DR. ALLEN POWER: Reimagining Dementia Care with Compassion and Community

Imagine your loved one living with Alzheimer's in a place where they could truly feel at home, free from the fear of wandering. This episode shares heartfelt stories of personal experiences, including my own mother's joyful time in a vibrant Los Angeles loft community. Join my co-host, Don Priess and I, as we welcome esteemed guest Dr. Allen Power, a renowned geriatrician, whose compassionate approach to dementia care challenges traditional methods and focuses on creating environments that foster contentment and security for those affected by Alzheimer's.

We venture into the transformative journey of Dr. Power, who moved from general practice to become a leading advocate for non-pharmacological dementia care. Influenced by the Eden Alternative movement, he reveals his insights on the misuse of antipsychotic drugs and highlights the importance of communication and community integration. Our discussion sheds light on the experiences of families affected by medication misuse and calls for innovative care models that prioritize the well-being of individuals with dementia, emphasizing the power of love, companionship, and understanding.

Explore how rethinking dementia care can enhance quality of life, balancing safety and freedom in care environments. Together with Dr. Power, we reflect on the power of intergenerational relationships and the vital need for societal shifts towards embracing diversity and supporting aging in place. With personal anecdotes and expert insights, we challenge misconceptions about dementia, highlighting the lessons of mindfulness and the importance of integrating people with dementia into communities, ultimately advocating for a more inclusive and compassionate approach to care.

Thanks for watching, listening, and sharing!

Much Love,

Susie

Dr. Allen Power is a board-certified internist, geriatrician, Schlegel chair in aging and dementia innovation at the Schlegel U Waterloo Research Institute for aging, a sought after speaker around the world, and a trained musician and songwriter with four recordings. Peter, Paul and Mary performed his song of elder autonomy, “If You Don’t Mind”, and Walter Cronkite used his song, “I’ll Love You Forever” in a 1995 Discovery Channel profile of American families. A recent project was composing music for Anne Hills’ latest album (www.annehills.com). 

Contact: DrAlPower@gmail.com

Chapters

• 0:00 Love Conquers Alls
• 8:42 Transforming Dementia Care Through Conversation
• 13:36 Rethinking Dementia Care Models
• 19:06 Transformative Communication in Dementia Care
• 30:05 Balancing Risk and Well-Being in Dementia
• 37:09 Accepting Risk and Embracing Imperfection
• 43:10 Embracing Diversity in Dementia Care
• 52:11 Learning From People With Dementia
• 59:59 Aging in Community

Transcript

Don Priess: 0:00

When the world has got you down, Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear and to date, there's no cure. So until there is, we continue to fight with the most powerful tool in our arsenal, love. This is love conquers all, a real and really positive podcast that takes a deep dive into everything, Alzheimer's, The Good, The Bad and everything in between. And now here are your hosts, Susie singer Carter and me. Don hi everybody. I'm Susie singer Carter, and I'm Don Priess, and this is love conquers all. Hello, Susan Priess, is

Susie Singer Carter: 0:47

Hi Donald. What's excited?

Don Priess: 0:49

What's happening?

Susie Singer Carter: 0:50

I'm excited. Yeah, we have a whenever. We have a great guest today. And I don't usually start off with that, but we do. And I was thinking about, I was watching our To Be Announced guests everyone will know, because if they clicked on this, they know who it is, so but yeah, I was thinking about after watching his his keener speech last night again. Just reminded me of all the stuff that we have talked about with this person before, and just reminded me of, you know, it also reminded me of of our conversation that we had with another guest recently, Lizette, who talked about elopement. Remember when we talked about elopement and how, which is not getting married? For those of you who don't know what that means, nothing to do with that. Yeah, nothing to do with marriage and going to Vegas and doing an Elvis style wedding. No. It has to do with that. Would be fun, yeah? No, this, it's, it's really about people, you know, with dementia, escaping their facility, which is often leads to disastrous, you know, events, so which happened to my mom when the first time I put her into a memory care unit, which I had no idea what it was, I didn't know, you know, and she had gotten out and was like, three miles away by the time they found her, she was determined to find her way home, I guess, right? And they were mortified. And they do remember, they called me and said, Oh, by the way, your mom was missing. They didn't call me when she was missing. They called me after they got her and said, everything's good. We're getting her hair done. She's happy, right? And I was mortified. And I was like, Oh, my God, like, like, For the grace of God, right? Yeah.

Don Priess: 2:45

And wait, she's behind a locked door. She's behind this security lock door with somebody sitting right there. And, you know, we, we couldn't figure out to get out, you know, so

Susie Singer Carter: 2:56

I know, right, you had to call some. We have to call somebody. And then I was thinking about the year that she lived with me, which was, you know, my mom was so healthy, so physically healthy, you know, full of life. She, you know, living with her Alzheimer's. Here we are living in this loft. She's surrounded with people that, you know, basically, like her own little city, that she could go and visit people every day, like all the people I don't know if you got, if you're not from Los Angeles, as a filmmaker, I've moved into a loft in Universal City, which is basically it was like living on a little studio, because everybody there worked in the industry, and everybody basically didn't use their garages. It's very industrial. They were their offices, or whatever they worked or they had some of the recording studios. My mom was in her prime. She was often running every morning. She had a place to go. In fact, she ended up in one of the our neighbors who was a big rocks they were rock stars from Mexico. They put my mom in their music video, that they loved her and my mom. Everybody knew my mom. Everyone knew she had Alzheimer's, but everybody didn't care. And she, you know, the gates were open. My mom never left, because she was happy. We didn't worry about her wandering off into the streets and and I lived right on a pretty busy street. I mean, we had, there was Valley parking, there's a gate, but the gate was open. My mom did not leave because she had, she was she was satisfied. She was happy, as happy as she could be, right? And it made me think about our guests philosophy, and how important it is, and how we have to think about this. Because I'm just going to say his name, because I'm this is ridiculous. You're going to do the formal introduction, but Alan power, dr, Alan power, he's just amazing and and all besides that, he's he's just the nicest person you'll ever want to know. And and I think most people that are advocating for people that are vulnerable are very nice people in general. So I think, I think, you know, it's we're very lucky in that way that we get to surround ourselves with people like that, but, but honestly, I it made me think about how I didn't even think of my mom ever saying I want to go home when she lived with me, because she felt out of this, she felt like she was home. So that that makes me feel that makes me feel good. It's validating, and that's that's what we should strive for everyone right? Absolutely. Anyway, I just wanted to share that story. And I'm sure other people out there, think about it. If you have a loved one, think about them when they're when they've been the most happiest. If it doesn't resonate, what our guest is going to say to you. So give us. Give them an illustrious, well deserved introduction. Don it's going to

Don Priess: 5:58

be so illustrious. Are you ready? Gee, Allen, power, MD, is a board certified internist, geriatrician and Schlegel chair in aging and dementia innovation at the Schlegel U Waterloo Research Institute for aging, a sought after speaker around the world. Dr power is also a clinical associate professor of medicine at the University of Rochester, New York, a fellow of the American College of Physicians, American Society for internal medicine, and an international educator on transformational models for care of older adults, particularly those living with changing cognitive abilities. In addition, Dr power is an accomplished musician, composer and songwriter. He is also a featured expert in our upcoming documentary, No Country for Old people, an award winning author, Dr power is currently co writing a book with Professor Jennifer Carson and Pat sprig on creating inclusive communities for people living with a diagnosis of dementia. We can't wait to dive in and hear more. So let's say hello to Dr Alan power, hello. Dr Alan power

Dr. Al Power: 7:03

to both of you, yes, please call me say, as Paul would say, you can call me Al.

