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Welcome to the Memories Podcast. I'm your host, Jackson Nguyen, and I am a biochemistry senior at Worcester Polytechnic Institute. I am also a trained community representative of the Massachusetts chapter of the Alzheimer's Association. Memories is a podcast/interview series that features in-depth, one-on-one conversations with leading global experts across a wide range of fields to explore Alzheimer’s disease (AD) and dementia from numerous lenses. Through these conversations, I hope to deepen public understanding of AD and share the voices of those working to make a difference around the world. Memories is a personal passion project of mine where I hope to engage in fruitful conversations with experts to learn more about Alzheimer’s and spread awareness of its devastating condition to my community. Thank you for joining me!
Jackson Nguyen (00:06)
Hi everyone, welcome to the Memories Podcast. I'm your host, Jackson Nguyen, and I'm a biochemistry senior at Worcester Polytechnic Institute in Worcester, Massachusetts. I am also a trained community representative of the Massachusetts chapter of the Alzheimer's Association. Memories is a podcast interview series that features in-depth one-on-one conversations with leading global experts across the globe to explore Alzheimer's disease and dementia,
from numerous lenses. Through these conversations, I hope to deepen public understanding of AD and share the voices of those making a difference across the globe. Memories is a personal passion project of mine where I hope to engage in fruitful conversations with experts to learn more about Alzheimer's and dementia and spread awareness of its devastating condition to my local and global community. Thank you so much for joining.
Jackson Nguyen (01:06)
In today's episode, I'm humbled to welcome a very, very special guest, Dr. Alan Power. He is an internationally recognized educator and specialist in caring for people with changing cognitive abilities. He's a board certified internist and geriatrician and has been practicing for 41 years since 1984. He's also a clinical associate professor of medicine at the University of Rochester.
and a fellow of the American College of Physicians and American Society for Internal Medicine. He's also a published author and internationally respected for his work in challenging the use of anti-psychotic medication for people living with dementia. In fact, his book, Dementia Beyond Drugs, Changing the Culture of Care was named a 2010 book of the year by the American Journal of Nursing. He frequently travels around the world to advocate for transformative models to revolutionize our culture of care for those living with dementia.
It is truly a privilege to have you here, Dr. Power. I appreciate you so much for joining me this morning.
Allen Power (02:03)
Thank you so much, Jackson. It's pleasure to be here.
Jackson Nguyen (02:07)
Thank you. Before we dive in, do you have any questions for me or anything you'd like to add before we get started?
Allen Power (02:12)
No, no, thank you for all the all the comments. I'm happy to have been introduced that way and looking forward to our conversation
Jackson Nguyen (02:19)
Awesome. So I guess to get started, how are you doing today, Dr. Power? What have you been up to recently?
Allen Power (02:25)
I'm doing great. I'm also involved in music and I was helping a friend with a performance yesterday, so I'm a little bit hoarse from a combination of giving seminars and singing songs and doing different things this past week, but I'm recovering nicely.
Jackson Nguyen (02:34)
Yeah.
That's incredible. Where are you joining us from today? In Rochester?
Allen Power (02:41)
I live in Rochester, New York. Yes, that's from my home. I most of my time in Canada working these days, but it's an easy drive over the border, so not too hard from here.
Jackson Nguyen (02:43)
Yeah, okay.
I
see. So you've been practicing for over 40 years. If you have to reflect back to your younger days, what has inspired you to become a geriatrician and pursue a profession where you not only care for those with changing cognitive abilities, but also advocate for transformative models of care?
Allen Power (03:07)
As I look back, I guess what I think of the most is somewhere along the line I had an openness to not get locked into a particular pathway and to explore some new ideas. And I really kind of backed into geriatrics, but discovered a passion and then backed into working with educating about dementia and about approaches to dementia, about...
transforming culture of care, everything kind of came along in a series of unexpected forks in the road. And I've just learned more and more that when something speaks to you sometimes it's good to explore it. And that's kind of been the story of my life. I don't actually practice. I haven't in about 15 years. I've been doing education, consulting, speaking full time. And I loved practicing medicine, but you know.
people had an expectation when I started doing this full time that that I would probably go back to doing that. And they say, well, you're going to go back to practice some point. I say, no, no, no. You know, I loved it. But but I probably had to do that to be able to do what I'm doing now. but I'm happy where I am. And so I think when people people often come to me because they think I'm pretty happy and they may be frustrated with their current position and they want to know what else they can do, I just tell people to.
Talk about what you love and be open to people coming to you and suggesting things and trying things because it's been for me approximately every seven years I've had a deviation in my career path and it's always led me to a new and exciting place. I can't complain.
Jackson Nguyen (04:35)
That's incredible. Next, I want to shift and discuss this paradigm of using antipsychotics in dementia care. And so as you describe in your book, Dementia Beyond Drugs, like our existing care models for those living with dementia has evolved to favor a medication driven approach where caregivers, you know, they rely on these pharmaceutical interventions like antipsychotics, sort of like as a bandage approach to manage these symptoms.
And so consequently, you know, they ignored some of the remaining components that come with dementia, including a person's need for meaning, spiritual reality, relationships and experience. I would love to hear your perspectives on how this medication driven approach has come about.
Allen Power (05:18)
I'm maybe not the best historian, but I've read a lot about this, you know, and it's been that, you know, the scientific research into different forms of dementia has been beneficial in many ways, but it's been kind of a double-edged sword. You know, for many, many years, people that began having cognitive changes were seen, you know, we use the word senile. People are considered to be senile.
