THINKWELL

AGEWELL

A 22-Year Alzheimer’s Journey That Changed Everything

00:00:00:00 – 00:00:29:06
Unknown
What’s worse than false hope is false hopelessness. And there’s way too much false hopelessness. And I think realistic hope is that we can provide, an environment and activities, and good nutrition and, and all that. You know, the factors that we’ve been discussing, the most of those factors that can result in more good days and bad days, it will slow down, decline.

00:00:29:12 – 00:00:48:23
Unknown
I think that’s very possible and probable. They’re going to definitely have a better outcome. I think all of these are realistic and we can expect that and we can strive towards that. It is even possible that we can go beyond that.

00:00:49:01 – 00:01:15:07
Unknown
Welcome back to the Think Well Agewell podcast. I am your host, doctor Heather Sanderson. Today I have the pleasure of welcoming someone whose life reads like the blueprint for what integrative, person centered dementia care can look like if we truly embrace our human potential. Del Museo is a wellness consultant with over 40 years of experience in health and performance, and in whole person transformation.

00:01:15:09 – 00:01:43:12
Unknown
His career has taken him from ski coaching and outward bound instruction to guiding international adventure travel, directing the health center at the Aspen Institute, creating wellness retreats and teaching anywhere from California to British Columbia. But Del’s most profound work emerged not on a mountain top lodge or in an executive conference center, but unfolded in the day to day, often gritty grind and reality of caring for his mother, Dorothea.

00:01:43:13 – 00:02:15:10
Unknown
She developed dementia in the late 19 is and drawing on his lifetime of training and wellness and whole brain learning, movement, integrative health, connection with nature and human resilience and transformation. Del developed what became the Integrative Cognitive Wellbeing Program, or ICW program, a multi-modal protocol that you know, I think everyone who knows what I’m about in terms of multimodal interventions is as kind of used through the Bredesen protocol.

00:02:15:12 – 00:02:47:17
Unknown
You’ll see immediately why I’m so excited to have del here sharing his story as a care partner for Dorothea. And of course, Dorothea’s story of stabilizing not only stabilizing but improving her cognition, her mobility, her posture got better. She regained old skills like playing the piano, and she lived vibrantly and independently into her 100th year. She had a 22 year journey at the symptomatic level of Alzheimer’s disease, and this is virtually unprecedented.

00:02:47:18 – 00:03:11:23
Unknown
We do not hear about this, and I was just sharing with del before we hit record that I had thought of Judy Benjamin, who I’ve interviewed here on the podcast as Patient Zero. But Dorothea was actually getting the benefits of this before Doctor Bredesen was talking about this. And so I think she’s one of the very first long term multi-modal dementia interventions ever recorded.

00:03:12:01 – 00:03:37:03
Unknown
And Del’s book, Up and Down and even sideways, captures this remarkable journey with honesty and rigor and deep humanity. It’s reading it. It’s both a love letter and this blueprint and these directions for what can be possible. So today, del is teaching and consulting and mentoring others who are seeking a better path for dementia care. And I am absolutely thrilled to have him here today.

00:03:37:03 – 00:04:04:17
Unknown
Welcome, del. I feel very honored to be here. I want to start with just your origin story, because many adult children fall into this role of caregiving and they bring themselves to it, right? The good, the bad, the ugly, the indifferent. And I’m curious. Your background is impressive with the skiing and wilderness leadership and wellness education, meditation, your Zen experience living in a Zen center for a couple of years.

00:04:04:17 – 00:04:32:01
Unknown
How did these things kind of come together to prepare you for the challenge of caring for your mother? I think it was more serendipitous than any. It wasn’t planned that way. So sometimes I think of myself as if you remember there is a movie. A number of years ago, it was called, Forrest Gump, and Forrest Gump just happened to end up at the right place, at the right time.

00:04:32:03 – 00:04:53:21
Unknown
And I would say that’s probably my life’s journey. I just sort of stumbled upon the right place at the right time, connecting with the right people. And it was just from one thing to another and wasn’t it wasn’t a song from the beginning with just one small get this way.

00:04:53:23 – 00:05:21:09
Unknown
So you I mean, you graduate from one of the first wilderness or. Excuse me, wellness education programs. You also have, I think, said wilderness a training wilderness health training as well. But the wellness education programs early on, and I’m curious, you know, that that whole with Instagram and Facebook and all the social media and the coaches out there, I mean, you were the you were thinking about wellness well before it was all over social media.

00:05:21:09 – 00:05:48:15
Unknown
And I’m curious how you’ve kind of seen that evolve over the past several decades. Well, it certainly has evolved. My first exposure was in the late 70s, early 80s. And I look back at some of the, the beliefs we had and our understanding of health and wellness back then. And it has come a long way. I think it’s much more realistic now.

00:05:48:15 – 00:06:11:13
Unknown
I think the modalities are more effective. It’s more grounded, but it had to start somewhere. And in those early years, it was, you know, these people that were my teachers and they were pioneers, and there was no path to follow. They were they were, found drinking. I just kind of followed behind and I mean, just went.

00:06:11:15 – 00:06:32:23
Unknown
I’m case I meditate daily. It’s a big part of my life. I am so just fascinated that you’ve spent a couple years living in a Zen center. And you mentioned in the book that this really had an impact on you throughout your life. Would you expand on that? It was a it was a pretty deep experience. I actually had a meditation path before that.

00:06:32:23 – 00:07:05:15
Unknown
If I was to look at someone who is destined to be a, a caregiver. I would not be that person. And if I look at someone who was destined to have a meditation, I wouldn’t be that person either. The reason that I actually got interested in meditation was when I was in competition. And oh, what competition? When I was competing in skiing, I was, it was back in the early days of freestyle skiing, and I was competing in the moguls and the, you know, pro mogul tour and all that.

00:07:05:15 – 00:07:34:22
Unknown
And there was a competitor who was very, very good, and he was a friend of mine. And I was like, you were in the UK? And one day we were just chatting and he was asking, you know, how is just so chill all the time. Must tell me that he had this meditation practice and it actually helped him especially, you know, when he’s in the starting gate, we have butterflies and they come on up and you can just kind of come in and then be ready to come.

00:07:35:00 – 00:08:07:15
Unknown
And, this could be really helpful. And that’s why I got into meditation. It wasn’t for personal transformation or spiritual growth. It was just so I could compete. And and then I found that, well, actually, how to connect to, the rest of my life as well. So I’d already been doing that for a while. I was overseas back in the mid 1980s, and actually had an experience in the, with my wife, and I stumbled upon the Dalai Lama monastery and, and that started a whole chain of events as well.

00:08:07:15 – 00:08:29:22
Unknown
So I was already interested in pursuing that, a little bit more seriously. And the opportunity, came about in 1988 and I became involved with, with San Francisco Zen Center. I did it to Green Gulch Farm. I wouldn’t mere beach, and it was, it was a very, very enriching experience. And that still is with me.

00:08:30:01 – 00:08:31:22
Unknown
That was part of my life.

00:08:32:00 – 00:08:34:05
Unknown
How did it impact your life as a caregiver?

00:08:34:08 – 00:08:53:21
Unknown
I wish it impacted my life a lot more than it did. You know, I wish that I could have been, calmer and more patient and patience is not one of my virtues, but I’m working on it. But there were times when it would. And there were times when the things came crashing down, and it was pretty stressful.

00:08:53:21 – 00:09:15:11
Unknown
And the meditation practice really helped get me through it. So imagine that if you didn’t have the meditation practice, that you hadn’t had the deep experience at the Zen Center or with the Dalai Lama, or, you know, any of these litany of experiences that you accumulated over the years that you would have been less patient as a care partner, that, you know, there would have been more frustrations.