Unknown: 7:09

out. That's right,

Dr. Al Power: 7:15

it's pleasure. And you know, just just listening to your opening five minutes, you've already touched on about three hours of conversation that we have. You can just tee up if you want. We right, but we met in person back in June here in LA and and we just talked and talked and talked. And so I'm really looking forward to continuing that. First

Susie Singer Carter: 7:35

of all, thank you for being a part of the show, but thank you for being a part of our documentary, because you're such a big part of it, and and you and I have a little, little thing we do in the documentary, that is so you know, it was organic. If you remember the daughters from hell that you, that you shared with me, and it resonated so much, and it's one of my it's my mantra. Now I am a daughter from hell, and we're and we are powerful. So I love you for that, for many reasons, but one of those is that something

Dr. Al Power: 8:08

I got from my colleague, Dr Bill Thomas, who was talking about changing long term care in general. He said it's gonna take daughters from hell to do that. And I think he's right. Yeah. And you know, whenever you do marketing in long term care, the key marketing demographic is, is sort of the the middle generation women, because they tend to be the ones that take elder care on, mainly as their mantle when parents age.

Susie Singer Carter: 8:33

It's so true. It's so true. You know, not to notice no shade on men, because there are a lot of great male caregivers who are just lovely. We've met so many on our show. So like you Al, your voice, your voice in our community. So and who knew how? I mean, I knew you were beloved. But we're we both are part of a an international organization called Open the door. And boy, are you revered? You are one revered man, and as you should be. Well, let's jump into it. So I'm doing

Dr. Al Power: 9:07

great things in Australia, and I'm fortunate to be going back there in March of next year, so we'll be doing a special session with with the folks at community homes Australia. That's

Susie Singer Carter: 9:18

fantastic. Yeah, yeah, you're, you're, you're all over, and that's that's so important. So just a little background for people that don't know you, how you I know your geriatrician, but which are we were to our dying breed? Y'all because it's, you know, just not, it's not, it's, it's not as respected or or awarded like it should be acknowledged as because it's such an important you know, we have pediatricians out on the zoos, right, but we don't have on the other end of the spectrum, and we need more of you. So you started there, and then what puts you into the dementia realm? You.

Dr. Al Power: 10:00

Was really my work as a geriatrician. I started out just as a GP in private practice, and got lured into working in long term care, and got a job in a very large Long Term Care Community, first one for eight years, and then moving to a second one for almost 14 years. And during that time, of course, even though I had done it private practice, I was much more commonly, caring for people living with a diagnosis of dementia and and particularly in more institutional, traditional long term care settings, good people, smart doctors, smart nurses, you know, people trying to do their best, but in a system that really did not support the well being of people living with dementia, and in in the realm where all of the new generation of anti psychotic drugs are coming out, and they were just being used all the time for any kind of upset or any kind of change in a person's mood or their words or actions and and it just never seemed right to me, because I could see The sedation, I could see the other side effects of the medication. And every once in a while, we would come up with something that would that would actually solve a person's distress that didn't have to do with a pill. And I, and I, whenever that happened, I would say, Well, how many other people are there that that also, if we just were smart enough, we could find those solutions and not give them these pills. And along, about that time, in the in the late 90s, I mentioned Dr Bill Thomas, is when I became aware of the movement called the Eden alternative, which was one of the early movements to transform aging burst in nursing homes, but really anywhere where people live. And by following the the system that he and his wife Jude put together, and learning how you could take a system that has been kind of accepted as what it is, and say, No, it can be different, and to go through some of the ways you can transform a system as I began to be challenged more by people who frankly thought I was under prescribing because that would make people Sit down and have conversations, not just give pills automatically. I thought, well, how can I take the same kind of transformative thinking? How can I apply it to a condition like dementia? How can I start see things differently? Because I realized, when I was confronted with these challenges, that I had not really come up with the words well enough to explain what was wrong and what to do differently. I hadn't thought that through so that now we're we've moved forward now to to the mid 2000s and around 2007 I started working on my first book about that. I'd written a paper, sent it to the big geriatric journal. They liked it, but it wasn't evidence based, and so they didn't print it. And so one of my mentors at the University, Dr Bill Hall, said, Well, it's, you know, it's hard to publish things these days than our primary research. Why don't you write a book? And that was three years of me trying to figure it out on weekends when I had free time in my practicing, you know, and and just putting it together. And that's when the first book came out. And that was around the same time anti psychotics were being exposed for all their dangerous and ineffectiveness, and that kind of launched another career for me. So for the past nearly 15 years now, I've just been traveling and speaking and and working finding these ideas more and more

Susie Singer Carter: 13:16

amazing. Because you as you know we've talked about this, and some of the people that listen to us know my mom was, you know, a victim of Depakote, and I didn't even know she was on it and and my mom was not, you know, particularly hard to deal with at all. It was they started giving it to her when she first moved into her memory care, because it probably was easier. But I didn't know she was on Jeff a coat. All I knew is suddenly my mom, who was walking five miles a day, is no longer walking. She's in a wheelchair. She's in continent and, you know, and she, she was, she was just going downhill like and I thought it was just the progression of Alzheimer's, but indeed, her back, her GP, after she had a checkup, called me and said, you know, your mom's on this drug. It's a Black Label drug for people, you know, with Alzheimer's and dementia. It's called Depakote. And do you want me to order it, you know, take it off. And I said, Oh my god, yeah. Nobody asked me. I didn't know. So you know you Yeah,

Dr. Al Power: 14:22

I think a lot of us didn't know. And I will tell you, back around the time I was, shortly before I was writing the book, that was the kind of thing where, when someone discovered someone who was having those side effects, it was reportable. They were just reporting the first cases in medical journals. And and I had a couple myself and and in my first book, I told some what I called awakening stories of people who are taking off their medications and all of a sudden began to think and do things that we didn't think they were capable of doing. And even though anti psychotics feature in that story, the Depakote, which is naturally an anti seizure medication, is used this way, had some of the most. Stories in my book, because it was causing amazing effects in people who did not appear sedated, who had normal blood tests, who didn't appear to be having side effects from the medication, and yet, when the medication was stopped, they had amazing transformations. Wow, it's, it's, and that's part of the problem is when, when we say that these drugs are sedating. People say, Oh, they're not. They're not sedated, you know. But they don't realize what's happening in the brain isn't always visible. It's not always falling asleep in your plate of spaghetti, you know.