And it was just something that was felt to be a natural part of aging. We know it's not a natural part of aging. And it was, you know, back maybe about 50 years ago that people began to really say, you know, no, this is, this is, there's really something pathological going on here. We need to label this. We need to start, start looking into this. And even when I was in training, we made a distinction between people who were under 65 and over 65. It was a very, it was a very,
arbitrary distinction, but when people had the characteristics changes of Alzheimer's disease, when I was in training, we only use the term for people who got dementia when they are under 65. And people over 65 was called senile dementia, even though pathologically they were the same. And at some point around then, and you know, in the of the eighties, late seventies and early eighties, people said, no, really, it's all the same. It's all Alzheimer's disease. If it has that particular kind, we know there are many kinds of dementia, Alzheimer's being the one that we see most commonly.
Um, and, and a lot of research came, a of funding came for research as a result of that. And, um, and, and so it was good that research was done and then we know more about it, but maybe the downside of getting rid of that, that not great term, senility was that it moves people out of the realm of I'm an older person and I'm still kind of part of society. Um, uh, but I'm different and we accommodate me.
to, know, I have a disease and we have to fix this. We have to find out the cause of this. And what it's done is it's taken older people in general, because dementia is reflection of how we've seen aging. There's been a parallel pathway between aging and dementia. So number one, we've medicalized aging and we've medicalized dementia. it is, and it's not that there isn't a medical problem, but we only see dementia through a medical lens.
we see what's wrong with the brain and we measure people by what they can't do. We look at decline, we look at inability, we look at disease. And when you look so narrowly and then you see people who are getting upset or distressed, then it's natural to say, they're distressed because they have a disease. And since they have a disease, there must be a pill that will make them better. And so we've gone down this narrow road of this is the way we treat, know, we've first of all called distress
behavioral and psychological symptoms of dementia. So we're blaming the brain disease for the distress and then therefore we have to come up with a medication to give people to make the distress less. So we've just gone down this path and that's where I've been deviating now for for over 20 years and trying to lead people in a different direction.
Jackson Nguyen (08:07)
the caregivers, I feel like they often resort to this pill as it's more quicker and more convenient. Like, is that right?
Allen Power (08:15)
Well, it is. mean, I don't think that people are bad people or lazy people, but what is required to really find other solutions are two things. We need to look at things differently. We need to take the time to engage the perspectives of an entire care team and to go through those exercises. And then we need to come up with a plan that looks at the person from a more holistic standpoint. It meets needs. And then on top of that, the really hard part, particularly in care environments like a nursing home, is that
The system is not set up to meet those needs. It's set up for the efficient delivery of medical and nursing care. And so you have to start making changes to your system of care. And that's where a lot of people trip up in formal care environments because that's a lot of work. And once again, to start down that road of changing the way people get up in the morning or the way they get breakfast or changing the way we bathe people or the way we have conferences before we give a pill, is obviously the system drives people toward the simple task.
Jackson Nguyen (08:56)
it.
Allen Power (09:10)
which is to give a pill and get on with the other tasks that you're being asked to do. And so it's not that we have a lot of bad people, but we have good people working in a very task-based system that doesn't really enable them to do differently without a lot of...
Jackson Nguyen (09:27)
And like, of course, these medications, they can be helpful in managing symptoms in the short term, but can often come with side effects and risks such as sedation that may be more harmful than good. The sedation question, which was how you framed it in your book that I found particularly fascinating, like it's undeniably true that our patients like that were initially agitated on these medications simply just to sedated or they
are actually improving. Like staff mistaking for these relaxation.
Allen Power (09:59)
Yeah, and I'll go back through that a little bit. When I wrote the first book, Dementia Beyond Drugs, which first came out in 2010, I began by challenging myself. I said, OK, am I wrong? I didn't think these pills were helping people. And what was more important to me, not only did I not see a lot of help from the pills, whenever we found something that might help a person, that might get to a deeper root cause, we were able to make them a lot happier.
without using a pill. And it just made me wonder how many more people out there might be able to not have pills if we just understood better what they really need. And so the first thing I did in researching my book was to challenge myself by pulling all the drug studies that physicians were relying on to give these drugs. know, over the past several decades before I started writing and saying, okay,
What is the, what's the evidence behind antipsychotics and dementia? And I found a few things just to summarize. First of all, every single study that showed a benefit, every single one from decades past was sponsored by the company, Make them a Pill. Now that doesn't mean that there's anything wrong, but it introduces the potential for a lot of bias, not only bias in how the experiments conducted, how endpoints are measured.
But bias in what goes to press, you know, if you're a drug company and somebody does a study and it doesn't look very good, it's probably never going to be submitted for publication. So there's a lot of bias that comes from that. Getting to the effectiveness question and sedation question is quieter, better. We have people that can look calmer on the medication, but you know, going back to movies like One Floor Over the Cuckoo's Nest, we saw people look calm too. They weren't necessarily in better place. So how much is sedation? How much is true improvement?
Jackson Nguyen (11:36)
Mm-hmm.
Allen Power (11:38)
One the other things I found was that there was not a single test of antipsychotics. And still have yet to see one of those or other drugs that measures what I would call positive endpoints. All they do is they take scales that measure negative so-called behaviors and try to make them less. And so when you try to stop somebody from doing something, but don't show that they're happier, that they're more engaged, that they're thinking better, you haven't really proven that you haven't just sedated them.
we don't have a lot of good measures of well-being, a lot of good measures of positive attributes that we can use to measure these pills against. And our dementia research has never taken the time to create these things, which is one thing that we're trying to work on now is create better positive measures. So some people are obviously sedated. Some people are calm, it's that kind of lights on, but nobody's home calm often.
