you to the work you’re doing today. 

[00:02:44] Katya:

Well, I was a single mom, 34 years old, and I came here with two small children, five bags, and $900 in 1980. I just had an instinct that this was a good place to be. I really didn’t know much about it at all. I just found it on a map, and I said, Okay, we’ll go live there. I have a history of moving around suddenly from place to place. So this wasn’t like a brave move or anything. I sometimes wonder if it wasn’t. I’m surprised I survived this long, actually. I took my $900, bought horses, and I created the first. tour operation on the Pacific West Coast. I took my horses through the National Park in Manuel Antonio. I had a great tour.

But there were no tourists. We had the Nicaraguan Civil War going on at the time, and it was. We were pretty hungry. So I said, oh, we need to make maps. We have no maps in the country. They don’t know where we are. So I, sold the horses, moved to San Jose, and taught myself how to make maps and how to find printers and do all the processes.

And for five years, I created different tourist maps for the country, so that was a first. And in the meantime, the tourists started arriving. During that time, I was living in Limon, and I just noticed a lot of street children on the streets. So I went to the Child Welfare in San Jose to ask for help.

And I was told by the director, Oh, Senorita, we have no street children in this country. And that really… Excuse the language, pissed me off. But I just decided that, okay, I’m going to start a program for street kids. So I started a recreational program for them because they’re out really trying to find money to bring to their families, or they’re on the streets just trying to survive.

And, they didn’t have a life of being kids, so I had camping trips, and I had swimming pool once a week, and we did all kinds of things, art classes, and I did that for 15 years, and after 3 years, of doing it, the child welfare caught up with us, and they started their own street kid programs, and then other organizations started them.

I stopped doing the Street Kid program after a few years because I wanted to concentrate on my art career. So I moved back to San Jose, and I became a professional artist for quite a while, and I did really well. During that time, I decided to go back to the United States. So here’s where dementia comes in.

I moved back to Sarasota, Florida. I got a live-work studio in an art colony in the town there. I used to provide therapeutic art programs. I would develop them for different organizations. And so, a nursing home contacted me to develop a therapeutic art program for the residents.

And I’d never worked with the elderly. So I went in, and I had everything all setup. I had ten residents sitting there, and some of them were drooling, some of them staring off at space, and none of them were listening to me to pick up their paintbrushes. It was like, what is going on? And one of the employees says, Oh, they have Alzheimer’s and dementia. They can’t do art. And I went, hmm, okay, this is a challenge. I said I’m going to find something that they can do. 

[00:06:03] Jason:

Oh my gosh. I can’t believe that would be a response. I would think that would be the perfect thing for them to be doing.

[00:06:08] Katya:

Well, people with dementia can’t physically handle their hands. In other words, the brain-body connection is lost. 

They can’t follow directions. So, yeah, they were pretty right in some ways. It’s just certain art forms needed to be, you know, they needed them to be presented in a different way.

I can’t tell you; I must have spent 10 hours a day at that nursing home just hanging out with the residents and really listening to them, and then I’d go to the library and get videos, and I’d watch videos half the night on brain function and dementia. and even Down’s Syndrome. I wanted to know suddenly how the brain worked.

I’d never really thought about it. And I did develop a collage, which I’m basically a collage artist. I developed a collage process for them, where I got a lot of volunteers from an art school and the families themselves. And they were the companions. So, the person would pick the pictures out of the magazine that they were attracted to.

And the companion would cut and put the paste on it, and they would decide where they want it. So it was basically their art piece. It’s just the companion did the mechanics. And it worked really well with everybody, even late-stage nonverbal people. 

One day, I had a wife and a husband. The husband was in very later stages, wandered all the time, mumbled, and was nonverbal. She started to cry, the wife, looking at the collage they’d made. And I said, Mary, what’s the problem? And she said, you know, for seven years, I’ve been visiting my husband in this nursing home every single day. And for seven years, I have not believed that he even realized I was present with him. Because he didn’t even look, he couldn’t look you in the eye or anything. he would just look off. And she was just sobbing, and she said, Look what he did. And she held up this collage with pictures that he had picked out, and there were several pictures that she said were part of his life. He was a basketball teacher. There was a basketball in there.