Don Priess: 15:35

It's not being able to walk. It's not it's becoming incontinent, all those things, you know. It

Dr. Al Power: 15:39

changes the quality of your life. And it's the big self fulfilling prophecy, because we expect people with dementia to decline. When they get worse, we say, well, it's their dementia. Of course. This,

Susie Singer Carter: 15:51

this, you guys, this, expect. I heard this ad nauseam. I heard that anytime my mom was being neglected, they go and something would happen. They would say, well, that's part of the disease. That's part of the disease. And if you don't know better, you're like, Oh, well, maybe it is. It's part of the disease. So I guess all those horrible things, like, you know, UTIs and sepsis and, you know, pressure sores, that's what happens. But it doesn't, it doesn't have to be that way. Elopement, yeah. Elopement, right?

Dr. Al Power: 16:22

I just want to say a tell a funny story in my first nursing home job, but we also worked at an assisted living place that that was adjacent we actually had an elopement to where two widowed residents struck up a relationship and became quite close, but because they weren't married, other residents would gossip about them and talk about them and judge them. And so they actually, they actually discharged themselves from from the home, went off in the community. They got married and moved back in a year later as a married couple. So I say I have one. I'd have one episode of elopement in my career. True. Oh, great.

Susie Singer Carter: 17:02

I love that. That's a happy story.

Dr. Al Power: 17:05

But your comment, there's one thing I want to say, because it's going to, I think it's going to feed into so much of what we talk about when you talk about what's expected with people with dementia, one of the biggest things I do, which challenges most of the conventional thinking around dementia, whether it be doctors, researchers, the media, the Alzheimer's advocacy organizations, is this idea that what people are expressing are what they call behavioral and psychological symptoms of dementia, that people do the things they do because they have brain disease, and the brain disease is somehow causing this. And this is a big thing, I push back again against in the approach I have one of the reasons it works, or when it works, it's because you are willing to set that framework aside and say that is not correct. There is definitely an effective dementia. It definitely affects, it modulates your response in a given situation, but the brain disease is not the cause of the behavior. And if we can get past that one bit of thinking, it opens us up to all kinds of possibilities, which is kind of where I've gone in the past. I love it.

Susie Singer Carter: 18:12

I love it. I did that. There's two things I want to say about that. First, first, put a pin in this. I want to know because you you started to go down this before about what is the I want to know what the what the current model is that is not working in our in our homes, and then I think that's a great jumping off point. Let's start with what the model is now and how it doesn't work. Because I think that's that then we can jump up and say, what works, you know? And

Dr. Al Power: 18:40

you know, when we talk about transforming systems of care, we talk about three basic aspects of transformation. There's the sort of personal philosophical transformation, changing how we see things. The second is physical transformation, so changing design, the built environment that the person is living in, that we work in. And the third one is operational transformation, transformation, transforming how systems work, and they're all important. Of what I really work on and what I just talked about with the with reframing how we see these so called behaviors is is part of the philosophical thing, changing, rethinking dementia, as I often say, changing how we see the condition, changing how we see people, seeing the whole person changing our understanding of what it means. For a lot of it, it's viewing for me, it's viewing dementia through the lens of disability, rather than just fatal disease, because I think a lot of the distress we see is because people are in the system that doesn't accommodate their changing needs. I was just participating in LinkedIn discussion about this phenomenon called sundowning. And sundowning is so much caused by us because we force people with changing brains to fit into our rhythms of rest of activity, to to think in certain ways at certain times that can be fatiguing and exhausting. And we've all been to those all day seminars where we're forced to. All day, and we start to get a bit restless ourselves when we have to conform to other people's ideas. So, so that's kind of a concept, and that feeds into that third part, the operational. And the operational, to me, is really the key. I can get people to think differently, but if they go into a rigid system of care, then the problem is that they just give up, because the system, you know, doesn't enable them to think differently and act differently. And so my seminars, unlike a lot of seminars, not only teach about Alzheimer's and and, you know, other forms of dementia in a different way and give people tools, but they also talk about, how do you break down and transform the system of care? Because if you don't do that, hand in hand with changing your thinking, then you're not going to get anywhere. And the built environment is important too. It's very important. But I think the other two you really have to get a handle around those, because unfortunately, when you think about things like design, when you think about things like technology, your decisions about those are going to be affected by how you see dementia, and how you see people with dementia. So are you creating a a, you know, an intensive care unit or a high technology prison, or are you creating an enabling environment? And so you can't really make those decisions until you've changed your thinking about what dementia is and about what people with dementia

Susie Singer Carter: 21:18

need. I love that, and I don't know, tell me what you think about my my my metaphor, or my barometer for how I look at people with with, you know, a debilitating disease that will get worse. But I do it as a mother. I watched my daughters grow right and when they're and when they're babies, and they don't have their language and they don't have their mobility, we give them grace to listen with other kinds of listening, right pews. Are they hungry? Are they tired? Are they upset? Are they in pain? And, you know, and we don't, for the most part, most of us that love children, we don't get we don't we don't get angry. We don't say, well, she's crying, let's just give her a drug and let her Shut up. You know, we say something's wrong. There's a reason why she's crying. There's right. And so when you don't have words, that's how you show communication. We do it with our pets. We listen, we watch. Is there something wrong? Are you happy we can tell we don't need words. And you taught me that one of our first interviews. You know, when, when the nurse at the when my mom was been into the hospital, and I called and said, Could we do a a FaceTime so she could just see me? She's like, Honey, she doesn't talk. And I was like, That is the example of not understanding right? Anyway. So I mean,

Dr. Al Power: 22:44

I think that's one of the one of the most basic things we need to do to support people well, is to become experts in communication. And communication is two ways. So it's it's communicating information, but it's also listening, understanding information, understanding information that may be presented in the non verbal way, or through symbolic language as people, or through emotional memories rather than factual memories. All those things are part of communication. And I agree with that 100% and I have also used those metaphors the only place where I get a little nervous because people dementia are often stigmatized as not being there, as being less than a person. And so the the only place where I shy away from the metaphors a little bit is anything that that leads us to infantilize people with dementia in our minds, back in very children, or dehumanize them. That's where it gets a little tricky, but, but there are parallels. They absolutely are parallels, if we can, if we can, you know, learn to use other ways of interpreting people who don't speak our language. It could even be an adult person who's from another country. And you're, you're communicating in two different languages. But you know, as the travel guru Rick Steves says, all you need in a country is about five words and lots of hand symbols and almost everything you need to do so have to have the verbal language to understand people. And the other important part of that, the other important part, which is an operational thing, is proximity. So having the same people care for the same people, and not rotating staff all the time, because the people have huge challenge. That's, oh yeah, huge challenge. But the people I've worked with who are consistently assigned, they know people's needs beyond words. They can tell me somebody needs something even though they haven't said anything. They can tell me when someone's coming down with a serious illness before there are any physical signs that might bring a nurse into the room.

Susie Singer Carter: 24:44

Yeah, that's right. They know their base. It's like, yeah. It's like me. It's like me taking Don had to go the emergency for his back a couple weeks ago, and they were they gave him a shot in one of his his pushes on the whites, whatever. And and all of a sudden he was getting. Clammy. And the nurse goes, Oh, you're getting clammy. I go, he's a painter. I could tell them that. And they went, Okay, got it. Went right into it, because I know, Don right, but if you know, and that's the thing, when you know somebody and you have proximity, like you said, that's very important to know that. And she was like, got it, got it, and put them down on the chair. Everything was good.