I use the word comatose in my book to kind of describe how people look to me. Now, when you read the studies, they will tell you that they recognize the sedation was occurring in a lot of people in the study. But they said that when they removed the people from sedation from the population and reanalyzed it, that they still saw significant benefit from the antipsychotics. So I said, OK, fair enough. How are you measuring sedation?
Jackson Nguyen (12:32)
.
Allen Power (12:55)
because sedation is a spectrum. It's not just falling asleep in your plate of food. all these most quoted studies, and we're talking about the newer studies with the second generation antipsychotics, they had people whose, back then we're using the Folstein test a lot, know, their scores were in the single digits. They had very advanced dementia. And they were measuring sedation. Every single one of these were measuring it by self-report. So people who often had word finding and communication difficulties,
people who might not even fully understand that they were on a study or what their pills were for, they were expecting to report on sedation. so once again, you know, what are we missing here? If you're using that as your true yardstick for what sedation what isn't. And the other bit of proof I point to is that there have been many organizations that have removed antipsychotics. And I've done it personally and often when you remove a drug, even in a person who does not look sedated.
you see people thinking and doing things that you didn't think they were capable of doing. And you realize that even below the level of being sleepy, the medicines are doing something that is affecting your cognitive function. And we know that they have anti-cholinergic properties. We know that they cause faster cognitive decline than people who aren't on the drugs. So there's a lot of harm there. And then we get into all the other side effects from premature death to heart disease and pneumonia and falls and movement.
disorders and all the other things they cause. So there's not a lot to recommend them basically and even in the short term I don't consider them helpful. I consider them a band-aid when you haven't figured out what to do but I never consider them a solution and I've you know among the people you might interview I'm going to be at the far end of the spectrum. People talk about appropriate use of antipsychotics and I've yet to find people who with dementia without psychiatric illness who I think truly benefit from these drugs.
Jackson Nguyen (14:42)
Um, and like in your book, you provided this really powerful example about this man named Charlie. I found really like interesting, like ultimately like Charlie, he was a resident in two different nursing homes, let's say with two different environments and culture of care and his wife like fell ill. So he had no one to come visit him until he got agitated and he got anxious. And in one nursing home, like stimulating, he did not give any him any meds and the staff observed his behaviors for a week.
And ultimately when his wife was better, she came in and Charlie felt better too. But the other nursing home, they didn't recognize that his wife and the unfamiliar staff due to like the changing shifts and such were contributing to his anxiety. So they called the doctor and then cranked up his meds. So he seemingly become less agitated. I guess the main message here is, you know, the medications were a confounding variable that produced his calm demeanor by the end of the week.
Allen Power (15:37)
Yeah, thanks. Yeah, that was that was a story I made up because I wanted to show how two different mindsets could interpret, you know, somebody's distress and interpret the effect or lack of effective fills in different ways. and ⁓ it so I called it a tale of two nursing homes. And the reason I gave the guy's name Charlie, I think I called him Charlie D in the thing was because Charles Dickens, of course, wrote a tale of two cities. So
Jackson Nguyen (15:50)
Yeah.
huh.
Allen Power (16:02)
little inside
joke when I wrote that. But yeah, just showing that we often misinterpret cause and effect. And the other thing we see is when we see people declining on antipsychotics, you know, it's a self-fulfilling prophecy because people with dementia decline. And so when we see that, instead of thinking the pills making them decline, we say, well, they have dementia. Of course, they're going to get worse. Of course, they're going to stop walking. Of course, they're going to, you know, start having cognitive decline. And we don't stop to think, well, maybe it's the pill we gave them that is contributing to this.
Jackson Nguyen (16:05)
Gotcha.
Allen Power (16:31)
just the underlying illness.
Jackson Nguyen (16:32)
So is there ultimately a fine balance between like pharmaceutical interventions and non-pharmaceutical interventions?
Allen Power (16:39)
I think that, like I said, I think that when the pills are used, to me, the only time I would want to see the pill used is a true crisis situation where there is imminent risk of harm. And then in the short term until you figure out how to get rid of that risk of harm. I think that it's, they never provide the solution.
And, you know, maybe this is a good time to slip into the other section too. And this is another controversial thing, but I think it's a very important distinction. That's the idea of the non-pharmacological interventions. If we get into book two, Dementia Beyond Disease, I start right out by saying that neither approach is the right approach. And I'm a little provocative there. I talk about the word intervention as being a bit of a trigger word that I...
Jackson Nguyen (17:13)
and
Allen Power (17:25)
trying to not use because, you know, reminded me of the old trend back in the 80s of holding interventions. I don't know if people still do that anymore, but some of you who has a behavior that we, you know, a friend or a relative that has a behavior that we consider risky, you know, goes to their gets invited to a friend's house and they're confronted by all these friends and family who, who tell them about what they're doing wrong and they need to get on track. And I think in a lot of way, our interventions are like that too. We take somebody who we think has a problem that we need, we need
to straighten out and we use a variety of things, whether it be drugs or non-drug approaches or different types of persuasion to try to get them in line with what we think is right. And interventions are often reactive and not proactive. So when someone gets upset, give them a hand massage. Well, that may calm them for the moment, but if we don't know the root cause, it's going to happen again, just like a pill. When it wears off, you're going to have to do it over and over again. And we've just...
It has that underlying assumption once again that these behaviors are caused by dementia and they're inevitable. So we just do what we can to kind of kick the can down the road and calm the person for the short term. And I think what, and I did that too. You know, I had my whole list of non-pharmacological interventions early on before I wrote my first book because I didn't know what to do differently either. And it wasn't until I was giving a talk once out in the Midwest, out in Iowa, where I heard a story that really made the penny drop for me.