00:09:15:11 – 00:09:40:21
Unknown
It would have, you know, things would have bubbled over more frequently, and it would have been an even less joyful, connected experience. Yes. Yes, certainly. So I think we’re all on the journey, right, of of planning to be more patient, more tolerant, more compassionate, and, and yet every dose helps. At what point did you think, you know, do I want to get into this story?

00:09:40:23 – 00:09:59:15
Unknown
But I’m curious at what point did you sort of perspective on her treatment, on her care shift, where you went from thinking, okay, the conventional medicine is what we’re going to do. We’re going to get this diagnosis go through the process there. When did you like flip the switch on that and go, okay, we need to design something completely different.

00:09:59:17 – 00:10:23:14
Unknown
I was probably, quite early on. But at that point I was living about 10,000 miles away from her. So it only be when I, be home for, you know, either vacation or visit the family or spend time with her. So I wasn’t I wasn’t on the scene full time, but I could see what was happening.

00:10:23:14 – 00:10:59:15
Unknown
I was aware of the options, and I wasn’t really impressed with the options that were available. I didn’t really like the prognosis. And it was in about 2007 that it really became clear that I, I found that the, the prognosis that she got was it was very depressing. It was very negative. And in other aspects of health and wellness, I had seen healing and breakthroughs and people getting better.

00:10:59:15 – 00:11:24:08
Unknown
And I saw no reason why this couldn’t be the same. Even with Alzheimer’s and with dementia. I didn’t know that it could be, but I really had a hunch that it could and that we could do better than that. So it would have been, I think, around around 2008 when it really became clear. Also, at that point, there were discussions about her going into residential care.

00:11:24:08 – 00:11:45:08
Unknown
And when I saw how bad residential care was, really didn’t want her to have to be in that environment. It turned out she did go in and we had to make the best of that. And then when that happened, it became really clear not what was out there just was not working. And there had to be a better way.

00:11:45:10 – 00:12:14:08
Unknown
You described right the as resilient and adaptable and really a glass half full optimist from really from childhood. Right. Where you know, from childhood. How do you think her life story shaped her trajectory with dementia? Well, I think her her life story dramatically shifted her direction and her ability to weather the Alzheimer’s journey a little better than than some people.

00:12:14:08 – 00:12:34:02
Unknown
First of all, she knew that she could do things, and, she had succeeded many times in her life. And so there was that knowingness. I think it’s important to have that and that, you know, takes me back to my Outward Bound days. And that’s what her Outward Bound is all about, was that we have a lot of limitations.

00:12:34:04 – 00:12:59:13
Unknown
Most of them are self-imposed limitations, and we try to navigate through life inside those limitations until we discover that we can go way beyond that, and we can do way more than we ever imagined we could. And for her, she was already pushing those boundaries. Part of it was just the way she was, who she was as a person.

00:12:59:14 – 00:13:39:18
Unknown
Part of it was circumstance. Like she had to, But I think that was a big part of it. She was pretty optimistic person, generally. I think that’s really helpful. She was open minded, and she was open minded. Minded and learned at the same time. Her being learned, of course, really helped her because that helped her develop, pretty high level of cognitive reserve, you know, right at right from the very beginning of her Alzheimer’s journey, like she came into it like, with, you know, the, the fuel tank for and that was that was really helped.

00:13:39:20 – 00:14:01:18
Unknown
So that was another part of it. And I think since she was young and it was just, you know, part of her story as she was growing up, she had to be adaptable. And she got really good at being adaptable. And it wasn’t being adaptable and just struggling through the changes. It was like, okay, well, this is what we’re doing now.

00:14:01:18 – 00:14:32:17
Unknown
And just she would just step into it, you know, with, you know, full force. And so having that ability to, to adjust and adapt to situations has stayed unfolded. I think was something that that helped her as she was going through all these changes with dementia as well. So I think say that, yeah, we hear there are these characteristics fit a certain personality types basically do better with these multimodal interventions.

00:14:32:17 – 00:14:55:18
Unknown
And certainly with my experience in the applying the Bredesen protocol, it’s like that commitment, that determination, that sense of hope, that adaptability, that willingness to change the lifelong learners. It’s it’s sometimes like the type A, you know, like, all right, I’m going to figure this out and get this done. I’m not going to accept no for an answer kind of person.

00:14:55:20 – 00:15:25:11
Unknown
Those people really seem to get the most benefit out of this. And my my hope is that, you know, this translates into supporting people who don’t just have that personality type. Right, that that we can help other people by creating memory care or long term care, environments that are very supportive that we do this by that we do sort of the interventions that we’re we’re going to talk about here by default rather than as the exception.

00:15:25:13 – 00:15:52:17
Unknown
And I think that it takes these early adopters, people like Dorothea and some of the other survivors of Alzheimer’s, to show these stories, to inspire others so that it can expand beyond this, this group of incredible women. Well, you talk me through dorothea’s day to day life at the early stages. How did you first know that there were memory changes going on, and then through the arc of her story and get to the last quarter of her life?

00:15:52:17 – 00:16:14:13
Unknown
What did her daily routine look like? Not not the intervention so much, but like, how is her memory affected? What were the deficits like? What were the challenges? And then and then like as you implemented the intervention, did things get better? Like what did you notice? I know the mini mental status exam that went up, but I want people to kind of paint a picture for people what her life was like.

00:16:14:14 – 00:16:37:02
Unknown
Well, you know, prior to the first signs of dementia, she was pretty sharp person. And, and, you know, she had a very, very good memory, very organized. And she was just, you know, she was an active person who, she lived alone in a in a very big house, but she had no friends.

00:16:37:07 – 00:16:56:01
Unknown
She had a pretty good social life. She was still taking classes and going to seminars and going on adventures where she. She was traveling, around the world, up until I think it would have been. I’m just trying to think of. Yeah, it would have been even into the very beginning of the first signs of dementia at that.

00:16:56:03 – 00:17:20:13
Unknown
So. So she had that, but she was just an active person. So it became noticeable was she started to forget things. Worse, she get more confused. Bills didn’t get paid, things didn’t get done. That was very out of character for her. And so this would have been around 1997 or so, is when it became noticeable to her family.

00:17:20:14 – 00:17:47:13
Unknown
And then it became quite noticeable in 1998. So, it was, you know, it was just that she, she wasn’t as sharp. She couldn’t remember. She couldn’t organize herself as well. And the and the confusion that that started to increase. So that’s, that’s how it began. She was able to live on her own again by herself in a big house for another.

00:17:47:16 – 00:18:16:15
Unknown
Let’s see if I’ve got this right. I think it was another 2 or 3 years after that. So that would have taken us till about, 2003. And then, the family, you know, we would be discussing her, her progress or decline and what we needed to do next. And the decision was made. Yet she had insisted she wanted to stay in her own home.

00:18:16:17 – 00:18:40:08
Unknown
So we split the home with the upper floor being her world. And then the lower level. We had transformed into a quite a nice large apartment. And then, it started with her. Her granddaughter moved in and her husband and and they, were her care partners to begin with. And that was the first couple of years.

00:18:40:08 – 00:19:03:12
Unknown
And then, we had an actual, you know, caregiver come in after that. So she was able to continue staying in her home, even though it’s just the upper part of her home for another four years. But what happened was that, you know, near the beginning, she could be left for six, eight, ten hours on her own, and she’d be fine.

00:19:03:14 – 00:19:25:07
Unknown
And then that became four hours and three hours and then two hours. And then it got to the point where she couldn’t really leave her much more than an hour at a time because she’d get into mischief and mischief is, is a word that most people that knew her would use quite readily, because that was what her life is all about from that point on, was getting into mischief.