He picked out things that were part of his life. And up in the corner, there were the words, big words, that said, I’m okay, I’m alive. And she said she kept trying not to pick them, and he kept touching them. I’m okay, I’m alive. It was the first time I realized that they were communicating with their collages.

I said, oh, wow, this is amazing because everybody is judged by. You judge someone’s cognitive abilities by how they can respond to you, how they can talk. You don’t really know what’s going on when they start losing communication. 

So, I presented my findings, and then I started studying why pictures were so effective as a communicator.

And I brought my findings to the Alzheimer’s Association. Long story short, we partnered, and I got a $25,000 grant. I developed this collage communication. I called it CCT, Collage Communication Technique. And I was training caregivers all over the county. And then we started doing international conferences.

And then I started getting calls from across the country. I bought an RV. And I started traveling and doing two and three-day seminars across the country. And then, I came back to Costa Rica and did the workshops here, also. 

[00:09:28] Jason:

Oh my gosh. I’m just covered in goosebumps. That’s, you know, like that, that story of awakening opportunities for communication is it’s particularly moving for me. You know, um, Cedar, my son, he’s got, actually, I don’t know if I ever described to you what we found out why he is, doesn’t speak and has the delays.

He has a chromosome abnormality they just discovered, and there’s only a short number of people on the planet that they found with this so far, but you know, Cedar is slow to everything. 

[00:10:07] Katya:

I remember when she was pregnant with him. I remember when he was born. 

[00:10:11] Jason:

Yeah. And so he has that, that sense of wonder, like kids with downs, where he’s just enraptured with life and super present, but he’s almost 13 years old, and he still has very few words that he can say.

He’s got some sign language that he uses, and we’ve used as many experiments as possible to get him to. To get to understand what he’s thinking and what he wants, whether it’s pointing and grunting or learning a new sign or in the early days when we moved back to the States to start exploring with them, the therapists cut out a bunch of pictures, and they had, they just had a picture board and he was able to select images and put it on the board to describe which therapies he wanted to use that day.

Something as simple as that lit that kid up so much that he had image options that he could select and put where he wanted it to communicate something. And for someone who is locked inside of his little world, having so few abilities because of the apraxia and all of that, to be able to take his thoughts and put them into a form that other people can understand, the imagery was one of his first ways to effectively communicate things by taking pictures, picking them up and showing them to us, even before his motor skills were developed enough to do the signs we were trying to teach him. 

So I can just imagine later in life when people lose that capacity, and they still have a cognition, how absolutely thrilling that must be for them in their own way to be able to all of a sudden have a way to communicate what they’re thinking or feeling.

[00:12:10] Katya:

It’s a little different than what you’re describing with your son. What you’re describing with your son is used with autistics. It’s called picture communication. They use pictures for them to pick the pictures to say what they want to be. There has to be a certain amount of cognitive ability to understand where the person with dementia is losing cognitive abilities.

But part of what I ask in my book is, Are the brain-generated thoughts and the mind the same? Because I don’t believe they are. I believe that there is a consciousness without brain-generated thoughts. In other words, the mind is bigger than the brain. So if the brain is damaged, there’s more of a consciousness and awareness, more of a gestalt awareness of what’s going on than people realize because we use words in cognitive thinking as a way to measure how much a person is there. And the picture communication that I put together wasn’t that they actually cognitively were picking those pictures to communicate. They were attracted to those pictures, and those pictures were always something that had to do with their lives or what they were feeling or experiencing at the time, even though they couldn’t cognitively be able to express or even understand what they were feeling. They were only experiencing it. They would find a picture that would correlate to the experience without thinking about it.

In my art classes, I always taught people to shut off their thinking brain because if you’re in the creative space, the actual creative space when you’re doing art, you’re not thinking. The art is creating itself, and when you look at your finished art piece, you’re looking at your interior self, the self that you usually don’t see.

And that’s what happened with this collage communication process. You were actually able to see them, the true them. You could see their story. You could see so much about them. And as a result, there was a communication that was so much deeper than words, so much more connected than what our brain is capable of doing.

You know, it’s a heart connection. That’s something I also teach is I teach how to communicate using heart communication because it is a second brain. The heart actually has its own neuronal system, its own system of emotions. It’s amazing when you start to study heart communication. It’s stronger than the brain, actually.