Don Priess: 25:20

And Susie mine early years with your mother, yeah, with Oh no, it's gonna say with Susie with her mother, because her mother could not communicate any more verbally. Yeah, she would always see even though her daughters knew her, their grandmother very well. I knew her very well, very, very well, but Susie could always she had that unspoken language that she knew what, when something was wrong, if something that, then none of the staff could and but, and that takes a lot, I mean, to take to have somebody, a staff person, there, that that's so, you know, there all the time, and really gets to know them, because they don't have time, you know, under Our current system, to get to know them. That's,

Susie Singer Carter: 26:03

that's a whole nother

Dr. Al Power: 26:06

bed, but that. But they're so they're so intertwined, though, and you can't improve one without the other. That's why I say it's not a three legged stool. I had a story about that early in my nursing home working career. There was a woman who lived with Alzheimer's who had no verbalization, and she could walk around, she could smile, and she could give people hugs, but there were never any words for years, and she started, at one point, grinding her teeth, and it was a really loud, I mean, you know, and she would do it sometimes, and she would not do it other times, and it was but it was so loud, it it was annoying to listen to. It felt like it must be painful. We did everything, you know. We checked for we checked blood tests, we checked for a urine test. We had sent her to the dentist to look at her teeth. Nothing at all, but her nursing assistant, who was consistently assigned to her, after a few weeks of the sound and off, came to me and she said, Doctor power. I noticed something. Whenever Millie is grinding her teeth. Seems to be a day when she's a little bit constipated. So we gave her a stool softener, and it went away now. Now, you know, there's nothing in my medical degree that helped me figure that out. It was the proximity of of the assistant to her, and the constantly getting to know her, understanding the associations that I couldn't see stopping in there periodically that made the difference, and that's why, once again, it's not so much a matter of degrees, you know, medical degrees or post graduate degrees. It's having the right perspective and being close to the person developing that meaningful relationship that gives you answers. And that's why system has to favor that.

Susie Singer Carter: 27:41

It's kind of common sense, which blows my mind, because we can you imagine if your child went to school and had a different teacher every day? I mean, in that teacher didn't know that student, like, that's their strengths, that's their weaknesses, all those things. I mean, it wouldn't be very successful, right? And it would also be very jarring, and, and, yeah, I think we know that with other demographics, but we but because of, as you say, ageism and ableism, it's just you know that this particular demographic is so devalued and misunderstood, and

Dr. Al Power: 28:18

it's over medicalization of the person and the condition takes away our critical thinking skills. As you say, we just write it off. That's the dementia we don't stop to think critically about. Well, why is that person doing that? Why? Why? Why did your mom try to leave a locked place? Maybe it was because it was a locked place and and we have already found studies and working on a new book that show that locked doors actually are a primary cause of distress, the feeling of forced confinement actually makes people want to leave, and opening the door doesn't cause a mad dash. In most cases, people look around they're content that they're no longer trapped, and they're okay with that. And so once again, our thinking, our logic around these things, is kind of broken by our view of dementia, and that's why that's always the first step is to broaden our thinking about the whole situation.

Don Priess: 29:03

We'll be right back.

Peter Eun: 29:05

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Susie Singer Carter: 30:04

I think that comes to what you talk about. You know, the risk management, right? So, and I think that is just so valuable to to to tell everybody about, because it makes so much sense when you would explain it. So please explain it, because it does make so much. Can I just say, Here's my mom when she first wanted to I just wanted to say is when my mom went into memory care and they locked the door. And here's my mom with her pocketbook, right? She seems she's a no. She's like, Why is the door locked? Excuse me, the door is locked and I can't get out because she doesn't understand that, why it's locked. And I can tell her all day long, Mommy, you have Alzheimer's, which I tried to be very obvious, you know, very honest with her, it's I would be infuriated if someone locked me in a room.

Dr. Al Power: 30:52

Yep, yeah. Well, well, I've been visiting here in California. I've actually been working on the risk chapter of our new book, and so I've been writing and writing and writing and thinking about this. So I'll try to encapsulate just a few points from what is already up to 7000 words right now. But anyway, first of all, first of all, the Rethinking dementia part, what is normal and what isn't normal. And I remind people that walking and going through a doorway is normal behavior that's not a a dementia related behavior. We do it every day. What's abnormal is locking the door and telling people they can't leave. We're the abnormal ones, not the person with dementia. So, so first of all, we have to think about we've created this, this, you know, artificial environment, and then we're blaming them for not being happy with the environment we force them into. As far as risk goes, you know, there there's two sides to risk. There's upside and downside. Risk is just the chance that something will turn out differently than what you think is going to happen. So if you know, if Susie is living in memory care and she gets up and walks on her own, what's the chance she can fall that's the downside, but also, what's the chance that your strength and balance might increase? That's the upside, or if you go outside, yes, you can step into the road, but you can also get some sunshine, some fresh air, eat better, sleep better, be healthier, be happier. So you can never look at one side or the other. We can every decision we decide to do carries some upside benefit and some downside risk, but also everything we decide not to do carries some benefit and some risk, and the amount of each depends on the decision and depends on how you go about it. So really a chapter, we'll talk a lot about looking at both upsides and downsides and how we can maximize the upside minimize the downside. There's no risk free environment. There's nothing that's 100% risk free, and we have to accept that, and we have to say, how can we improve quality of life with a reasonable assumption of risk? And that part of that, you know, involves knowing the person, knowing their values, because some of us like skydiving, and people like me wouldn't jump out of a plane unless was going down in flames, you know. So we all view risk. We view risk differently, and we have to understand, we have to individualize each person's needs. So there's a lot about that, but I also talk about the risks that we didn't expect. And you know, we had the perfect example that everybody knows about, and that is COVID. And when you just looked at COVID from the risk benefit of infection control, then it was obvious, lock the doors, keep families out, put people in their rooms for 14 days, wear gowns, gloves, masks. That makes sense from the infection control standpoint, but many, many 1000s of people got sick and died because of isolation, because they were medicated, because they couldn't sit in the rooms for 14 days, because they were missing their routine dental and other medical checkups because they couldn't socialize, they couldn't see their families, they were lonely. And so there are other aspects of risk that are just beyond the certain what if we do this? What if we don't? And one of the things that happens is, when you lock the door, people get upset. There's an old study from 30 years ago we quote, that shows that the majority of episodes of distress happened during the time when they locked the door and did no other intervention. So the lock door was causing the majority of distress. And we know that many people who live in memory care are getting antipsychotics, which are damers, which kill people. And so we can say that we are actually saying we're keeping people safe by locking the door, but then we're giving them a drug that is known to be one of the most dangerous drugs we prescribe for people with dementia, because the locked door is making them upset. So have we made them safe? Have we really kept them safe? And you know, you talked about how your your mother didn't feel right, part of it is, if we don't feel like the place we are in is where we belong, then we're going to try to escape. So part of it's a locked door. But we'll also talk a little about how do we create well being? How do we create the feeling of home in a place that may not be your house? How do we supply those needs don't don' make you want to escape and look for them somewhere else. And so a lot of it is about how we fulfill those various aspects of well being for people so that they don't. Feel the need to escape. So there's, there's a lot in that chapter. Needless to say, it's not just about walking away.