00:19:25:07 – 00:20:06:22
Unknown
And she would get into, all kinds of little misadventures and sometimes have to be rescued by the neighbors. And so it was it was getting a little bit more hazardous. And, and there was mood swings and there were, you know, there were difficult periods that began to happen more frequently. And, then as things were going downhill, it required, more and more caregiving hours and as, as most, everyone who’s in this world of taking care of somebody with dementia, we know how expensive that can become, and it can become thousands of dollars every month.

00:20:07:00 – 00:20:37:20
Unknown
And it just kept growing and growing. And eventually, things kind of deteriorated. And, she got taken out of her home against her will. And, then she was put in a residential care facility, and then things really plummeted that I know that you learned a lot about the environmental impact, the emotional stress and what it that I think her her scores even plummeted when she was with that community.

00:20:37:20 – 00:21:00:02
Unknown
What did it reveal to you about this system? And was she in Canada? Where, where wish. Yes. Yes she was. This is in Canada. What did you learn about that system? Well, in a nutshell, what I learned is that system is in need of some upgrading and repair. It’s it’s a work in progress. And there’s, lots of improvement needed.

00:21:00:04 – 00:21:22:07
Unknown
I guess that would help me. It was not the best environment for someone who is still relatively healthy. Yeah. Yes. To. Well, what do you think it was? Do you think it was the food? Do you think it was the way she was treated? Do you think it was the lack of exercise, or that there were TVs everywhere?

00:21:22:08 – 00:21:43:05
Unknown
Was a distraction? Like, was there something specific that you think really didn’t suit her, or is it just more vague in general? No. I think there were very specific things. First of all, you know, she lived in what was a 3000 square foot house, but after we split it, I think her world was about 1500 square feet.

00:21:43:05 – 00:22:08:04
Unknown
Her yard had a huge yard. It was like a park. She had all her neighbors. She had her organic garden that she tended. She had all kinds of projects on the go. And she had an active life in the late the later years. And all of that was taken away. And then her world became this very generic, sterile little tiny room.

00:22:08:04 – 00:22:32:00
Unknown
So she went from 1500 square feet down to, I think it was something like 230ft². It was really small, a little single bed. It was like smaller than a motel room. I used to say it was like a prison cell. It wasn’t that bad, but it was really tiny. So I think the fact that her life had been condensed down to this little room, that was a huge factor for some people.

00:22:32:02 – 00:22:51:11
Unknown
It doesn’t seem to be that big an issue for her. It was a huge issue, and I met other people within that facility, and they were going through the same thing because they were coming from a home that felt really good. That was their home they had created the space that was theirs, and now they’re in something very generic.

00:22:51:13 – 00:23:11:12
Unknown
So that was that was a first part of it. Life was a more regulated. When she was at home. She got up when she felt like it. And in this facility, at least at that time, in the early years, they all had to get up around the same time, you see, a little earlier than she was accustomed to, they’d be put to bed early in the evening.

00:23:11:14 – 00:23:33:02
Unknown
She’s not an early evening person. She used to stay up till 10:00 and couldn’t understand why anybody would go to bed early. But, you know, the whole place is basically shut down. All her friends were a sound asleep. There wasn’t anybody to do anything with. And so she’d be just back in her room, just hanging out. And so in that way, it was quite lifeless.

00:23:33:03 – 00:23:56:09
Unknown
There were some recreation programs. Most of them were not very good. They tended to be more directed to the lowest common denominator, which would be the people who were really struggling, like maybe not at her level of ability and cognition. So everything would be kind of dumbed down, at least in her eyes. And so that was really frustrating because she felt like she was being treated like a child.

00:23:56:09 – 00:24:18:03
Unknown
And of course, for her that would be something she was very resistant to. The food was it was mediocre traditional food at the very beginning, all of her like so all of the really good healthy food she was getting that was taken away. And then plus all the helpful supplements that she was on that was taken away. So she, she, she lost in whatever benefits she was getting from that.

00:24:18:03 – 00:24:38:05
Unknown
And then she was of course, separated from her family. At the, at the very beginning, there was this practice at this one facility where they wanted the people to get accustomed to living there. So they didn’t want any family visits for weeks on end. I didn’t really accept that. So I kind of snuck in, and that was a good thing.

00:24:38:07 – 00:25:01:10
Unknown
But, you know, hopefully that practice has changed. But even after that, her family visits would be, you know, a few hours here or there, now, fortunately, her, her family were near enough that everybody could visit at least once or twice a week. So, again, in her case, she had a family visit seven days a week.

00:25:01:12 – 00:25:32:15
Unknown
Her fellow residents, they’d be lucky if they saw their family once a week. So it can be really a lonely experience, too. They also never really got to be outside, and as she was no door person, she loved nature. She loved to be outdoors. But, you know, because of safety parameters and they didn’t have enough staff to supervise the, the residents if they decided to go out into one of the courtyards or, you know, somewhere that was interesting, they couldn’t let them do that because there wasn’t anybody to accompanying them.

00:25:32:17 – 00:25:53:05
Unknown
So is a very contained life. It was a secured unit, so she couldn’t even get out of the unit. And she’s kind of a free range kind of person. So that worked against her, too. So I think all of those things, and the main thing was the lack of stimulation. Dorothea’s story is a happy, hopeful one. So I want to switch gears here.

00:25:53:05 – 00:26:16:01
Unknown
Yes, you into that, but I think it’s good to paint this picture because I think a lot of people listening can relate to this, right? Of a mom goes into this facility in a locked unit and the food isn’t good. There’s not the right type of stimulation. She’s not interested. It’s not her. And she goes downhill. And so let’s switch to the part where it gets better.

00:26:16:02 – 00:26:39:21
Unknown
Okay? You eventually created the IC program, which, you know, predates all of these other multimodal dementia protocols. Walk us through that, like the early components. Like what was part of this was that nutrition, the nature, the supplements getting back in there, like what started her turnaround, what did you do? It was many things. There were ten. It was a ten part, program.

00:26:39:21 – 00:27:04:07
Unknown
Again, I did not know what I was doing. What was so surprising and delightful to me was in 2014, when I learned about the work that a doctor, Dale Brodersen, was doing, and I looked at the program and it was so similar to what I’d been doing, and that was the first time that I realized, so maybe I am on the right track because I really didn’t know if this stuff would work.

00:27:04:09 – 00:27:21:01
Unknown
It was like everything that I had learned over the years, I just I just threw at this like that, threw the kitchen sink at it. Well, I can tell you that the ten parts of the program and what we did, the first part, you know, you know, again, this is really this kindergarten compared to what you’re doing.

00:27:21:01 – 00:27:53:05
Unknown
But the first thing was to remove her from further harm. And when I refer to that, I mean, removing toxins, allergens, you know, hazards, exposures. And this kind of went way back to, oh, my outward bound is in my, wilderness leadership days and, you know, first-aid and all that. You know, what we learned was, if we come upon an accident scene, the first thing we want to do, we assess the situation, of course.

00:27:53:07 – 00:28:19:07
Unknown
And if we see that there is danger, it’s imminent. It’s right there and it’s continuing. It doesn’t do a whole lot of good to start applying first aid. If they’re still in contact with a 240 volt electrical line, the first thing you got to do is remove the lines to remove the danger. So that’s what I referred to, with removing from further harm.

00:28:19:09 – 00:28:40:16
Unknown
And in this case, the further harm would be if there was a toxic exposure, which I suspected there. There could have been it turned out there was. And are there things she’s allergic to? And in her case, it was food allergens and just other, other hazards, other exposures that could be detrimental to her going forward. So before we start, we’re able to really start anything else.

00:28:40:16 – 00:29:03:10
Unknown
We just had to take care of that. Then the second thing was the remediation. So that would have been like she was on a very gentle, but it was a detoxing program just so, especially with her gut and all that pathogens were removed. You know, if there weren’t, might micro toxins, we would do what we could to remove those.