But it’s not a word-generated communication. We really rely on words and cognitive thinking far too much when we’re interacting with each other. 

Dementia taught me so much about human consciousness. 

In my book, I talk about spirituality because I believe it’s just an incredible spiritual journey for them and for the people who have to struggle to take care of them.

You know, you’ve changed. The whole family is changed when someone gets dementia, and it doesn’t have to be negative. Doesn’t have to be. That’s how I focus I educate. I educate you on what is going on in your own brain. How does your own brain, how do you know how your own brain works? I ask that to groups when I’m doing talks, and nobody ever raises their hand.

Nobody understands the neuronal system of their own brain. So how are they going to understand what happens to somebody when that system gets damaged? So part of everything I teach is a basic how the brain functions and then how it’s changed by dementia. 

[00:16:01] Jason:

All right. Well, now you’ve got me curious. Can you describe what you understand about what exactly happens when dementia comes on? What are the physiological as well as, I guess, consciousness changes that are happening? 

[00:16:20] Katya:

Okay. Well, the brain is a physical organ. It’s like a, it’s like a computer. It really is like a computer, but they have not built a computer that can even equal the abilities of the brain. I know you start to lose memory, but you’re conscious understanding, your conscious awareness, is only 5% of what your brain is doing.

95% of your brain is a totally subconscious function, and that includes memory, storage, experiences, and everything else. So when people have dementia, what’s noticeable is that 5%, they’re losing that 5%, but they’re not losing so much of that 95% that still has information intact. But, again, how do you communicate subconscious information?

With Alzheimer’s disease, it’s a process where beta-amyloid is a sticky substance that our brain normally produces, and we normally keep it under control and flush it out. With Alzheimer’s, it accumulates, and it accumulates on the neurons that pass all the information, and that sticky substance kills the neurons and destroys the connections between the neurons, which are the information centers.

And they have to communicate all the time. We have 86 billion neurons in our brains. And each one of them has over 5,000 connections to other neurons. So you can imagine the storm of electrical activity going on in a person’s brain. The neuron is intact, but the connection to the information is broken.

So, they lost the words to explain. They can’t piece together the steps to do something like to make a sandwich. Just to make a sandwich it can take anywhere from 8 to 15 steps to make a simple ham sandwich. You have to know what sequence they’re in. You have to know where everything is and remember where everything is.

You have to remember how it’s stacked. You have to, first of all, imagine what it looks like before you even go to make a sandwich. 

That’s lost. You lose the ability to imagine something in your mind.

[00:18:35] Jason:

We take so much for granted. 

[00:18:37] Katya:

We do. You know, when you lose memory, there’s been science, I do a lot of studies on science because it’s the best way, when I’m talking about consciousness, people, you know, oh, wow, that’s so woo woo.

No, but then I can give them scientific facts that back all of this up. And one of it is that they discovered that when the memory centers in the brain, the imagination centers are also triggered. with the memory centers. In other words, you have to have memory to have imagination. As a result, people with dementia lose their memory, and are losing imagination.

If you lose imagination, you lose the ability to plan the future. You can’t plan the future. Because you have to imagine the future. 

It’s just fascinating when you start looking at consciousness and how we work consciously, what how our consciousness operates, and then how it operates when pieces of that consciousness, that operational system is damaged.

That’s where dementia is, you know? I mean, they lose attachments. They lose ego. And eventually, they lose the mind-body connection, so they actually lose the connection to pain. And if they’re cared for properly, they lose suffering. 

Those are the three elements in Buddhism that lead to enlightenment. And that’s a 2,000-year-old philosophy. Release of attachments, release of ego, and lack of suffering. Letting go of suffering. So it’s all about letting go. And in Dementia, it’s just like unraveling this ball of string. And it looks like it’s getting smaller, but at the middle of that ball of string is the connection to everything.

They’re connected to everything. And to us, it looks like insanity because they’re floating from one consciousness to another, they’re mumbling to themselves, they’re talking to invisible people. Who the heck knows if that isn’t really something that exists? And their veils have come down, and they’re actually able to live in those realities.

It’s a really sticky slope. When I’m trying to teach families how to relate to their loved ones, I talk about energy. I talk about emotions being contagious. I talk about how they can make a better environment, which is basically feng shui for the person with dementia.