Jackson Nguyen (18:38)
.
Allen Power (18:47)
And that was hearing about a man who moved into an assisted living memory care place who had dementia, had Alzheimer's and he was not really using words much anymore. And he moved in and the day he moved in, there was a lounge with a back door into their backyard and he tried to exit that door. And they didn't want people going outside unattended and they kept trying to redirect him and they tried a lot of different non-pharmacological approaches, but nothing held him.
He just became more insistent and kept going for the door. And so after a few days of this, the manager said, listen, we haven't had our care plan yet. We need to find out more. But in the meantime, you know, it's a nice day out today and we have a fence around the yard. So when he goes to the door, stand back, let him go and just watch him and see what happens. And so he went out the door and he walked to the back fence. And this is Iowa. There was a pasture with a herd of cows and he stood there and he watched the cows for about 10 or 15 minutes.
and he came back inside on his own, sat down and was calm all day. When they had the care plan with his family, they said, you know, he was a farmer all his life and he often started the day by checking on his herd of cows. And he probably saw them out the window and felt the need to do this. Now, I don't tell it because they found a clever situation for a retired farmer. I tell it because even with our non-viralogic approaches, if someone tries to do something,
You know, we might try a room with therapy. We would try a hand massage. We might try personalized music. But what if they want to check the cows? Those aren't going to work any better than pills because we don't know the person and we don't know what they need, what's driving them. And in my case, because I'm using a well-being framework, I think often what we call one met unmet needs are often more globally challenges to different aspects of universal well-being. And so, for instance, a couple of them are autonomy.
or meaning. If you don't have choice of control in your environment, if you don't have a sense of meaning and purpose in your day, and that's triggering your distress, then once again, there's no generic non-pharmacologic approach that's going to help that. We can occupy your mind for a few minutes, but you're still not getting choice of control. You're still not getting meaning and purpose. so I think it's not that it's not good to avoid drugs.
But I think even the non-pharmacologic people, as I say, are often trying to provide person-centered care, but from a biomedical mindset. They haven't abandoned the idea that we need to intervene with something that's caused by dementia and calm the person, instead of saying, how can we proactively help that person? And that's where my whole wellbeing framework comes from, which we'll get to, sure, during this conversation, where instead of just reacting, what we do is we look for deficits in these areas of wellbeing and we proactively fill them.
Jackson Nguyen (21:20)
Mm-hmm.
Allen Power (21:28)
throughout the day, good days and bad, so that the person has a better reservoir of well-being that pulls them away from being in such a crisis mode all the time.
Jackson Nguyen (21:37)
Gotcha. And with these non-pharmaceutical inventions, I think that, like, in terms of how we're executing them, it's because, for example, like with music therapy or aromatherapy, and the main thing that we need is the staff and the human connection. But like a lot of times I feel like, because at nursing homes, they tend to be like understaffed and, you know, if there's like 40 residents in the unit.
And there's only like, let's say a few staff to actually run the activities. And so not all the residents can be attended to. And so like sometimes, you know, they could be doing some like do a music session for a brief, you know, five, 10 minutes. And that of course, you know, only provides that short-term, you know, alleviation to that agitation, let's say. And so it's like in terms of long-term, it's not going to like, I really resonate with how you said finding meaning and purpose is going to be really key.
allowing that resident to help them feel better and find more joy and meaning in life.
Allen Power (22:36)
It's interesting that you're using music because music is a great example that opens up an entire can of worms here. First of all, when you look at well-being, music fulfills so many different aspects of well-being. The well-being framework I teach from is a framework for overall well-being for humans that was developed in the white paper by the Eden Alternative Organization. what I did when I was writing, I mentioned it in my first book. And then in my second book, what I decided to do was
to take that framework and I kind of reordered it in an order I like to teach from. And I just applied, I looked at the experience of dementia through those seven domains of wellbeing as they call it. And the domains of wellbeing that they identified are identity, connectedness, security, autonomy, meaning, growth and joy. And the idea is that everybody needs these. doesn't matter your age, your nationality, your ethnicity, your faith tradition.
Or whether you live with a diagnosis, even dementia, you still need all these seven things to live well. And there are other frameworks and they're all fine. I just had to choose one I liked. And the key is not the exact framework, but how you use it proactively in supporting people. But just using music, once again, as an example, you know, it's not just a matter of having a generic music program because we all have our own feelings about music. I have very particular, I have a wide range of musical likes, but they're still particular in a way. I wouldn't want to...
Jackson Nguyen (23:56)
you
Allen Power (23:57)
have someone else's idea of music thrown at me, you know. So music is identity, it's connectedness, it could bring you security, it's autonomy if you choose it, it's meaning, it helps you grow, it's joy, it's all those things. So it's really great, but by the same token, to, as you say, the struggles in an institutional model of care to provide that in the way that fits for that individual person are really tough.
Jackson Nguyen (24:04)
Thank
Allen Power (24:21)
because we do tend to depend on activities professionals to do all that stuff. Nobody else sees it in their job description or has time in the day when they can do that. And staffing ratios, you know, make it difficult in our current system to see how that can be done differently. So this is where that whole organizational transformation kind of intersects with this because
Jackson Nguyen (24:42)
you
Allen Power (24:43)
you can do it with current staffing and here's a little side note, we have to do with current staffing because it's going to get worse in the future, it's not going to get better because we're a population of aging, we're not going to have that ever. But our system is inefficient when it comes to doing these kinds of things, it's inflexible, it only allows for drive-by programming as I call it, where you get a group of people and you throw something at them and hope that it will stick with a few of them.
Jackson Nguyen (24:52)
Mm-hmm. Yeah.