Don Priess: 35:07

Yeah, I think that comes into the, you know, position, like, Okay, I'm going to play the per i going to play our world now for the people who had, has somebody at home, who had didn't lock the door and they wandered, and now they're locking the door because of that, not taking into all that without this knowledge of how you can make your home, so they don't want to walk out. So what do you say? It's like they say, wait, wait, I didn't lock it, and they they wandered away. I can't have them wandering away, you know what? What do you say to them?

Dr. Al Power: 35:36

Yeah, and you know that does happen. I mean, we interviewed my good friend, my good friend, Joanna fix, who lives in Colorado. She actually ran for the Mrs. Colorado pageant, and I think she won. As a person live with Alzheimer's because she wanted to erase the stigma. She went out once, she went out once, you know, in the snow, and got a little disoriented, but she saw the mailbox, saw the number, and knew that she had to go back in there. So those things do happen. And so it's a combination, first of all, of meeting needs, of giving the right cueing that doesn't give you 100% guarantee people will try to leave, but rather than lock the door. How do you create safeguards? How do you create enabling technology? How do you meet the needs that even family members don't always know how to meet because they're taught by the doctors and others to focus on the disease and not on well being. So they might do for a person, take away their autonomy, take away their sense of meaning, just by very kindly and lovingly taking over for them. Sometimes people leave the house because it's a crisis. They feel like I need to go somewhere where I have some control over my life, so just giving people some of this instruction can help them to learn how to relate to their loved one in a way that doesn't cause a crisis, too. But I want to share one quote. And you know, I have some really brilliant friends, and one of my my colleagues, who's just a wonderful friend and a brilliant friend who I did a fellowship with decade ago, Dr Emmy Kiyota, who's an environmental gerontologist, and she talks a lot about the built environment and dementia and about design for aging, and she says something brilliant at a conference couple years ago. She said home can be defined as a place you come back to, and if you're never allowed to leave a place, it is never going to feel like your home. And I thought, Well, great. What a great concept. Then, you know, when was a place you leave and come back to and right? So the places that see somebody leave and go outside with them for a while, and if they say, we're looking for home, go out and say, well, let's go. Let's go look, you know, and walk out for a while and talk, eventually the person will be satisfied that that they that there's a place over there that that is giving them what they need, that has given them the freedom to explore a bit, and will often say, Well, let's go back inside and they'll be alright. Because, because home is so much, you know, you talk about that at the beginning, it's so much a metaphorical thing. Not, not 25 Maple Street with the green shutters. You know, it is, it is security, it's comfort, it's sense of belonging. It's control over your life. It's maybe loved ones. There's people that you feel you have a relationship with, and once again, we get the consistent staffing small households, people that get to know each other, that creates some of the attributes of home by creating familiarity, belonging. So even though it's not your house, you can do that in long term care, and you can make a place be comfortable enough that people will feel okay there and not feel like they have to run away.

Susie Singer Carter: 38:29

Agreed. Don do you think, I mean, I have my opinions on this, obviously, but I think a lot of the risk management that is put into place in our facilities are financially driven because, and I think that you know, because you mentioned a story in your keynote about a woman who was visiting a place, potentially for herself, and said, Oh, that that courtyard is beautiful, and and the door was locked, and she said, Oh, they said, Oh, that's not for the residents. And she had why it's beautiful. It looks safe to me. It's just a nice little courtyard. It reminded me exactly of a place that when my mom, where my mom's living, I could picture it, and they said, Oh, well, somebody went out there and fell now no one's allowed out there, which is just bizarre, but it feels like that's a financially driven risk management move. Am I wrong?

Dr. Al Power: 39:20

It is, and that's the perfect example of how critical thinking gets destroyed. That was my good friend and colleague, Karen stoby, who told that story and and Karen had the brilliant answer. When the woman says somebody fell and got hurt, she said, Tell me, has anyone ever fallen indoors and gotten hurt before? So the idea is, if someone falls in their bedroom, do we say you can never be in your bedroom again? Or if they fall in the dining room, can you never eat again. So this idea that outside is some horrible place, even though it was a really designed safe courtyard. So once again, we're not applying critical thinking. And I think there are some drivers, the regulators are certainly a driver. And they give they give providers to be fair and impossible task. They don't respect a resident's rights as citizens and. They say, keep them safe at all times, but one of our rights is to accept risk, and so we're stuck in a in a catch 22 there. The other big one comes from from lawyers who are willing to sue for these things. Another big one comes from the media. If somebody gets out like your mom did, that will make the newspapers, and yet, the 1000s of people who are harmed by anti psychotics because the door is locked, never get written up in the media. Why aren't we talking about those as as fervently as we talk about the people that get out and

Susie Singer Carter: 40:30

we will be in No Country for Old people.

Dr. Al Power: 40:35

And then lastly, society too, I think often family members have unrealistic, unrealistic expectations. People, people move to long term care because they are, because they have risky situations, and long term care is meant to help that. But there are no guarantees. People have conditions like dementia, they are at the end of the life. You can't expect that someone is going to go there and they'll never fall and they'll never get sick, and then they may never try to leave because, because that's life, you know, it. I was just writing about this the other day. It's interesting to me that people, you know, we say in long term care, we're going to give great nursing care and great medical care, and we know people are going to get sick, we know they're going to die, and yet we're not afraid to say we're going to do our best, even though we know that that people are human, why can't we say that with dementia and with locked doors, we're going to do our best, and we know people are human, but we're going to do our best. And why can't acceptance of risk be part of an Advanced Directive? If I don't want a ventilator, can I also say I don't want to lock door and I'm willing to accept the risk of that? Why are right? You know, why are we talking about that so? But we

Susie Singer Carter: 41:45

should human rights. There is a human right, though, and I think that we have that, and we don't, we don't exercise it. I have a quote for you al to use for your chapter. Okay, here, I'm going to bring it into popular copy. It here. This is our the popular culture. I really talk to you about the song, Take on me by Aha, is one of my favorite lines in that song, where it goes it's no better to be safe or sorry. Either one is not better than the other, and I love that because it applies to love, it applies to risk, it applies to everything in life, either one is not better than the other.