I talk about how to work with their energy frequencies of emotion. I don’t use those words, but I basically have a very simple vocabulary that explains these things in a way that’s palatable to a person who has never thought about them or experienced them consciously.

[00:21:38] Jason:

So besides the art therapy that you’re doing, are there any other techniques or methods that you’ve used to open up a window into these people’s consciousness that you can identify more than you were otherwise? 

[00:21:58] Katya:

I stopped with the art therapy quite a while ago. When I started doing the, focusing on communication, there were only so many things you could do at once. Helping to educate people to understand the inner world of their loved one’s dementia. I can’t tell you how it changes the dynamics of how they see them, how they relate to them, and how they interact with them. It totally changes everything because everything is perception. When we perceive them as being nothing but a problem when we perceive them as being, this is a horrendous situation, and I’m a victim of it because I have to take care of all these people. It’s a terrible dynamic for everybody involved. And it can’t be helped unless they get educated about what the possibilities are and what is really going on. So my focus is education on dementia and how to use very simple tools to make your life better for both of you, for both the person with dementia and for the rest of the family, because what you learn, you can teach the rest of your family.

And for the person with dementia, the saddest part of that initial job that I had in that nursing home was seeing how alone they were. Even when they’re surrounded by their loved ones visiting, they are still alone because there was no meeting of them, there was no meeting between them.

The families were doing their mandatory visit, and they were already emotionally detached from the person. The person had become so strange, and you couldn’t connect with them anymore. It was heartbreaking for me to see that because I spent so much time with those 25 residents, I really got to know them.

And I know it was heartbreaking for them, even though they weren’t cognitively understanding what was going on. They’re basically alone in this bubble of dementia, even if they’re loved by the people outside of them. So, being able to open communication like what happened with your son, where your son was able to reach outside of his bubble and communicate some of his needs, for him, that was like, that was just, the world just opened up for your son.

And the same thing happens for people with dementia. It’s not the same, but it is the same in the sense of how they are and how you feel emotionally. 

[00:24:31] Jason:

So what kind of techniques are you using? What kind of things are helping? 

[00:24:36] Katya:

For instance, I’ve just started a new technique of how to release suppressed anger. I write articles, and I think about something where there’s a specific problem in dementia between the caregiver or the person with dementia or both. And I read an article, and I post these articles all over the world.

I’m on a lot of different sites. And they get incredibly good responses. And then I think, okay, now with this problem, how can I create a therapy that would help to alleviate that problem? And recently, I wrote an article on repressed anger and how it makes the caregiver sick. And then it just came to me that I figured out a way to do an actual exercise that they can do that will help with repressed anger because often repressed anger is not just about their situation with dementia. It goes much farther back. And so, being able to release that energy of anger is more important than talk therapy. In other words, talk therapy, I feel, just reinforces the problem.

Because your neurons are reconnecting and getting stronger every time you tell the story, where it hasn’t been resolved, if it’s still a problem if it’s always a problem, the same problem over and over again, you’re strengthening those neuronal connections to that problem, makes it harder to finally move on from it.

I believe that there’s a voice, a sound. I’m working on that. I’m going to actually be doing a trial session with a caregiver in Esterios. For myself, I’ve got a lot of oppressed anger. I’m not a caregiver, but I have repressed anger. And we’re both going to do it. And we’re both going to feed back and forth information on how, whether this works or not.

Then, if it works for both of us, then I’ll write it up, and it’ll be incorporated into my caregiver training. That’s basically how I learn the things. I try them out on myself. 

 You know, there’s a question that keeps jumping into my mind. I’ll ask it now. Can you describe the difference, or is there between Alzheimer’s and dementia?

[00:26:52] Katya:

Alright, dementia is a symptom. Dementia is not a disease. It’s a symptom. It’s several symptoms that prevent the person from being able to function. Alzheimer’s is one of the causes. Lewy bodies. Dementia is one of the causes. Vascular problems. Dementia is one of the causes. Even thyroid imbalances can cause dementia-like symptoms.

Dementia is an umbrella term for a series of physiological and cognitive problems.

So it’s just, it’s symptoms. Yeah. 

[00:27:27] Jason:

Do you find that the treatment for that symptom is pretty much similarly effective no matter what the cause is? 