00:29:03:10 – 00:29:25:20
Unknown
And just introducing like clean air water, you know, if emfs were an issue, were you removing that? It turned out they weren’t really an issue for her, but they can be for some people. But just taking care of what? Whatever that toxic load was. And then once that was done, then the third phase was restoring and rebalancing the gut.

00:29:25:20 – 00:29:51:00
Unknown
In her case, because, she had a very severe gluten intolerance. There was damage to her digestive system and to her gut. And so there were there were pathogens. There was all kinds of the wrong kind of bacteria. And she was not quite celiac, but extremely gluten intolerant. So there had been damage to the VI in her lower digestive tract.

00:29:51:00 – 00:30:15:05
Unknown
And so all of that needed to be healed. And of course, the primary way of doing that was to put her on a gluten free diet, which, incidentally, both of her doctors, she had a really good medical doctor, and she had a really, really good, naturopathic doctor. And both doctors in tandem worked on that in partnership with the facility and the dietician.

00:30:15:05 – 00:30:45:16
Unknown
And the facility was wonderful. And it was like almost instant. It was within 24 hours she was gluten free, and it stayed that way for the next, I don’t know how many eight years or whatever. And that was that was a dramatic change. So I will finish the list here, but I just wanted to just kind of interject for a minute with what happened with the removing gluten that, that measure in itself made a noticeable difference and made a difference in her cognition.

00:30:45:16 – 00:31:06:21
Unknown
Her, test scores went up. It made a difference in her abilities, and it made a difference in her mood. And she didn’t have as many of the mood swings. And it made a huge difference in her body. Prior to that, people thought that she was gaining weight and she actually had a waste of 44in, which is pretty big for somebody who’s not even five feet tall.

00:31:06:21 – 00:31:27:16
Unknown
And within three weeks of going gluten free, that 44 inch waist went down to 39in, and she could get back into her clothes again. And so, you know, that’s kind of nice to be able to wear her clothes that she liked. And she was happy with that. But that’s also an indication that there was something helpful that was happening.

00:31:27:21 – 00:31:49:13
Unknown
So that was just one little move, you know, one little factor. But that factor, that one did make a really big difference. So just getting back to the list here. Sorry. So the next thing would have been once her gut was was healed and she could digest her food and assimilate her nutrients, then it was getting the right nutrients into her.

00:31:49:13 – 00:32:11:23
Unknown
So it was like really upping the quality of her nutrition. More whole foods, more locally sourced fresh food and just being really careful with that. Then, I’ll just mention we weren’t able to go ketogenic with her at that time, but there were some meals that she would have that were they were close to being, you know, a keto meal.

00:32:11:23 – 00:32:34:12
Unknown
And she was taking, exogenous, ketones as well. And then getting into the supplementation, you know, with prudent, careful supplementation. And that was, you know, working along side her naturopathy doctor and, and her medical doctor, they knew what she was taking. And there’s a little story that goes with that. I don’t know if we’ll have time that I can tell you about that too.

00:32:34:12 – 00:33:06:07
Unknown
And then she got a whole body exercise. And when I refer to whole body exercise, it’s everything from aerobic exercise to, resistance. And in, in, in her case, that would have been with hand weight and increasing the resistance over time and dual purpose exercises where she would be doing one thing with part of her body and another thing with the other part of her body, or she might be on her exercise bike and she might be counting to 180 or something like that.

00:33:06:09 – 00:33:30:08
Unknown
She did these exercises that were called cross crawl exercises where we’re crossing the midline. And that was something I learned way back in my ski coaching days. She did. Neal creative movement tights. She’d on a very basic level, she did some aikido moves. We would have these sticks with sort of banners that, that she would be able to do lots of, you know, creative movement with.

00:33:30:14 – 00:33:45:11
Unknown
But then she’d get that whole body movement and she enjoyed that too. And we do it to music and she, she like that. So and then of course she was a walker and we would go on long walks in nature and then the, the next, this would have been the seventh thing was the mental stimulation that hugely important.

00:33:45:11 – 00:34:22:16
Unknown
And it was challenging her brain and in many different ways, and increasing creativity and working towards, you know, developing neuroplasticity. And then of course, I had mentioned the living environment. Well, one of the, the breakthroughs, there were two huge breakthroughs in her life at this point when it took, you know, it took a lot of pushing on my part, but I was able to get her home and it you know, it started out that she could come home 3 or 4 days a week for a few hours each day and a couple times a month she could come home and and spend the night, and it would be an overnight.

00:34:22:16 – 00:34:43:15
Unknown
So it would actually be two full days with an overnight in between. And she did so well that eventually I was able to, to get like, permission so she could come home once every ten days and come home for one of these extended weekends where she we would I’d pick her up right after lunch from the facility.

00:34:43:17 – 00:35:11:12
Unknown
We’d come home and she would not return until bedtime the following day. And that whole time she’d be in her home. Well, she would just be in her home. She’d be all over the community doing stuff. And that was a huge, huge part of it. And then the other thing was trying to recreate some of the her favorite, elements from her home into her little room in, in the, residential care center that also made a difference.

00:35:11:16 – 00:35:35:02
Unknown
So we replicated her colors because it just, you know, was like this generic olive green and beige. And her colors were sky blue. So everything that could go into sky blue became sky blue. So the bedspread, you know, the curtains, everything that we could bring in that was blue. We brought in some of her furniture, her plants.

00:35:35:03 – 00:35:58:01
Unknown
I set up a big screen TV with, with a sound system, and she enjoyed that. And just tried to. And we set up like a, like a, like, sort of a little project station. And she had a table in her room, and so there’d be little projects, like she’d have a writing project and she’d have an art project or something she was building.

00:35:58:03 – 00:36:16:21
Unknown
So she’d have something creative that she could be doing there. And then the other part of it was that making sure that she got really good restorative sleep, which was pretty easy for her. She she just happened to be one of these lucky people that sleeps well. And then the final thing was introducing some new technologies.

00:36:16:23 – 00:36:50:19
Unknown
And so that would have been like the, the 40Hz, sound, 40Hz slate, the the the the gamma cadence. And in light and sound, also gamma and theta frequencies, the near infrared, the light radiation sort of set up a, sort of a total immersion experience for her, where some of those were combined and there had been some studies done at the, was the Bay Crest Medical Center in, Toronto and Ontario, Canada, and also involved with this.

00:36:50:21 – 00:37:17:06
Unknown
And they had developed a special chair. And the chair was impregnated with these speakers that could actually replicate, 40Hz sound waves. And the chair would it was so impregnated that when they would, would turn up the volume on this 40Hz music, the vibration would actually go through the chair. So it wasn’t just that they were hearing the music, they were feeling the music through their body.

00:37:17:08 – 00:37:38:17
Unknown
And I thought, what a great idea. So she had this favorite chair in her bedroom. And, I didn’t tell her I was doing this, but I gutted the chair from the inside out and fastened some really big speakers that could do 40Hz and, and then had surround speakers around her. And then in front of her was a big TV screen.

00:37:38:17 – 00:38:00:16
Unknown
And there was, there was the 40Hz flashing light, which she didn’t like. So that was impregnated inside the sort of kaleidoscope. And it was beautiful. She loved watching that. And then she wouldn’t even notice the flashing. And then, and then we’d have the, the 40Hz sound, and it would just be this just, you know, a soothing meditation experience for her.

00:38:00:21 – 00:38:23:08
Unknown
But she was getting it from all directions. She was feeling it, she was hearing it, she was seeing it, and I, I can’t quantify how effective it was, but I do know that she was noticeably more clear afterwards. So I have so many questions. And first of all, where did you how did you discover all this? Were you reading scientific papers like hot off the press?