Dr. Al Power: 42:23

I will try that. But I'm going to warn you, when I wrote my second book, I quoted a lot of people in a lot of places. And of course, I quoted, you know, music, all this stuff. The only place where I had to pay any royalties, and I had to pay a lot was for two lines of Beatles songs. Maybe, aha, will be cheaper. We'll see fair use. I don't know. It's a great, it is. It's a great. And that is the catch 22 and the idea is, people want perfection. There is no perfection in life. You know, to come out to California, we had to get in the car and go the airport. We had to get on a plane and fly here, you know, to go to the beach, you know, I had to sit in the sun. I had to go in the waves. You know, there could have been a riptide. You know, lots of things could happen, but I am balancing those risks with the potential for benefit and saying which one is greater. And so what we have to do is we have to make the potential for benefit greater the the potential for risk, and that's what our book is all about, is how to maximize the upside by going through these, what we call practical pathways to inclusion. So it's not just about opening the door. It's about what does an organization do to prepare and to create the best possible environment for people to be happy and and to be able to get outside in the in some sort of a some sort of a relatively safe way. And that may involve technology. It may be GPS type things. You know, we're not going to talk about specific technology, because it'll all be obsolete by the time the book comes out, but we'll talk about the principles behind choosing technology so that people can then take that look at whatever products are out there five years from now, or whenever they happen to read this and then know how to choose wisely.

Don Priess: 44:06

And this is the most difficult time, because you don't have huge track records of this, where you have some you have some track records. So when you family goes into a facility, family goes to facility and says, okay, but this we don't lock. There is no lock here and there. Well, wait a minute. What happens if they do walk through that door? Are there safeguards or anything in place that say don't it's it's okay, you know? Jennifer

Dr. Al Power: 44:32

and I started, yeah, Jennifer and I started this book, and then we brought Pat spring on his third author. Pat was the CEO of Carroll Woods retirement community in in Chapel Hill, North Carolina, for 30 years. They are on on dozens and dozens of rolling wooded acres. They have a pond, and there are no locks and there are no gates, and they have people with dementia and people without dementia. And she was a CEO for 30 years, and they continue along these ways. So she is bringing a lot of the practical. Aspect of, how do you deal with these things and and so part of is the all hands on deck approach, because they are a community. They everybody knows who the people at risk are. If somebody sees Mary Smith walking out the door, it could be somebody working in housekeeping. It could be a receptionist. People know who to watch out for and what to do if they see somebody, how to accompany them, or how to get somebody who can accompany them to find out what they need. So it's so you once again, it's it's about it takes a village, as they say, it really does to do this. But and she has an amazing history. And we also interview several people in the US and Canada who have successfully unlocked their doors, and who tell their stories. They tell their stories of of the failures, you know, and what they learn from it. They tell how the struggles, but they also tell the great success and how it improved people's lives to do so. So we'll have, we'll have plenty of those stories. And I know memory care community, we're looking, yeah, it's, you know, people market memory care. But if you look at at long term care and assisted living in the United States, I haven't got the numbers in front of me, but a large majority of people with dementia in those two types of communities are living in integrated, unlocked parts. So we have selected people who live in memory care, and yet the majority of people dementia do not live in locked memory care. And so if they can do that. Let's figure out how the rest of them are doing it. And and you know, even if I go into a memory care place, the majority I've been to, there might be 30 people living there, and there might be people who you'd have to worry about if the door was unlocked, but they're usually just a few. You might have 30 people in there, maybe four or five of them at most would actually get into trouble if the door were open. But we're locking all 30 of them up instead of care planning and individualizing a program for those five people. And that's where the system is important, because rigid systems create a one size fits all. Type of approach fits all, fits nobody that that's about.

Susie Singer Carter: 46:56

It doesn't work in any situation. It doesn't work in education. It doesn't work in medical it doesn't work in anything. If it did, there'll be one size clothing, right? I mean, it doesn't seem perfect. It doesn't work. I want to say that when I was under two years old, because I believe, moved from this house that I'm thinking of. I was 18 months and I used I was I walked really early. Can you imagine that I walked like, I think my mom said I was, like, seven months old. I would climb out of my room and I was out. I out the door. I wanted to go places and the

Dr. Al Power: 47:29

knowing, you know, I guess I can believe that, right?

Susie Singer Carter: 47:32

And so my mom, I opened the door. My mom said that she couldn't keep it locked. The neighbors all knew me. I went to the neighbor next door, because she had teenage kids, and she made breakfast early. I was going to go get pancakes, so I come over there, I take my diaper up, and they go, they call my mom and go, Susie's over here. She needs a diaper, and we're giving her breakfast, right? I mean that it was the community, because that was who Susie was, and Sue and they and, you know, I'm not saying it was the safest thing my mom did, but I'm just saying like I was a happy little girl,

Dr. Al Power: 48:06

and let's go back. Let's go back hundreds of years. You know, neuro diversity, including dementia, was kind of an accepted part of society. You had, you know, Tom sitting over there in the corner, and that's who Tom is. We didn't lock him away at some point. And you can read Michelle Foucault, I supposed to understand all this, at some point, we started locking people away. Started creating systems of confinement for people that were not normal, like our prison systems. Yeah, exactly, yeah, but, but this is about accepting diversity in society. And once again, if you look at dementia as a cognitive disability through that lens, we know there's disease there, but every disability is caused by a disease, an injury, a condition of birth. So why can't you say, Yes, dementia is a disease that does involve disease of the brain or injuries, but it also can be viewed for the social model of disability lens. And I often use the metaphor, you know, if we had a person in the wheelchair who had to fly the stairs and no ramp, we wouldn't ask them to use the stairs, but we ask people changing brains to conform to our systems or we or we lock them if they can't, and and if the person tried to use the stairs and got upset, we would never say that his his anger is a symptom of his paralyzed legs. And yet we say that the anger of a person with Dementia is a symptom of dementia. And so, so, my God, so true. My My greatest mentor, the late Richard Taylor, who lived with Alzheimer's in the first time I met him in person. You know, the the keynote statement he made, made that stuck with me is, I'm not dying of a fatal disease. I'm living with a chronic disability. And those two shifts from dying to living disease to disability changed my world when I heard him say that

Susie Singer Carter: 49:46

amazing. And isn't it like we put so much stock in memory? Like remembering, we do it with our friends and family. We say, Well, I told you that. Don't you remember? Oh, my God, you have no memory. Like, what's wrong? With you, you know, to someone who's doesn't have a cognitive disease, we put so much, you know, stock in it as if it makes you smarter or better or whatever. And it's like, you know, I say memories are so yesterday, because who cares, right? I mean, at some point it doesn't really matter. Like, you know, I learned from one of my other mentors, which is, you know, Judy Cornish, but the Don method, who taught taught me when I was as my mom was progressing, instead of making my mom have to think about who she was seeing, when I walked to the door, I let her know, Hi, Mommy, it's your favorite daughter. I'm here. Well, I'm your only daughter, but I'm still your favorite daughter. It's Susie, so she wouldn't have to think about it and feel embarrassed and and we, and she always was so great. She'd be so happy to see me so and that was that was a game changer for me. And

Dr. Al Power: 50:49

you know that my Karen Scobey, who I mentioned her original career, is an improv comedian, so using improvisation skills, but yes, and approach to things, and another person, if you haven't had her on yet, Anne Basting, MacArthur Fellow, who has been she wrote a book called forget memory and talking about exploring creativity, you know. And she has a whole, a whole website called time slips, where she shows different ways to engage people with very poor, you know, semantic memory in creative endeavors and how you can engage people to do things that you might not have expected, and and so there are a lot of people who are Pia contos, I just saw come up on LinkedIn using dance and theater and and she and Sherry Dupuy and other people in up in Ontario, or we're part time, are engaging creativity for people with dementia, there's so Many different approaches. And when you just look at dementia as a narrow you know, Can you spell the word world backwards? Do you know what day it is? You know? Then all of a sudden you start seeing less of a human being, and you expect less. And there's another self fulfilling prophecy, you don't provide an environment where the person can thrive, and they don't, and you say, well, they had to mention, what else And