[00:27:37] Katya:

There are different treatments for some like Alzheimer’s is incurable. There is some medication that can slow down the symptoms. It does not prevent the symptoms. It does not get rid of the symptoms. When the medication stops, they’re right where they would have been if they’d never taken the medication.

There’s Lewy bodies is incurable. Vascular dementia, at some point, just keeps progressing and becomes incurable. So there are incurable dementias. And then there are curable dementias, such as I said, thyroid. Well, if you get the thyroid back in balance, the dementia symptoms disappear. Over-medicating is one of the biggest causes of dementia, or the increase in dementia symptoms in people who already have it, is this over-medicating that doctors do?

I’ve known families that have taken their loved ones off of all of their medications, and suddenly, they were clear. So you never know if even the overmedication is causing dementia. As far as cure, it’s, it just depends on the cause, and that’s why I always recommend that people take their loved one to get diagnosed, or if they’re having problems themselves, they should get diagnosed.

Because it might be something curable, or it might be something preventable. Even if you’re diagnosed with Alzheimer’s, there are lots of things you can do to slow the symptoms to where they’re really slow and really manageable. 

[00:29:05] Jason:

So, here in Costa Rica, you’ve been really close to the movement and even pioneering much of probably what’s happening here now. As you interact with the health professionals in Costa Rica and the institutions that they work for, what are some of the steps forward that you’ve been really happy to see that the institutions or that Costa Rica is a nation, or the medical institution, here has been adopting, or moving forward with, or making to make life easier for these people? What advancements have you seen?

[00:29:42] Katya:

Alright, well, several years ago, there was only one organization that worked with dementia. It was called, it’s called ASCADA, and it still does. It’s basically the Costa Rican Alzheimer’s Association, but they’re based in San Jose, and they do have a monthly caregiver information meeting. And they get a, quite a turnout, but they’re based in San Jose. 

We still have doctors who are diagnosing dementia as, Oh, you’re just getting old, you’re losing your memory. We still have doctors doing that. We do have an absolutely fabulous geriatric hospital, Blanco Cervantes, and it has a world-scale memory clinic for diagnosis and treatment. And that’s the only one in Central America. It’s really a good hospital. I’m actually part of that hospital. 

We have, there’s more awareness about dementia, it’s more in the news than it was. But we’re still pretty far behind the rest of the world. And even the rest of the world just doesn’t know what to do with the steadily increasing numbers of people getting dementia.

I mean, 50 percent of people over 85 have cognitive issues. 50 percent of all nursing home people have Alzheimer’s or other dementias. And Alzheimer’s starts to show up usually around 65, unless you have a genetic Alzheimer’s, which shows up much earlier, sometimes in the 40s. 

I’m happy with the fact that it’s coming out of the closet, let’s say, but I’m not satisfied with the fact that it’s not getting out to the outlying rural areas, even with the availability of the internet and everything.

I’m doing talks where I’m getting about 35 to 50 people attending my talks in rural areas, and I’m realizing that they have absolutely no knowledge of what’s happening to their loved one in the home with dementia. None. And so it’s just, whatever I’m giving them in the talk is the first they’ve ever heard of it.

 They just thought the person was getting senile or crazy or whatever, and we’re such a tiny country. There’s no reason why we can’t spread this word, but there are no resources for it. You know? I mean, the Alzheimer’s Association doesn’t have the resources to create an outreach program.

The hospitals, the CAJA, the public health system don’t have the resources. Although they have clinics in all these outlying areas, they should have a dementia specialist in every clinic, but they don’t have the resources to have someone like that. They don’t all have neurologists or even gerontologists in those little clinics in the rural areas.

So, I turn people on to what dementia is. What is your brain? How does it work? How can you improve your care? And then I also have a resource page with all of the links because everybody’s on their phone. They just never think to start looking up and studying dementia. They just have to be reminded that you have the capability of checking it out yourself, not just waiting for some doctor to tell you what it’s about.

You can actually go online and learn yourself what you need to learn. Everything from how to bathe them, how to feed them what they don’t want to eat, what are the symptoms, what’s the progression. That’s all online and in whatever language you’re speaking. So I remind people on the resource page that there’s a whole list of resources that they can find online on their phone to start learning. it’s about empowering the families through knowledge.