Allen Power (25:08)
You need to create systems that are more flexible, that can be more individualized. You need to create more flexibility among workers. So for instance, when I worked at a home here in Rochester, one of our nursing assistants who loved going to church and loved singing in the choir would sometimes when she had free time, sit down with a group of residents and sing hymns with them. She just did it on her own, but nobody said she was goofing off. They were supportive because we were going down this culture chase.
Jackson Nguyen (25:09)
Mm-hmm.
Allen Power (25:35)
She wasn't an activity professional, but you don't have to be to sing songs with residents, you know? And so we need to create that kind of flexibility, that kind of individualization. And that means breaking down systems, and that's the hard work that goes in the background. But when you do that, you can have some magical things. And I tell some stories in the books that show some of the magical things that happen when you're able to do that for people. So it really is a system change. It's a larger part of it is creating the system where this can work.
Jackson Nguyen (25:39)
Hmm.
Allen Power (26:02)
And that's why I think people can't visualize how a person could not need an antipsychotic because they can only see it in their world. And in their world, that might be the only solution right now because that person may have needs that we can even identify, but we just can't meet them. Maybe it's somebody who just does not want to be woken up at seven o'clock. But if you're in a system where the breakfast trays come at 730 and everyone's got to be up and dressed, then that person's going to get woken up and they're going to be fighting every single day and they're going to be getting drugs.
Jackson Nguyen (26:14)
Mm-hmm.
Okay.
Allen Power (26:31)
And you know, all of a sudden you create a system where you have flexible breakfast and people wake up naturally and you can see those things disappear, not just in the morning, but all day. I've seen it happen many times. That's a system change. You got to talk to dining services. You got to talk to the nursing staff. You got to talk to housekeeping so that you can arrange for flexible wake up times. So, so a lot of it is forcing people with changing brains into seeing the world the way we do.
acting like we do, our rhythms, our schedules, our staffing needs. And I look at dementia through the disability lens and I liken it to wheelchairs. You know, if a person in a wheelchair came to a flight of stairs, they would be unable to enter a building because they can't take a wheelchair up the stairs. So what we do, we accommodate them. We create a ramp so that they can get in the building. And when we look at dementia that way, we realize we're not creating ramps for people with dementia.
Jackson Nguyen (26:56)
Mm.
Allen Power (27:21)
wherever they live, whether it's their own home or a nursing home, once again, we take the changing brains and we expect people to adapt to our way of doing things, our schedules, our rhythms, et cetera. And it's kind of like asking a person in the wheelchair to walk up the steps. And if they fall and get upset, giving them an anti-psychotic because they have a behavior problem. And that sounds laughable, but that's exactly what we're doing. We're not creating accommodations. When you accommodate the different rhythms of people with dementia, you don't have distress in the morning.
Jackson Nguyen (27:40)
Mm-hmm.
Allen Power (27:49)
You don't have sundowning. know, sundowning is caused pretty much by us, by us forcing people who are working hard to make sense of the world to follow our rhythms all day long. And when you do that all day long, if you're in a country where you don't speak much of the language and you're trying to understand people all day long, when are you going to have trouble? Four, three, four in the afternoon, you're going to get tired and it's going to get harder for you to cope with stress. But I've seen people cure sundown.
Jackson Nguyen (27:51)
Mm-hmm.
Mm-hmm.
Yeah.
Allen Power (28:15)
by simply changing the way we respect the individual rhythms of the people who live there, following their rhythms, not forcing them into rhythms, our rhythms, letting them rest when they're able to. I saw one home that did it in Canada by having 12 hour shifts. And they didn't realize this at the time. They just decided to do it that way. They worked seven to seven and they really feared they were starting a whole new support neighborhood for people they were trying to.
offload from the hospital during COVID who had dementia, who had had all this distress, were being restrained and given drugs and nobody would take them in the nursing home. And they said, we'll take them. We're going to use a different staffing model and a different approach. And they had 12 hours staffing. And when I talked to them and toured the place and I said, what did you fear most about opening up this neighborhood? They said, well, we feared sundown. We didn't know what to do about that. And I said, what have you found? And they said, we don't see it.
And you realize that in most places, what's happening at two o'clock, people are cleaning up, getting ready, doing sign overs, doing their tasks to get ready to turn it over. And all this activity gets people's, you know, gets people thinking, okay, what's happening next? Do I need to do something? Should I be going? People are putting on their jackets. Where's my family? You know, and when they're working seven to seven at two o'clock, they're just hanging out. And at that time, when we blame people three o'clock, four o'clock,
Jackson Nguyen (29:07)
Mm.
Mm-hmm.
Okay.
Allen Power (29:33)
for sundowning, there's no change over happening and people are calm. So it shows that yeah, the brain's involved because you and I can handle that better than a person with dementia, but we're the cause, we're the root cause, not the brain. And when we respect that person's brain and the rhythms, we can get rid of those things without having to give people drugs.
Jackson Nguyen (29:51)
I really love how you were able to put yourself into the shoes of a patient like or resident at the nursing home with dementia because you know patients are constantly stimulated in the hospital that's a vital unit the loud beeping sound of their IVs people change chattering in the background you know nurses and PCA they come in and they change like to turn them to the left you know turn them to the right and I personally observed how you know their nursing home that's treating patients with like
absolutely no dignity and like fully exposing their entire body trying to put like, you know, their Johnny on, you know, the changing of staff every like eight hours. so like with the 12 hours, it's, that would, be really beneficial to avoid that, prevent that sundowning, you know, like in this constant sense of unfamiliarity. And so sometimes, you know, patients, they want to communicate something and staff misunderstand so they don't get their needs met. And so ultimately these unmet needs,
like the result of all of these dementia associated behaviors.