00:38:23:10 – 00:38:49:09
Unknown
How did you like the thought of someone getting into ketosis for cognitive function in 2007, 2009? I, I didn’t even know people knew about it at that stage. The 40Hz, I mean, a lot of these pieces, are things that we know now, but people did not know then. So I’m curious about that. And then I’m also curious, did you end up moving there and walking, being her care partner?

00:38:49:09 – 00:39:10:23
Unknown
Day to day? Like who was responsible for making sure she got in the chair and did all got the exercise that her diet was right. And when she was at home, what had her memory improved so much that she was able to stay out of mischief? No, no, it’s never stopped. Even she probably. Yeah, she probably got into more mischief because she had more energy and she knew she could get away with it.

00:39:11:04 – 00:39:38:08
Unknown
And that’s the first part of your question was, you know, how did I learn about some of this stuff? I tend to be kind of a research junkie, so yes, I would. I was looking into everything that came out on a daily basis, probably. I don’t want to exaggerate, but I think it was pretty close. I probably spent at least two hours every day, like five days a week at least, just doing research every day.

00:39:38:10 – 00:40:15:10
Unknown
And these things would come up in the library and all that, some of some modalities I’d already known about. And I, you know, just just to be clear, I didn’t do all of this in 2009. This was a progression. There were some things that started then and, you know, and some things followed later. The exogenous ketones, I believe, was in oh, I think it was about 2011, and it was because I was reading about Doctor Mary Newport and, and her work, and that really made sense.

00:40:15:10 – 00:40:36:05
Unknown
And then the more I looked into it, I thought, well, yeah, there could be something to this so that, you know, I just went with that. And then, and then I learned later about, getting on to, ketogenic diet, but but we couldn’t do it because most of her time was still in the residential, care facility.

00:40:36:07 – 00:40:55:16
Unknown
Was I there every day with her? No, I had two siblings, and they would come in and take her on outings and stuff. So she still got that when I wasn’t there. But, it would have been about four days a week that I was with her. And in those days, of course, just about every one of those days, she would come home.

00:40:55:16 – 00:41:24:03
Unknown
She wouldn’t necessarily be home all day and through the evening. But, you know, she would come home in the early afternoon, sometimes in late morning, and then she would return, usually just at bedtime, just to get her, get her tucked into bed and she’d go to sleep. And so her functional day was with me. And in her own home then, but she was still living in the residential care facility, and we couldn’t take her out, like, all the time.

00:41:24:03 – 00:41:43:16
Unknown
Like there. She needed to spend time there. That this, you know, part of the arrangement. The other thing was she did have friends there, and occasionally there’d be activities that she’d really enjoy and she’d take part in those. So I didn’t want to take her away from anything that she’d enjoy being there. And those things were helpful, too.

00:41:43:18 – 00:42:08:12
Unknown
So I wouldn’t want to say that her experience there was all negative, and there was some really, really wonderful care aides, nurses, management staff, really, really good people that really cared about her. And they were doing their best. But just the system itself didn’t lend itself to, you know, or optimized. But it certainly sounds like you, you know, on the spectrum of communities.

00:42:08:17 – 00:42:27:21
Unknown
You had a very responsive nutritionist, somebody who was really responsive in the kitchen, willing to make these gluten free meals. There were people that once you articulated what you wanted to do and what was important to you, to Dorothea and your family, they were willing to execute and really work with you rather than fight you on it, which is huge.

00:42:27:21 – 00:42:51:07
Unknown
I don’t think everyone runs into that. But, you know, certainly part of what made it work now you discover it essentially is like what you describe is that she had a severe gluten sensitivity allergy, maybe even celiac. I’m not sure if you ever discovered exactly what that was, but that was having a big impact on not just the circumference of her waist, but probably her inflaming her brain, her skin, you know, of course, her gut.

00:42:51:08 – 00:43:17:09
Unknown
And after removing that, that, that sort of had this outsized impact, it sounds like also the environment. And getting her back home made a big impact in her mental status in her in her cognitive status. But I think that you also in the book, at least you emphasize that there’s not a single intervention that did the trick. Maybe there was some that had a bigger impact, but it’s really about the synergy of all of them coming together.

00:43:17:09 – 00:43:43:14
Unknown
To talk a little bit about the importance of a multimodal intervention and and on how that impacts neuroplasticity. I think part of the reason I’m selfishly asking you to do that is because I think so many people are looking for that silver bullet when the way Doctor Peterson describes it, it’s a silver buckshot, right? It’s like much as possible and that is overwhelming for a lot of people.

00:43:43:15 – 00:44:10:18
Unknown
And how help kind of like now help us navigate that. I wish there was an easy solution to like for myself. It was, you know, it was a, an all encompassing, challenge. It was a it was a big task, and I wouldn’t wish that on someone else. It’s it’s a lot for one person to have to do.

00:44:10:18 – 00:44:35:08
Unknown
I was fortunate in that I was able to be there and to do it. But, it really does take a village. And that’s what I’d like to see more of, you know, where is you know, it’s integrated program, but also an integrated team that can work together on, on something like that. And, I’m hoping that in the future that, that could be more of a possibility.

00:44:35:08 – 00:45:03:07
Unknown
And that’s what I’m really campaigning for. In her case, I would I would most definitely say it was everything rather than 1 or 2 things. It was the synergy and the that and the word synergy. I think. I think most people know what that means. Do you want me to do okay, so I guess the easiest way to describe it would be that the the whole is greater than the sum of the parts.

00:45:03:07 – 00:45:28:02
Unknown
So I don’t know, in mathematics, if it was synergy, two plus two wouldn’t equal four. Two plus two would end up being six or 7 or 8. You know it. Would it would end up being much greater and much bigger than if you just added those parts together. And I saw that with her. I’ve seen that in other experiences in my life as well.

00:45:28:02 – 00:45:46:12
Unknown
I’m a firm believer in that, and I think that’s where the magic happens. Yeah. So I can’t say that you have to do everything because, yeah, I did have a client for a couple of years. She was a few years younger than Dorothea, but the two of them were very similar. This, this this woman, her name is Doreen.

00:45:46:12 – 00:46:12:18
Unknown
She she had also been a school teacher. She also had a life that was similar to Dorotheus. She had a can do attitude. She was open to possibilities. And she was very adaptable. So she was the right kind of person for that approach as well. But with her, my contact was very limited because it’s expensive. And, you know, her family were able to hire me for a while.

00:46:12:18 – 00:46:33:01
Unknown
But, again, it was just very limited. So she only got a limited part of the program. Some of her family members were kind of trained in some of the basic things. So they could they could implement some of these things when I wasn’t there. And that was helpful. She had oh, absolutely wonderful personal living environment. And I think that was helpful to her.

00:46:33:01 – 00:46:57:10
Unknown
And she was lucky because most people that are in a facility could never dream of what she had. It was, who was this corner suite? It was 778ft², two bedroom, two bathroom, the little kitchen, dining room, living room with wall to ceiling windows that overlooked the valley. And it was it was just it was palatial and it was her home.

00:46:57:12 – 00:47:15:04
Unknown
And it was it was all the best stuff from her home were brought to this. So she never felt that she was taken out of her home. Is just her home moved with her. How stunning and how I mean, yeah. And you know, I wish that was possible for everybody anyway. So in her case, that was that that was a possibility and that was helpful.

00:47:15:06 – 00:47:44:05
Unknown
But she only got part of the program and yet she seemed to be succeeding. The, the whole thing got shut down after two years because that’s when, we had Covid 19 and I wasn’t able to see her anymore. But at least in those first two years, I saw some really good positive changes. The main thing was that her stabilization, she did like not just the and then our C test, but also the Moca and the sage tests.