[00:33:26] Jason:

Yeah, you were saying that a lot of your work is with the caregivers, and it’s not just about educating them on how to care for this person, who may or may not have reversible symptoms, but it’s also educating them on their own personal self-care. 

Yes 

And their own ability to stay in balance while taking on this role that could last for many, many years.

So I’m sure that for someone with dementia, although, you know, it might sometimes be difficult to discern their experience, you’re finding that they are conscious, and there are ways for you to be able to interpret whether they’re having a, you know as you described, this is like the goal of Zen meditation is to get to some of these states. So there, there’s a potential to have a blissful experience with it, but there’s also, I can imagine, ways that you can measurably see people that are not having a blissful experience with it, and I’m sure that’s very much tied into their caregiver and their experience. 

[00:34:36] Katya:

You know, dementia has stages when a person is first losing their grip on reality. It’s an incredibly terrifying place. Things are changing. Even their senses, all of their senses are changing. Sense of smell, taste, their vision, they become tunnel-visioned. Their field of vision is reduced.

Depth perception is usually lost by mid-stages. They start to lose the ability to see how far something is away and how fast something is coming towards them. So, they may actually still be driving and losing depth perception. I can tell on the road who doesn’t have depth perception by how they’re driving. 

Seriously, especially when I was living in Florida, where there were so many old people. Let me tell you, there were quite a few people on the road without depth perception.

So, when you’re talking about handicaps to your senses, one woman was telling me that in the shower, the water hitting her skin felt like needles hitting her skin. So she was very adamant about not taking a shower, but she couldn’t explain it to people. Just their sense of tactile senses start to change.

The world around them changes their whole perception. They lose the ability to localize their body in space. I mean, we walk into a room. We don’t bump into things. We just kind of automatically, our gyroscope sort of tells us. Where we are in space, we sit down in a chair. We know how far away it is.

They lose that ability where it’s just where they don’t have a connection to the space around them. So then it’s really difficult to physically maneuver them. And they live in fear all the time, especially in those earlier stages. Now that’s the difficult time, and they’re losing control, so they fight for control.

They’ll have arguments and, I mean, over, just over nothing. But they have to be right. They have to be in control. Because they’re losing control, they’re grasping at anything they can control. This becomes incredibly difficult for caregivers. It’s a constant battle with the person. You’re battling with them every day, all day long.

It’s like a bad marriage that never ends. You know? So, of course, they’re going to be exhausted. Not just emotionally but energetically drained. And the person with dementia is exhausted also because they’re having these erratic emotional outbursts and inbursts and feelings, and they have no rationalization to understand what’s happening to them or what’s happening to the person outside of them.

So, as this starts to progress, it’s a very complicated procedure, dementia, as it starts to chip away at certain thinking abilities, rationalizations, emotions, and filters. All of these things become altered. Like I’m writing a new book. It’s called Dementia Inside Out, and it’s an exploration of altered perception.

It’s going to be all about altered perception and how you would live in a world if your senses were altered. Because that’s what people with dementia do, and they can’t live alone. They have to have help because they can’t function in this world if they can’t perceive it in the way that we humans normally perceive this world.

So, it’s fascinating to me. And people with dementia, you mentioned with your son, it was, it’s almost like he has the spirit, you know, Down Syndrome children are just like angels, people just love them, and you hear it over and over again from Down’s parents, they just are so happy they have this child because there’s an energy that they have.

That is just, you just want to hug them, you know? Why? Because that’s their energy, that’s their essence. There’s this purity to them. And how you were saying with your son, where he has that, and I know Cedar, he does have that same energy. He’s got that purity to him that you just want to hug Cedar.

He’s always smiling all the time. So, I understand that. And when I’m with people with dementia, When they’re not under stress, when they’re not in crisis, they have that same exact energy, that, that purity to them as all of this stuff that we think is so important in life is being stripped away. And the only thing that they have that is so strong and never lost is their ability to love and be loved.

And it’s so strong that it doesn’t matter who you are, whether you’re family or somebody who just walked in the door. You’re going to get the same amount of love energy from them, regardless.

And that’s, that is, that’s a gift. So, in the midst of all of this horrible situation that everybody is dealing with, including the person with dementia, there’s the gift.