Allen Power (30:50)
I think it's a lot of it. I mean, let's just take the medical things and put them in a side bucket. Sometimes people get a bladder infection and they get more confused or upset. That really, to me, in my experience, is a small minority at the time. Most of the time when somebody has some kind of expression, it's not just happening all of a sudden. It's something you've seen for a long time and you know they're not medically ill and they don't need some kind of an antibiotic or something.
There are a few other things there are sensory changes that occur with aging and with dementia and a lot of people aren't aware that sometimes sights sounds tastes smells feelings change I remember I've heard several people with with Alzheimer's tell me that The feeling of a shower all over their body is overwhelming and they have to like wash one limb at a time because the skin Sensitivity changes now if you put somebody in the shower and they get upset
And you don't realize that then you're gonna be giving them a pill instead of bathing them in a different way So these are important things to my friend Agnes Houston who had a Churchill fellowship she's had Alzheimer's for over a decade now and she she wrote a book and taught people about the sensory changes of the curb dementia and she also will survey nursing homes in Scotland as a volunteer with dementia to
Walk around, look at the lighting, listen to the sounds, look at the color scheme and the wayfinding and everything, and tell people as a person with dementia how good their design is and whether they need to change the amount of noise in the environment or the lighting or whatever. So there's a lot that comes from sensory changes. Often it's just a different way of communicating or problem solving because the person doesn't have all the memories they need.
People's brains aren't gone. They're actually working very hard to figure out the world and solve problems. They may not solve it the way you or I do because they haven't got the same information. And it may seem bizarre to us, but it's not necessarily a delusion or something. It's just that they come up with a different way of figuring out how to get what they need or how to solve the problem. And there will never be a pill, of course, that will help any of these things. These are just things that we have to understand. It may just be an expression of agency.
Jackson Nguyen (32:39)
Mm-hmm.
Allen Power (32:52)
You know, I'm in a situation that's totally out of my control and I'm trying to exert any control I can. And so unmet needs is a big bucket and people use it. Sometimes it's just who I am. Sometimes I'm just expressing who I am. Sometimes it's normal behavior that we're labeling. So for instance, the guy that tried to go out the back door, I tell people exiting a living area is not abnormal. We do it every single day. What's abnormal is locking a door and telling people they can't leave.
Jackson Nguyen (33:06)
Mm-hmm.
Mm.
Allen Power (33:18)
I'm giving a conference, say, someone locked the door of this conference room, how long would it take you to start getting distressed before, you know, there's no restroom in here, you can't get out the door, you don't know how long it's going to be locked. It's not abnormal. What's abnormal is that we'd lock the door. And of course, our new book is about unlocking and desegregating memory care. So we're taking it to the next phase. so a lot of it is reframing what's normal and what's
Jackson Nguyen (33:28)
Yeah.
Allen Power (33:42)
But when it comes on these, I put it, I, I, we describe it as a challenges to the well, the aspects of wellbeing because in my case conference approach and in my way of looking at dementia, I see that the vast majority of the time those aspects of wellbeing are not recognized, not fulfilled by our care approach. And even more so our care systems erode them further and make them worse than they should be like rotating staff. So nobody knows the person like forcing people to get up at a time that's not there.
rhythm, you know, those kinds of things, make things worse, make your well being senses worse than they than they would be otherwise. So, so yeah, we can say on these, but I think it goes deeper than that. There's a lot, there's a lot going on. And, and really, it's about taking a framework, I use the well being framework. It's not a cookie cutter. Within that, then you have to look at a person, you have to know that person well, and you have to decide, how does this framework fit with them? And how can we
individualize an approach that will look at the well-being domains of seven drinking glasses. How do we refill those glasses for people so that they're full again and not nearly empty as they often are?
Jackson Nguyen (34:47)
And before we touch on this, like well-being aspect and the experiential model of care that you, described, and I want to touch on this concept of the institutional model of care, which you have rationalized how the system is what had led us to using, you know, these medications in the first place. And in your book, you examined how, you know, our current nursing home system, like resembles that of an institution through these like three different characteristics, like physical.
operational and interpersonal. I would love to hear your perspectives of these three characteristics and how do these characteristics contribute to this institutionalized environment.
Allen Power (35:22)
Okay, yeah. You know, hospitals have been around for a long time. Nursing homes, the current model of nursing home has been around for decades now, pretty much for my entire life. But it really came about because we needed to find a way to house people who became more frail, who had more needs that could be met at home, in the community, by family members. And the Medicare and Medicaid Act from 60 years ago helped finance that. But it was all tied into medical outcomes, first of all.
So that medicalized aging and long-term care right from the start because it was not a social program. Social programs were like welfare and that was hard to get through Congress. So they made a medical program. So that means in order to get paid to live in a nursing home, people have to do things to you. have to chart all the medical interventions they do. So all of a sudden your life has become medicalized. And because it came from the hospital model, it follows that it's very nursing based, it's very hierarchical.
It's very much set around physical care. know, there's a nursing station, there are med cards, there are often multi-bedroom rooms. It's not a home, it's more like a hospital. There are crowded common areas. The focus is on care, the other stuff around living, activities, those kinds of things that are just kind of side things that are sprinkled in along the side, but they're not prioritized, and the staffing is not prioritized to encourage those kinds of things.