00:47:44:07 – 00:48:06:11
Unknown
Her score did not go down, not even one point over those two years. And that’s not very common when that happens. And and again, she was able to do things that she hadn’t done before. She was learning new things also. So I think, you know, given the exposure to the rest of the program and given more time, I think, you know, she would have done maybe as well as Dorothea.

00:48:06:11 – 00:48:28:14
Unknown
I don’t know. But, I know in the in the little bit of time we had, it seemed to be very helpful. Sometimes the supplements are overwhelming. I’d like to get into that. But one of the things that you did that I think is really helpful for people, care partners who are feeling is some overwhelm, is you created this super nutrient dense smoothie that’s hard to get.

00:48:28:14 – 00:48:49:21
Unknown
And the the nutrients that are so necessary for cognitive function. Tell us about that breakthrough. Yeah, I was pretty excited about that one. And that seemed to be helpful too. And now I think it was was so much easier for her. Also, can you imagine at one point I think she was she was having to swallow 13 different capsules.

00:48:49:23 – 00:49:13:08
Unknown
And for somebody that’s in their late now, you know, that’s that’s a lot to swallow. And she didn’t really enjoy it. I don’t think anybody would. And yet the substances what was in those capsules was helpful. So the other thing is I didn’t know that she was able to fully assimilate the capsules. Maybe she was, maybe she wasn’t.

00:49:13:10 – 00:49:39:17
Unknown
But I just, you know, our digestive systems become a little more compromised as we age, and especially when somebody is in their 80s and 90s. So the thought was, wouldn’t it be great to if it could just be like something she drank? So I worked with her naturopathic doctor and we came up with a smoothie. It started. It has to have a base, something that, you know, we had everything two.

00:49:39:19 – 00:50:06:09
Unknown
So the base was a green strength and it was one of these Whole Foods green drink. I know that there’s at least 3 or 4 brands in the US. There’s at least a couple of brands in Canada that are doing exactly that. So the actual it was a powdered drink. It had all the green fruit. So it had the kale, the broccoli, the spiraling of the blue green algae, everything green.

00:50:06:10 – 00:50:32:05
Unknown
It also had a number of different vegetables. It had, I think it has some fruit in it as well, in a powdered form, but the base was it was a fermented base. So they were already pre digested. And that’s what made a really big difference because of the fermentation. It really improved the assimilation of the nutrients. So that would there was this powdered base.

00:50:32:07 – 00:50:53:06
Unknown
Then what I did and this is like it’s so basic but it was it was the only way I knew how to do it is I took the capsules that she would have been swallowing, and I’d open them up and they dumped them into this mix. And, and then I would figure out, you know, two weeks in advance or maybe ten days in advance.

00:50:53:06 – 00:51:26:19
Unknown
So I would take ten days worth and pour exactly that amount in, then mix the mix, then the mix would go into or it would have been 20 packets because she got one in the morning, one in the evening, and so the there was like a funnel and, and the powdered drink mix would go into the packet, the packet would be sealed, and then whenever she would have a meal, or it could be done with a snack at the end of that meal packet would be opened up.

00:51:26:21 – 00:51:50:15
Unknown
The contents would be poured into, shaker bottle, or when she was at home would be poured into a blender. And then in that a shaker, bottle or blender would be something like, like a fruit juice that she enjoyed. And then the whole thing would be mixed. And what we’d end up with is it tasted really good. And she enjoyed drinking it.

00:51:50:17 – 00:52:25:17
Unknown
And it was it was never done on an empty stomach because it was always done with food, because it is food. And so all she would have to do is just drink this drink that she enjoyed. And, and that was it. Again, I can’t measure, you know, how much improvement there was, but it was just one of these factors that she seemed to do better once we got her on that a huge rate, really beautifully about the role of purpose and humor and kindness and autonomy, these emotional and relational factors.

00:52:25:19 – 00:52:49:00
Unknown
How do you see them affecting and shaping Dorothea’s success? I think that’s a really important factor. This often overlooked. You know, we always seek meaning in our lives. You know, it’s just it’s a it’s a human need. And what often happens is that, you know, a person has they’ve got a purpose. They’re the patriarch or the matriarch of the family.

00:52:49:00 – 00:53:12:21
Unknown
They’ve got the family to be responsible for and take care of. They’ve got their career. Or if they’re doing volunteer work in the community, they’ve they’ve got their volunteer work that they’re doing, and all of these things help establish, you know, who who they are as a person. And they can identify with these. And when they go into this dementia journey, a lot of that falls by the wayside.

00:53:12:21 – 00:53:38:15
Unknown
And then a lot of it is taken away once they go into something like residential care or even assisted living. And at that point they don’t. There isn’t something that they need to do. You know, it becomes a life of leisure. And I think in, in our society when we when we think of retirement, we often think of leisure, you know, we’re going to, we’re going to play golf every day or we’re going to play pickleball or tennis.

00:53:38:15 – 00:54:02:03
Unknown
And those are all good things. We’re going to travel, we’re going to relax. We’re going to sleep in in the morning. But after a while, those don’t really have purpose. And it doesn’t really give the meaning that our lives really need. So what I tried to do with Dorothea was bring that back as much as possible. So, you know, this is just a really simple one.

00:54:02:03 – 00:54:25:11
Unknown
When she was at home, she had chores that she had to do, and there is this big whiteboard and it was in the kitchen and had all her chores. Now, these were easy chores like, you know, I don’t know, dusting the, the tables in the living room or something like that, which is an easy task for her, even even in her late 90s.

00:54:25:13 – 00:54:46:05
Unknown
And she enjoyed it, but it would be something that that it was a chore that she would do. And she was responsible to do it like I made it seem to her that, you know, we’re counting on her to do this, you know, like, if she doesn’t dust that table, well, nobody else’s, you know, and of course, all that stuff would have been taken care of, but, you know, and didn’t tell her that.

00:54:46:05 – 00:55:10:20
Unknown
So she would have this list if she didn’t get it done. Now who cares? But she wanted to. And and then there would be things like after a meal was done, she would often help out with the dishes. But one of the things that would happen is that, we’d have to unload the dishwasher and there were, there was cutlery, and there were three different sets of cutlery, and the three different sets of cutlery had to be organized into these categories.

00:55:10:22 – 00:55:31:20
Unknown
In these drawers. You know, I would stumble on it sometimes anyway. So that was that was her task. And she would have to sort them out and she would do that. And she felt like she was doing something. There was, this, this place that we used to drive to and, you know, in the weekend and like, on a Sunday afternoon.

00:55:31:20 – 00:55:59:04
Unknown
And it was this wonderful. It was at the edge of this farm in a vineyard, and they had all kinds of fruit and vegetables, and we had to buy all the organic, you know, the food for the week there. And it was a beautiful place. And it had this patio and, and there were chairs out there, and, and she would often just sit out at the edge of that patio, and she, she would be the greeter and she would greet people as they were arriving.

00:55:59:04 – 00:56:23:09
Unknown
It just all these things that kind of gave her, you know, just this little sense of purpose and, and I, I saw that she just really came alive with that. So as much as possible to give people purpose now within the residential care facility, there were times where sometimes there would be residents who would help folding the towels or helping to set the table or something like that.

00:56:23:09 – 00:56:46:23
Unknown
So there were occasions once in a while when somebody could actually have some purpose, but that’s that’s as far as actually doing a task. The other thing is something that we often stop doing when someone is showing signs of dementia, is we stop asking them for advice. We don’t ask them for their opinion. And that was that was really important.

00:56:46:23 – 00:57:08:13
Unknown
Like anything that we were deciding on, and when she was with me, she would be part of the decision and her opinion really mattered no matter what it was. And, you know, given your as many choices as possible, but also asking her advice because then she felt like she’s able to give back. And that’s that’s kind of you feeling that was the way she lived your life.