There’s the gift. And that’s the one thing we came in with when we were born. And that’s the one thing we’re taking with us because nothing else is going with us. We came in full of love and wanting to give love and receive it, and that’s exactly what we’re going to take with us when we go. So maybe getting stripped of all of the illusionary human entrapments is bringing us back to the pure human spirit that we actually all are.

[00:40:24] Jason:

Wow. yeah. I just keep going back to, yeah, how many people I’ve met that just have that they’re not complicated with all of the cognition of contrasts and the judgment of good and evil. 

They’re just like, wow, colors. 

Oh, warmth. How nice. that’s enough. And, yeah, it, it really is a gift, and it’s a gift to be around those people, especially if you’re in the mindset to receive it as a gift and, you know, that brings me to the question, the theme of the show is… 

Give us a brief description of the contrast between what you’ve seen in degenerative situations between people with dementia and their caregivers and regenerative realities that can be experienced or cultivated. 

[00:41:24] Katya:

I’ll tell you a story. Joan. Joan was an extremely strong-willed woman her whole life, and her daughter and she battled since childhood. Her daughter was living in Italy, very happy with her life, and her mother got dementia, and her father had heart problems, so she had to come back. So, I met the daughter, Catherine, when she hired me to do an assessment of her mother.

She wanted me to do an assessment, so I actually lived at their house for two weeks with, and, oh my God. Joan was a fighter. She would fight over everything. She was a controlled person all her life, and now she’s losing control. It was so difficult, and I realized that I’m not a proponent of nursing homes unless there’s no other option.

And for her father, who was the only caregiver in the house, he had heart trouble, and he was getting sicker and sicker with the battle with his wife. So I had said to Catherine, I said I don’t think home caregivers are going to be good. I think you’re going to have to place your mother. And I had learned, in those two weeks that I had grown so fond of Joan.

I loved the fight in her. She was just fighting to stay Joan. And I just saw that as, oh, it was a pain in the ass, but I just loved her for that. And I told her daughter, I said, when she loses that fight, she’ll leave. She’ll be gone. And she never lost that fight, even in the nursing home.

They kicked her out of two. And Catherine hired me to be her advocate just to make sure that she got what she needed. I also worked as an advocate where nursing home residents’ families would hire me to go in several times a week just to make sure they got cared for if they were sick, that they weren’t sitting in dirty diapers, and I couldn’t even begin to tell you things I found.

So anyway, it was a year of spending time with Joan and her daughter and counseling her daughter on how to perceive her mother in a different way, rather than taking all of the troubles she had with her mother from her childhood that she had stuffed. And bringing them into the presence.

I said, your mom is becoming different. She’s in the process of becoming. And I said you’re probably going to find the absolute person that you always wish you had known now. And so we worked on that, and she became Joan’s strongest advocate, man. If I found Joan wet where she hadn’t been changed or something, Catherine would go in and raise hell at the administration. So she started becoming an advocate for her mother. By the time, I’d say, six months before her mother had died, those two were so close, so loving, so unconditionally caring about each other. Catherine’s still in touch with me. Joan has passed and she’s still in touch with me, and she still thanks me.

What I was able to show her, was to shift her perception about her mother and go to that pure spirit that her mother always was, but was just covered up with all of that stuff that we have in life, those opinions, the control issues, all the other things, because those were all stripped away gradually, until the point where Joan was just, she was just this loving, incredible spirit.

And if Catherine hadn’t shifted her perception, she would have missed all that, her mother would have passed, and she would have missed it. She was able to resolve her issues, her lifetime issues with her mother in the last six months of her mother’s life. And as a result, Catherine could go forward with no guilt, with no resentments, and with no residual issues.

That will color her life forever. She was able to work through those. So the regeneration of what happens when these families are brought back together and that they perceive their loved one in a completely different way and they receive the gift from their loved one that their loved one is becoming. They’re becoming their whole gift. 

For me, it’s just a joy. To know that at least I could help one family. I might talk to 200, but I don’t care if one family is helped and changed because of this. And one person with dementia can leave this world not alone anymore. Because when you share love, you’re not alone.

I don’t care where you are, disabled. Sharing love, you are always connected. It’s all worth it to me. It’s all worth it.