So a lot of that is the organizational environment. The interpersonal environment, once again, comes from our view of dementia, comes from our view of focusing on tasks instead of people. And when you live with dementia, when your brain processing changes, that is the worst way to focus because we need to really change the way we communicate and interact with people if we want to have successful interactions. so that involves slowing down, it involves communicating differently, it involves kind of
bucking a system that wants you to get things done quickly and efficiently. And then the physical aspect is once again, a set up like a hospital, long haul, these nursing stations, double or even more multi-bedroom rooms, medication carts that are delivering pills, sometimes in a way that is kind of ridiculous, something you commonly see, for instance, that drives me crazy is the med cart parked outside the dining room at lunchtime.
as people are going in to try to eat a good meal, having pills, growth, filling their stomach before they even get their food. Food is mass produced and served on trays. And once again, it's a daunting thing to feed 200 people that live in the building, but moving to more individualized food preparation delivery, decentralizing dining is another thing.
Jackson Nguyen (37:37)
Mm-hmm.
Mm.
Allen Power (37:57)
that can help make the dining experience much more meaningful. it's all about that kind of mass scale, mass production thing. You know, we're all a cog in the system. Another thing that happens, it's very unfortunate, but it happens all over the country, is that when you move into a nursing home, whether you get a bath or a shower, and what day and what time of day, you're often plugged into whatever the person that was in the bed before you got, before they died or moved out.
So if Mrs. Jones passed away and she was getting showers on Tuesday and Friday, then when you move in and take over Mrs. Jones bed, you're assigned showers on Tuesday and Friday at the same time because that fits your cog in the system. Yeah. I mean, these things happen all the time. And once again, we're not bad people, but we just have not figured out how to change systems. And that's where groups like the alternative pioneer network, the greenhouse project have all taught me it can be different. We can live differently. We can have.
Jackson Nguyen (38:33)
Wow.
Allen Power (38:49)
Greenhouse Project talks about small homes with 10 or 12 people living, you know, in all private rooms with private showers in their rooms and communal dining. they can do it for the same or less cost as the equivalent number of nursing home residents, for less, less, for far better outcomes as far as quality of life, quality of care, better outcomes for the people who work there, less turnover. And we proved that with houses that we helped open when I was working.
Jackson Nguyen (38:56)
you
Allen Power (39:15)
here in Rochester. So it can be done, but it's work. It takes a lot of work. And sometimes you have to buck the system. Sometimes you have to buck the government, who also loves to see efficiency and loves to see rules and regulations. And they talk about person-centeredness. But when it comes down to surveys, they often don't put their money where their mouth is.
Jackson Nguyen (39:32)
Yeah. And because of, you know, the like the hustle and bustle of life and how we're all so busy in the work culture that prioritized, you know, efficiency, speed, convenience, budget, like was that ultimately how we got here in the first place?
Allen Power (39:47)
Yeah, here's the big secret. You know, we always say that we've defaulted to institutional care because we value efficiency over individual people and their humanity. But the truth is, nothing efficient about our system. When you are plugging people in with changing brains and rotating staff and trying to get them to do things at times and in ways they can't do it, you are creating trouble. know, you're creating people who are unhappy, which takes up your time.
which forces you to medicate them with dangerous drugs which you then have to monitor and deal with the side effects. It's not a good system. It's not an efficient system. It does take an input of effort and time to change the system. But when you do, the people I know that have worked in transformed systems, every single one says, I would never go back to practicing the way I used to. This is so much better. It was hard work getting here, but I would never go back.
And I remember when we opened our greenhouse homes here in Rochester, and we still had a main campus, and it was a very good campus. We gave very good care there. But the greenhouse homes were 12 miles off campus in the residential community. We're the only ones in the country to embed it in a residential community instead of on a nursing home campus. And occasionally, the people that worked there full time would be called on to float over and do a shift back at the home. And they would come back, and they would say,
I forgot what it was like. It's just so much better now than what it was like before. And that was a good home, but it was still so much different from what they were doing that they could.
Jackson Nguyen (41:13)
in terms of like accessibility of these nursing homes, of course, like not everyone can, you know, like have the money to afford these, whether it's greenhouse nursing homes, like you mentioned, or the just general nursing homes. And so in order to, you know, transform our culture of care, not just at the community level, but like internationally, like how do
How can we actually do this, you know, so that everyone can afford this?
Allen Power (41:36)
It's interesting you mention that because just today, of the daily fees I get is from McKnight's, which is a long-term care newsletter. And there's an article right this morning in the McKnight's talking about the small house model. How even though the outcomes are better, there still is not a of take. And how a lot of states are still not incentivizing homes to do this.
When we did it in New York, New York State encouraged us to do it and they actually gave us an innovation grant that meant that we needed to raise less of the capital ourselves in order to get a bond to build them. So was a big financial incentive to do it. And other states will kick in incentives to people to build these. I know they talked about in Arkansas where it
They only get $5 per person per day increased pay rate, increased bed rate. But it's enough that Arkansas has got tons of greenhouse homes. Some are increasing at even 20 % or more, or $20 or more per day. So there are incentives that if their legislators wanted to get involved and see more of this, they could start budgeting for this. The bigger question though is just how do we see aging? Where people, older people are still...
are still pretty much disposable at this point. I think nursing homes as they are and the system, the operators aren't to blame. There's no individual to blame. What's to blame is society's ageist views. If we cared more about older people, we never would have designed these kinds of homes to care for them. We never would have designed these kinds of systems because none of us would tolerate this for ourselves. And so ageism is a real big, big problem.
The other problem is that care outside the home has always fallen on a couple of things. First of all, it's fallen on family members to provide it. There's not a lot of community support for aging. You can certainly get private aid service at home, but you almost always pay for it yourself. So that locks out a good percentage of the population. And they have 24-hour care costs as much or more than living in a nursing home. It's not cheap.