00:57:08:14 – 00:57:35:23
Unknown
You share that. There were moments where her wisdom surprised you even. Yeah. Can you share, like a moment when having dementia didn’t diminish her humanity? In fact, it seemed to almost like amplify it. Yes, yes it did. And some, you know, some surprising and delightful and sometimes very humorous ways. Yeah. Her, her kindness towards others was something that that surprised me.

00:57:36:00 – 00:58:01:17
Unknown
She sort of softened at the edges as, as she was getting older and as the dementia was, you know, as her decline was increasing and, I know she, she took as she took a real liking to people that were, she’s always campaigned for the underdog. So when we’d be taking a walk and she’s encountered people that were homeless, you know, that she would just, like, just like glue, she’d go right to them and strike up a conversation.

00:58:01:17 – 00:58:17:22
Unknown
And she treated them like they were long lost friends. Not that they were strangers, not that they were people in need, that they were just they were friends. And she’d ask them things and and you’ll laugh with them and tell them like, well, if it was a guy, she’d tell him how handsome he was or if it was a woman, how beautiful she was.

00:58:17:22 – 00:58:57:12
Unknown
And so that part of it, and that she did that more as she got older than she had even, prior to that. So that was something that kind of increased with her dementia. She had a sense of humor, but her sense of humor, and, her ability to just be kind of silly, that also increased, I guess, because she wasn’t self-conscious as much, you know, like all the, you know, all the, things that bind us, you know, the social etiquette, you know, those aren’t really holding her back as much.

00:58:57:12 – 00:59:16:21
Unknown
And, just thought of, you know, and just it’s just silly things. There was there was a time when, she had been home for the weekend, and we had to go back to the, the care facility. I needed to organize all of her stuff and repack her suitcases and get everything packed in the car, know, enter laundry and all that.

00:59:16:21 – 00:59:42:05
Unknown
So I was going to take me almost a half an hour to do. And so I thought, well, we’ll find a TV show for her. And she used to watch, she like to watch documentaries and educational TV, but we couldn’t find anything. And the only thing we could find that would fill that half hour gap was an episode of The Simpsons, and she had never seen The Simpsons before, and at first she wasn’t really that thrilled.

00:59:42:05 – 00:59:59:01
Unknown
She thought it was really stupid. And there it was. One point, it came by and asked her how it was going. She says, oh, this is the stupidest show she’s ever seen anyway. But she, she, she hung in there and she watched the show. And then I got everything done. And we got in the car and we’re driving to the facility.

00:59:59:01 – 01:00:22:23
Unknown
And I asked her, was there anything that she liked about it? And no, it was really stupid. And I said, well, were there any characters that she remembers? And immediately she said, Bart Simpson, I said, okay. And somehow Bart Simpson had made an impression on her. I bet you know where this is leading anyways. So we we get into the care facility.

01:00:22:23 – 01:00:46:15
Unknown
It’s like 930 at night. They’re everybody’s gone to bed, all is quiet. And she leads the way and go down the hallways and then into her unit, and they’re at the nurse’s station where some of the nurses and and the and the care aides, and they were, and they’re, they’re really good to her and very welcoming. And she hadn’t been there for a couple of days.

01:00:46:15 – 01:01:17:12
Unknown
And so she came up to the nurse’s station and one of them said, well, we’ll come back, stranger. And with a big smile on her face, she said, eat my shorts, and then walked off to her room. And it’s like, where did that come from? Since it oh my God. Yeah, funny. That is great. You know, you I want to sort of expand the conversation to you had agree you had a relatively good experience in a long term care facility.

01:01:17:12 – 01:01:43:23
Unknown
There was a real partnership, it sounds like, between Dorothea, the care partners that were there, the staff there, and then you, her adult children. But you also candidly talk about the harm that can be caused by psychotropic medications that are you. Yeah. As sedatives. I want I want to dig into the current model of long term care. It’s just fundamentally misaligned with what people who are experiencing dementia actually need.

01:01:43:23 – 01:02:07:18
Unknown
And this is Marie, right? This is a near and dear to my heart. Yeah, yeah I career, but I want you to describe what does a better system look like. Well I would say first and foremost a better system would be exactly what you’re doing. Alma Rama is it’s the model right now. It’s it’s fantastic. I love what you’re doing.

01:02:07:18 – 01:02:25:21
Unknown
And I think the whole world needs to know about it, so. But you know it. As you know, it’s a big undertaking. It’s pretty expensive. And then a lot of people can’t afford to go to a place like that with the residential care system as it is. And no, I’m speaking directly to the way it is in Canada.

01:02:25:21 – 01:02:50:03
Unknown
But, you know, I lived in the U.S. for 30 years, and I know the system there, and they’re both very similar. So both systems are based on a hospital model and understandably so. But, you know, we go to a hospital because we have an acute condition. We go there for a few days or if, you know, a worst case scenario, we might be there for a few weeks and then then we’re out of there.

01:02:50:03 – 01:03:23:16
Unknown
Then we’re back home. We’re not living there. It’s not set up for a place for people to live. It’s an acute setting where people can get treatment. But that same environment is the environment that’s the base for almost all residential care facilities. And that hospital environment or hospital like environment does not, in my opinion at least, does not work for people who have dementia, especially people who are relatively healthy and have dementia.

01:03:23:18 – 01:03:53:21
Unknown
It’s institutional. There’s not enough freedom, there’s not enough stimulation. It’s it’s really based on let’s keep these people as comfortable and as safe as possible and just be with them as they decline and just give them this safe, comfortable environment until they die. And the expectation is they’re going to decline and they’re going to die. And I think that’s fundamentally the wrong direction to go.

01:03:54:01 – 01:04:13:18
Unknown
I think for a lot of these people, they could be like Dorothea, and if she had not had the hip fracture and then and the fracture didn’t even do it, it was the, the, the complications after the surgery, if that hadn’t of happened with her, she most definitely could have lived another two years, maybe four. So she could have lived to 104.

01:04:13:20 – 01:04:40:19
Unknown
Well, she’s somewhat unique, but she’s not that unique. I think with a similar approach. I think many others could do the same thing, but that doesn’t happen very often in residential care, not set up for that. The other part of it is that staffing is is a huge issue in both countries. And so with this desperation to get enough staff in there, sometimes not the best choices are made.

01:04:40:19 – 01:05:05:00
Unknown
As far as who becomes one of these care, givers and care partners, the training is very basic, and it’s just the fundamental, the skills that are needed to, again, to keep these people safe. And, you know, for the functioning of the of the facility and the, the basic care. But it doesn’t really get into the psychology of care.

01:05:05:00 – 01:05:29:12
Unknown
It doesn’t get into it certainly doesn’t get into human potential at all. And so they’re understaffed. They’re undertrained, you know, as far as recreational programs very, very lacking and they’re lacking in imagination, there is so much more that can be done then the programs that are currently offered. And then, of course, the food services, the food services are institutional.

01:05:29:12 – 01:05:49:19
Unknown
They’re they’re feeding a large number of people and they try to give the, you know, the best food they can. But it’s, you know, a lot of it’s prepackaged and canned and it’s not the freshest. And it’s, it’s certainly not, a whole living food. And of course, they don’t get any supplementation unless it comes from a family member.

01:05:49:21 – 01:06:10:18
Unknown
So and they don’t get exposure to nature, they don’t even get to most in most facilities. They don’t even get to go outside and get the, you know, the healing energy of, of sunlight, which we desperately need every day. Because there’s not enough staff to go outside with them and, and, you know, and to supervise, make sure nobody gets hurt.