[00:46:07] Jason:

That’s a perfect story. Thank you so much, Katya. We are coming to our time here. Is there anything else you want to share about dementia or living or caretaking with our audience before we go? 

I would like to say that we have the rural project. it’s called the Dementia Education for Rural Costa Rica going. Anybody who’s in the country, who would like to volunteer with this project, or to help us to come to your community in some way. We, like I say, we’re out of, we’re out of pocket.

We have no funding for this. There are occasional gifting donations by really nice, generous people. But, we do need a lot of involvement. We function with community involvement, basically. They pretty much help us put it all together. I also have a Dementia Learning Institute that I just put online.

It’s called DementiaLearningInstitute.com. Check it out. I have free, my articles are on there. They’re free, and anybody can read them. Oh, we have a Facebook expat support group on Facebook. and we have a Zoom. There’s a Zoom support group that we’ve created twice a week for caregivers of people with dementia or cognitive decline living in Costa Rica because you have no families you need the support of each other.

 It’s grown to where we have two a week now. Just contact me at kdeluisa@yahoo.com, and I will steer you to the people that you need to know about who needs to know about you. And the Zoom group is really great because, since covid, we learned that Zoom is really a great alternative to getting together when you can’t, you know.

Yeah. Tell us a little bit about theinfinitemind.org. 

[00:47:57] Katya:

Theinfinitemind.org was started before covid. It’s the Infinite Mind Dementia Project. It’s still the Rural Project within The Infinite Mind and theinfinitemind.org. You can go on there and see the projects that we were hoping to get off the ground. There’s still, you know, there’s still seeds that are waiting to sprout.

And it’s in Spanish and English. The Dementia Learning Institute is only in English right now. But you can get it in Spanish or English. you can actually give it to your neighbors or anybody that you know in the country that has dementia and that they’re dealing with this, and they can go on there. There’s a lot of information. 

Oh, and internationally, I’ve started a coaching business. people can interact with me directly, and I can help them with their individual situations. 

On The Infinite Mind, there’s a little bit about it, but on Dementia Learning Institute, I have a section on the coaching. So, they’ll learn about it there. So it’s dementialearninginstitute.com, and, hopefully, that will be off and running with workshops and a lot of YouTube information available to people on that site within the next, this year, hopefully.

There’s a lot to be done. There’s so much to be done. 

[00:49:23] Jason:

Always,

[00:49:25] Katya:

Yeah. 

[00:49:28] Jason:

Until we get dementia and then we don’t have that thought anymore. 

[00:49:31] Katya:

Actually, if you cared for properly, you’re a happy camper towards those last stages. It’s like, oh, you’re living in the moment. You’re just everything, whatever. If the moment is a beautiful place, you’re perfectly happy. If the moment is a beautiful place. So, yeah. 

[00:49:49] Jason: Katya, I’m really, really genuinely so grateful you came to me with this. It’s one of those things in our society, in our lives, that countless people are dealing with and even struggling with. And it’s one of those silent struggles. A lot of people don’t talk about it. They just accept the burden, or the, maybe, burden isn’t the best way to describe it.

But, for some, maybe it is. And they accept it, and they do it silently, and a lot of these caregivers, I’m sure, are just locked inside of their own homes being 24/7 care. Maybe they don’t have respite. They don’t have someone else to help them sometimes. And so beyond the people that are… I won’t necessarily blanket statement about suffering from dementia, but or at least having to live with dementia, there’s double that population, at least that are these caregivers that need as much or more support than the people with dementia themselves and the work that you’re doing to educate, bring awareness, encourage people to come forward with their stories and their need for assistance, and working with the national institutes to help them, encourage them to bring more public awareness and resources to people.

It’s a tremendous gift and blessing that you’re offering the world. I commend you, and I’m really grateful to be able to share what you’re doing on the podcast here. Hopefully, some listeners will find refuge in what you have to offer. 

[00:51:26] Katya:

Thank you so much for having me. I really appreciate getting the word out. 

[00:51:31] Jason:

Okay. Well, I’m going to include links to everything you’ve talked about in the show notes. And, I hope you get some contacts from some people listening to this so that you can support them on their way.

[00:51:42] Katya:

I hope so. Thank you, Jason.

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