Don Priess: 52:03

what's more, what's more important than right now? What is more important than this moment and making this good as it can be? Yeah, people

Dr. Al Power: 52:11

with dementia a couple things better than we do. One of the things they do better than we do is we live in the moment. You know, we pay a lot of for mindfulness training and yoga and Qigong and and all the things that we do. And yeah, the person with dementia can be there in the moment. And if we can learn in the moment, we can get things from them in conversation or in interactions that we wouldn't get if we're just focused on our tasks. And that's another thing I teach. Often I

Susie Singer Carter: 52:35

say that spend time with someone with dementia and they are be your teacher for them, because they can only live in the moment, and it that's so beautiful. That's all that matters, really at the end of the day, you know? I mean, it's, it's, it's just so important, and it's actually such a beautiful way to to view life that I learned so much from my mom through this journey. I think anybody would if you just slow down, people in

Dr. Al Power: 53:01

dementia are our best teachers, and how they care. And, you know, someone, someone said to me, once you know, well, well, why bother if they're not going to remember this, why bother to do this? And I say, you know, imagine, imagine, go back to your high school years, you know. Imagine there was a Saturday night when you without your friends, and you had a great night. Do you remember every Saturday night at the age of 40 or 50 that you had in high school that you enjoyed, and if not, does that mean you shouldn't have gone and done it back then? Because if I told you I'm from the future, you're going to forget this night when you're 40 years old. So So don' Both bother stay home and read the book. Would you have stayed home? Of course not. Because life is about experiencing and as I get older, people that, people like me, who get older, realize that the moment becomes so much more precious than than, you know, the future or the past. Yeah, we're

Don Priess: 53:51

saying, you know, they don't remember here they but they do remember here. They keep it. This is where, this is where their memories are. Now,

Susie Singer Carter: 53:59

Don is pointing to his heart, in case you're not for those of you listening, yeah, and it's like it's also the dopamine that is released. You know, dopamine is, is, is it makes you feel good. And so what? What better medicine than to go in and say, sing a song, would hear someone you love, or read something that they love and and and tell them how much they're loved and make them laugh like that was my joy. If I could make my mom laugh, I was, you know, six, six.

Dr. Al Power: 54:29

You know, we haven't really, we haven't delved deeply into the approach I've been using. But, but those joyful moments and those engagements, regardless of memory, they fill the different domains of well being that increase the reserve and resilience of people with dementia so they don't get pushed to the point where they have crisis reactions and so that really, my approach is all about, you know, using seven different aspects of well being and working proactively, not reactively, to keep those glasses full so that i. Um, so that the person doesn't get to a point where these crises happen. And so, you know, it's not just joy, but it's autonomy, it's security, it's meaning, it's growth, it's identity, connectedness. You know, these are all things that all human beings need, but we've never been taught how to proactively put these in care plans. And once we do that, we find that we not only, instead of just reacting and calming people in the moment, we actually prevent that distress from happening in the first place. Because the root cause was not the brain disease, it was this lack of well being and the system and this education system that didn't teach people that that's still critically important, even if you live with a condition like dementia.

Susie Singer Carter: 55:40

Can you just talk about, you talk a lot about, you know, besides lock doors and, like, you just said, autonomy and, well being, like, the segregation of people with dementia. And how does that work? What? What is that the cause of and why do we do it?

Dr. Al Power: 56:01

I think a lot of it is stigma and fear. You know, we we fear dementia. People say it's more feared now than cancer. It's the number one, the number one feared condition for adults. And we don't understand people and and we don't want to look at it, because it reminds us of what could be a potential future for ourselves. We are taught that these people, you know, have behaviors that they some people think that they can be dangerous because they have this condition. And so we kind of we, we kind of want to not have to have to engage with that in our daily lives. And some of the most stigmatizing people are older people. So you will see in retirement communities people saying, I don't want those people around. Even some people complain that there are too many walkers or too many wheelchairs in the dining room, because once again, you know, ageism was, was defined years ago as as a prejudice against our feared future selves. Yes, I think that has a lot to do with this. And once again, it became a marketing ploy to tell people this is better care. And in our book, we will look at all the studies and show how it is not better care. In many case it many cases, it can lead to more harmful effects to separate people away from other people. So, so a lot of it is just misunderstandings, really, and that's where education is so critical, wow,

Susie Singer Carter: 57:29

so, and that really is the key, right? It's really the key is the education for and for people like stigma is such a big problem. I saw it in not only my my family and my community, I saw it in the healthcare system, you know, where just the misunderstanding and the stigma of somebody with dementia or any cognitive, you know, issue, you know, mild cognitive issue, even you know, the lack of patience, the lack of understanding, The lack of respect, yeah,

Dr. Al Power: 58:00

yep, I was speaking for the Alzheimer's Society up in Minnesota, doing an annual symposium. And after I gave my keynote, the woman came up to me in the audience, a community member, and she said, You know, I've just been diagnosed as having mild cognitive impairment. Now we know mild cognitive impairment the majority of people do not progress or go back to normal in their testing in years down the road. It is not you know, given that you're going to get Alzheimer's, but she was labeled as having mild cognitive impairment. She said her family was already saying you can't do things anymore. We have to take over for you based on that number. Once again, when you look at people as a number and as a certain set of very reductionistic skills, then you don't understand the capabilities people have. You know the woman who can't tell you where she lives or the names of all her children, who can sit down and play the piano by ear and improvise as she does? I would, you know, I've seen, I've seen people who can do that. So we're not, we're not viewing people properly, and therefore we're not giving them the opportunities that they need to live as well as possible, in spite of

Don Priess: 59:04

and when you're and when you, when you, when you segregate people with them and they, it takes away all these other people who could be talking to them, who could be, you know, in a different way than then as a community, yeah, who can't communicate with each other. Put them in places where they can communicate. You know, you look at some of these countries where they're having college students live, literally moving into facilities and living there, yeah, as opposed to, you know, to say, no, let's put all the old people over here, and let's put, you know, the segregation makes no sense. And the

Dr. Al Power: 59:39

benefit is, yeah, oh yeah. Many people find older people who are retired, who may feel like they're not being as, you know, doing as as much meaningful, purposeful work as they used to. They have a they can have a caregiving role. They can they can actually help support other people that have other needs and and as you say, it's beneficial both ways. I've. Gain so much the people I've interacted with who have lived with the diagnosis that that it's it's about relationships, and it's about relationships being bi directional and and benefiting all parties Absolutely.