01:06:10:20 – 01:06:33:09
Unknown
So I do want to emphasize that, you know, caregivers, care partners, staff, everyone is doing the best they can. Yes. It’s just it’s like a conceptual framework shift. It’s a paradigm shift that there is potential for these people to heal for for the residents to heal, for the community members to heal. And I think that that really shifts things because we certainly have seen that at Miramar.

01:06:33:12 – 01:06:56:10
Unknown
People who have experience in senior living, they’re expecting a downhill trajectory. And it really takes a mindset shift. It takes seeing. It takes just for getting better. And then there’s like this, And now every resident is treated differently because you see that attention. Yes. Hey I want to know like how do you respond to critics who might dismiss this as a one off or false hope?

01:06:56:10 – 01:07:15:03
Unknown
Your book has a counter argument in there that that we use as well, but I’d love to hear it from you. Well, I’m going to use your counter argument, and I think I was, in Doctor Reticence work. It’s one of the people on his team, I think was the first person that I heard this with. Yes.

01:07:15:03 – 01:07:47:15
Unknown
We have to be careful not to give us, and I understand, but at the same time was worse than false hope is false hopelessness. And there’s way too much false hopelessness. I would prefer to see something that I refer to as realistic hope. And I think realistic hope is that we can provide an environment and activities, and good nutrition and, and all that, the factors that we’ve been discussing.

01:07:47:20 – 01:08:15:08
Unknown
But most of those factors that can result in more good days and bad days, probably, a healthier, a more vibrant life span or health span. The probably live a little longer. Probably. It will slow down decline. I think that’s very possible and probable. They’re going to definitely have a better outcome. I think all of these are realistic, and we can expect that and we can strive towards that.

01:08:15:08 – 01:08:47:09
Unknown
It is even possible that we can go beyond that. There is you know, there’s neurogenesis. There’s also can be leading to or neuroplasticity that we need neurogenesis that can be leading to the possibility of improvement, the possibility of of some level of reversal. And I personally, I can’t say that, that anything I did led to a reversal, but I can say that I it certainly it slowed the decline dramatically and made for, a much better, much higher quality of life.

01:08:47:11 – 01:09:14:07
Unknown
And I think we can safely aim for that. And I think we in the coming years, but we can aim for more in a place like Marama, you’re already aiming for more and you’re getting more. You’re going way beyond that, which is fantastic. That’s where we need to go. But even prior to that, even without those resources, we can still, there’s so much we can do, a much better outcome.

01:09:14:09 – 01:09:38:08
Unknown
As I was wrapping up our conversation here, I’m curious if talk to you could give one message to the world about aging, about dementia, about possibility, about hope. What do you think she would say? Boy, that’s a really good question. Well, why don’t we start with you? What would you say if you had one message and be open to possibilities?

01:09:38:10 – 01:09:59:00
Unknown
That’s what I would say. And I think she would choose to do something similar. Of course she would. She tell everybody that she loves them up and down, wouldn’t eat my shorts, maybe. Yeah. And incidentally, if you don’t mind, I’ll put in a plug for the book here. Yeah. I want everyone to find out how they can find the book, if you would.

01:09:59:02 – 01:10:20:09
Unknown
It’s upside down and even side. Sorry. Maybe you should say it real quick. Here. I’ve got it in front of me. Yeah, that was that was right. You had it up and down and even sideways. And where can listeners learn more about you, your work, and maybe even bring you in to mentor their organizations? I would first of all, I would be honored and happy to do something like that.

01:10:20:09 – 01:10:40:20
Unknown
One of the things that I, you know, it’s one of my next projects is, I’d love to actually develop a pilot program in a facility and try some of these things out and just see if, you know, again, we’re not going to get to the level of what you’re doing at Marama, but do get a little closer or at least at least a better outcome.

01:10:40:23 – 01:10:58:18
Unknown
And I think that that would certainly be possible. I think it’s practical. It will cost a little more, but not a whole lot more. I think it is. I think it is a doable project. And I’d like to, to really see something like that happen and not know to be involved with. I think that and of course, yeah.

01:10:58:20 – 01:11:26:22
Unknown
You know, anyways, the book, it’s 266 pages, hopefully. It’s an enjoyable read. That’s what I’m here. And so part of it is a story. It’s a story about a remarkable woman. But it also it goes into the story of her dementia dream. This is one person’s journey. And it also there there’s there’s many insights and some practical tips that are embedded in this book.

01:11:26:22 – 01:11:55:00
Unknown
Title again is up and down and even sideways. It’s available exclusively on Amazon.com. And, all you have to do is type in the title where it is there, and it will come up on amazon.com. Fantastic. And there’s they’re very fast at shipping it out. And anyways, that’s the book. And as far as and of course in the book is contact information for me so you can reach me.

01:11:55:00 – 01:12:24:01
Unknown
If somebody did want to reach me I could program this as luminescence. And the reason I used that, that particular word was that luminescence is essentially the light from within. And my feeling is, for a lot of us, especially dealing with something like dementia, we still have that light within from within. But it’s maybe a little more dim these days, and maybe we can turn the volume up and that light can shine.

01:12:24:03 – 01:12:50:11
Unknown
And so it’s, you know, that that light from within emanating out and that and the term is luminescence. Incredible. And what could that. Well, put the link in the show notes as well. So thank you not only for sharing the science and strategy behind this integrative cognitive well-being program, but also like the heart and the devotion and the humanity that shaped your mother’s remarkable 22 year journey.

01:12:50:12 – 01:13:12:16
Unknown
You just show up with so much dedication and commitment and compassion, and your work really reminds us that we are not powerless. No, that environment matters, but connection matters. And that even in the face of cognitive decline and an Alzheimer’s diagnosis, people can surprise us and delight us and continue to grow and laugh and connect and have a really fulfilling life.

01:13:12:18 – 01:13:47:13
Unknown
Your mother’s story shows us what’s possible when we refuse to settle, when we refuse to accept that nothing can be done, and when we honor that whole person and we choose hope over resignation, her journey, and your unwavering commitment to her and your advocacy for her and your creativity, your problem solving just acumen. I mean, it’s incredible and so inspiring, but it invites all of us to rethink what dementia care can be and to imagine these systems that really support people living in vibrant, meaningful, amazing ways at 100.

01:13:47:13 – 01:14:10:08
Unknown
Like, it’s just incredible. So I want everyone listening. I hope that this this conversation encourages you to trust your instincts. We didn’t even dive into that. But it’s it comes out in the book, like trusting your instincts, challenging old narratives, not taking value, especially when they’re not hopeful and seeking out root causes, really emphasizing environments where your loved ones can thrive.

01:14:10:10 – 01:14:37:04
Unknown
You write in the book, time doesn’t heal, healing heals, and it’s like, yeah, obviously, like, let’s actually do the healing, not just wait for things to progress. And there’s so much that we can do to change the trajectory for ourselves, for our families, for our communities. And so I just cannot thank you enough for your work and your courage for giving the world this, this example of what’s possible when we lead with compassion and curiosity and commitment in everything that you do.

01:14:37:06 – 01:14:56:22
Unknown
And above all, thank you for sharing Dorothea with us. Like her, even her personality and and her, she just comes through in this story, in such a in such a vivid way. And so I’m just beyond grateful to have had you here today to share this story. Thank you. Well, I feel very honored to be here with you.

01:14:56:22 – 01:14:58:09
Unknown
And thank you.

01:14:58:11 – 01:15:23:05
Unknown
Thank you so much for listening to the Think While Atwell podcast. If you enjoyed today’s conversation, please take a moment to subscribe. Leave a review and share this episode with someone you care about. It’s one of the best ways to help others discover tools and inspiration for aging well, to stay connected, get bonus resources, and never miss an episode.

01:15:23:07 – 01:15:33:02
Unknown
Head over to doctor Heather Sanderson, dot com and join my email list. Until next time, keep thinking. Well, an aging on purpose.