Susie Singer Carter: 1:00:14

And we breed that fear by by segregation. We breed it like even with children. I remember bringing my friend's daughter, who was three years old, to visit with me with I was taking care of her for the day, and I brought her to visit my mom. I thought, Oh, that would be so nice for both of them. She was so petrified walking in that place, I could tell she had never seen other people. And my my granddaughter, yeah, go on. I I've

Dr. Al Power: 1:00:39

often said this, that segregating people with dementia is kind of like smoking. It's easier to not start than is to stop once you start doing it, because when you when you do have that block separate area, you are telling the other people who live there you're right. Those people don't belong with you. And then when you try to open it up, you face the consequences of the hole you've dug for yourself by perpetuating that stigma, you're absolutely right

Susie Singer Carter: 1:01:03

100% I mean, am I like I was going to say? And you you've seen it in because I included in the documentary with my two year old granddaughter, who only saw my mom on Zoom because it was during COVID When she was born, and when she finally got to see her, she wasn't afraid at all. And here's my mom with very high acuity at this point. She climbed into bed with her, laid her head on her, looked at her, laughed, made her laugh. They kissed each other, and she was like, Nanny, Nanny, Nanny, Nanny, not a fear in her, not a fear. And I think that's really healthy. That's

Dr. Al Power: 1:01:36

why intergenerational engagements are so important. There's a there's at least one nursing home. I believe it's in Kansas. It actually has a kindergarten embedded in the home. They have a little sort of schoolhouse built, and they spend some of the time in there doing lessons, and some of the time doing things with the people who live there. And like they'll do morning calisthenics, they'll take the hands of somebody, and they'll do calisthenics and and the physical therapists say that the kids get better range of motion from the elders there, than than they do in physical therapy sessions, because they're working with kids, and they're doing all this stuff, and

Susie Singer Carter: 1:02:08

that makes so much sense. Great. Yeah.

Dr. Al Power: 1:02:12

Korea, Korea, South Korea, has been one place that has, for many years, been introducing, you know, connecting, connecting teenagers, in particular, children with with older people, with people with dementia, with people in long term care, to try to help them have better understanding, reduce stigmatization of the older generation.

Susie Singer Carter: 1:02:33

I love that. Okay? I have, I know we could talk for like 17 hours. I want to talk about one thing that you touched on in your keynote, which was about the the fact that we don't, and this plays into community. We don't have enough people to care. Yeah, right, yeah.

Dr. Al Power: 1:02:53

For all the other arguments we you know, we argue civil liberties, we argue it's not better care. We argue that it's a cause of distress, all these different things. We argue that it's a one size fits all. That isn't true of dementia, but, but one of the arguments that that really is not so much philosophical as is mathematical, is the fact that we are aging globally. And in 1950 there were approximately 12 working adults for every retired adult in the world. And in 2000 that went down to nine to one. And in 2050 they will. It's projected there will be four working adults for every retirement adult. So we can't it goes beyond dementia. It's really aging. We can't just keep building separate campuses for older people to live on, because there will be no one to build and staff and maintain them, because we have still have lawyers and teachers and construction workers and firefighters and all the other people, everything, society and filmmakers, you know, producers. Yeah, exactly, so, so, so aging in community is the only solution. And even when you talk about the most beautiful places that you can think of for people with dementia, we can't just accommodate the increasing number of people with dementia by separate, gorgeous, even open, inclusive campuses. We have to find ways to keep people in their communities longer. There will always be some congregate living, because not everybody can live in their own house or apartment until the day they die, but we've got to do much better at it, and that's why the recent discussion that was raised in the political campaign about expanding Medicare to to cover more home services. These are important conversations, because we do not have enough support for living at home. You know, if you got a lot of money, you can get care aids or nurses, or if you just been in the hospital, you know, for a week or two. But beyond that, it's very difficult to get the support you need. Communities are not designed in America for aging. Ironically, some of the best communities are places like New York City, where you have a grocery store in the corner and you have public transport. When you live in a suburb and you can't even get a bottle of milk without hopping in your car, you're in trouble. And so we've got to really figure out, how can we better how. Create communities that embrace and support each other as we age, and part of that is the natural return requirement. Communities, the the village models, all the different things that are out there. There's, there's no one size fits all. Once again, it's, there's many different varieties. But we need to engage our politicians, our civic designers, our our planners in our community, in understanding better how we can accommodate ourselves as we age, instead of just thinking about some other place we can move people to.

Susie Singer Carter: 1:05:30

I think it's out, yeah, I think, I think it's, it's the collective consciousness that we've created that it needs to shift. And like you said, you know, I think Ashton Applewhite says it to who we have in the in our documentary, who's a real advocate for, you know, anti ageism, who said just what you said, it's, it's really, it's really a bias against your future self, and that is a disservice for all of us. And it, it really does. It is going to take the community to to take care of each other and and get back to what what's important. We are so individualized. We've individualized ourselves into oblivion, basically. And and

Dr. Al Power: 1:06:13

one thing I've said being a baby boomers, that I think baby boomers have the power to transform this, but first, baby boomers have to admit they're aging, and then once they do, hopefully they'll change things. But it's, we're kind of a tough generation.

Susie Singer Carter: 1:06:28

Well, I mean, let's, let's talk to those, to all the millennials and Gen Z's out there, who also are, you know, it's going to affect everybody. So let's, you know, get there. It's going to get there. So well, is there anything else that you wanted to talk about? We're going to have, we're going to have al back with his partners,

Dr. Al Power: 1:06:48

come back, and we'll talk about the book more specifically as we go along. And we'll definitely do that. I mean, yeah, we could talk forever. Such a delight that Susie and Don that's just spending time with you because we hit on so many important points, and you ask so many critical questions that too few people are asking in politics or in society. And so it's great to have a forum to do this and, and I'm really looking forward to No Country for Old people and and hoping that will also spark discussion and get people, get people up and talking, because that's what good good filmmaking. Does it makes people think? It makes people think that's all

Susie Singer Carter: 1:07:26

we need. People can Yeah, just talk. We can act, yeah. We love you, yeah. I mean, we love you so much, and we are so, so grateful to have you on our show. And you know you, of course, you're going to be back and we're going to continue the conversation, because there's so much more. Yeah, there's so much more to talk about. And, but, you know, do, do look up Al, all of his wonderful work that's out there. I mean, he, when I was first doing the documentary, you came so highly recommended from everyone that I talked to. And so, you know, but, but who knew you were such a cool guy, a cool dude, and, you know, a musician, and we love that. You know, I'm all about the music, and you know, all every all the information, how to reach out, how to get all his all of his books, and watch his keynotes, watch his keynote. It's so good, and then we'll be in the show notes. So super. A lot of love here a love test, and that's why,

Don Priess: 1:08:28

you know, we run, yes, we're going to continue this love fest even after we hang up. Because one reason for that is that love is powerful, love is contagious, and love conquers all we do. Thank you for watching or listening or wherever you saw us today. And if you like what you saw, please subscribe and share and all those fun things, and we're going to see you next time and have a great one.

Susie Singer Carter: 1:08:53

Bye. Everybody love you. Take care. Be good, be fun. And, you know, do some risky things. Yeah,

Don Priess: 1:08:59

do it. Bye, bye. Bye.

Angela Fairhurst: 1:09:11

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Don Priess: 1:10:16

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