And the other thing is that this idea of, you know, that we have to be independent. You have to do all for yourself. And if you're having any trouble at all, you can't stay home. You got to move to some campus, assisted living or retirement or nursing home or whatever. The community is just not set up to support this burgeoning population of older adults. But the truth is that we can't just keep building nursing homes because there'll be no one to staff them. In 1950, globally, there were 12 working adults for every retired adult, roughly.
that dropped to nine to one in 2000. And in 2050, when us baby boomers are really getting up there, there are gonna be four working adults forever retarded adults. So who's gonna staff all these nursing homes? Nobody. So the truth is people have got to be able to age in community longer. There'll always be congregate living environments, but we can't have more than we have now because we don't have anyone to work there. We have got to rethink what it means to age in a community.
Jackson Nguyen (44:15)
Mm-hmm.
Allen Power (44:30)
That means creating more age inclusive and dementia inclusive communities. It means coming up with better ways to provide support that is outside of blood ties because people move away or just are not available to provide all that support. It also means engaging older people in ways that don't just make them helpless recipients of services, engaging more older people in volunteerism and mentoring and being part of the community instead of just sitting alone at home waiting for someone to
come and give them a service because we have a lot of skills out there that are being marginalized by our age of society and we're cutting people off. And my friend Dr. Amy Keota, who's an environmental gerontologist, has done brilliant international work with re-engaging elders and communities to help them to recover from natural disasters, to help them to help address other community issues and create a stronger, more resilient.
elder center community in different parts of the world. And, and so this is the mindset we need to make. And, of course, there's no conversations like this happening in this country, not much at all. A few people like Bob Kramer, you'll see on LinkedIn is really thinking about these things, talking about it. Bill Thomas, co-founder of Eden Alternative with his wife, Jude, talks about this too, but there are not a lot of people engaging this discussion. And this is the bigger
question is what comes after the nursing home solution because it's not a solution and it's going to be less of a solution every year as my generation gets older and older. Right now there's 10,000 American boomers turning 65 every single day and there will be right through 2029. There have been for several years and there will be for five more years, four more years. So yeah, it's a real issue that we have addressed.
Jackson Nguyen (45:54)
Mm-hmm.
Mm-hmm.
Thank you so much, Dr. Power, for your insights on that. And next, I want to shift to this idea of the experiential model of care we discussed. so what is ultimately this model, and why is this model so powerful?
Allen Power (46:26)
As I mentioned, when I started writing my book, which was back in early 2007, I started writing the book. It took me three years. I knew I didn't like antipsychotics. There was a lot of conflict that arose as a result of the fact that I didn't want to use drugs when other people would call me and expect me to prescribe something. And I would just say, let's have a meeting. Let's try to figure out what those unmet needs are, what other interventions. I was still in that mindset back then.
But I realized that number one, I didn't have enough arguments about why the drugs are bad because I hadn't done the work I did for the book. And I also did not have a coherent alternative approach. And that's where the book came from. It started out as a paper. I wrote a paper about how we could use what I learned from the transformation culture change movements to change our view and approach of dementia and unmedicate people with antipsychotics.
And it was an opinion piece, basically. I'm not a researcher in that sense. And I sent it to JAGS, the big geriatric journal, because I thought, why not? This is an important concept. And so I'll send it to the biggest journal. And they liked it. The reviewers and the editor liked it. But it wasn't evidence-based. I hadn't done any research. And it was very long. And so they ultimately said, can't publish it. And I went back to a mentor at the university, Dr. William Hall, who's
been very big in the field of geriatrics and who was the one who actually encouraged me to first move from private practice to nursing home when I thought, this crazy? Do I want to do this? I'm kind of burned out. I want to try something different. And he's the one that encouraged me to try it and kind of set me off on that path. So he set me off on another path back in 2007 when he said that it's hard to get papers like this published nowadays in medical journals. Why don't you write a book? And so, so I, I began once again, I challenged myself about the studies, read all the studies.
But I also said, you know, as a doctor, I've got the same biases as everybody else. I'm seeing dementia through the lens of a clinician, through a medical lens, and I need to see the whole person. And I've been taught to see the whole person through some of my culture change training, but I haven't gone far enough to really figure out dementia. And so the first thing I did in writing was to redefine dementia.
in a way that would not have all the medical baggage and all the baggage of decline and disability and death, you know attached to it and So I said, okay How can I take every person with dementia no matter what type they have what level of ability they have how can I say what's going in a very non-judgmental way and So I wrote down a very simple kind of fuzzy sentence. I wrote down
dementia is a shift in the way people experience the world around them. And it sounds kind of flaky, but that was my starting point. And I will tell you that over 20 years, I have evolved and changed my thinking on a lot of topics. The one thing I have not changed is that definition, because that set me off on, like you say, what I call an experiential model as opposed to a biomedical model of dementia. It doesn't,
deny that there is disease or injury in the brain, but it says, this is the way I want to look at it as how is this individual experiencing that disease or injury to the brain? What does it mean to them? And you mentioned empathy before. I think the hardest thing in my teaching, people always ask what's the hardest thing. It is getting people to really, truly put themselves in other people's shoes.
and say, how would I feel? And people can do it for a moment. But what that medicalization of dementia has done is that, you know, to use a term that researchers have used, it causes othering of people. It makes us see them as some diseased other. And so even though we can understand that they may feel that way, we don't apply it to ourselves because we say, yeah, but they're different, you know, and they're not different.
You know, like I said, I locked the door to your house right now and you couldn't leave. You would have a behavior. Okay, you're not different. It's just something's happened a little bit faster for them or in a different way. They fall into this category. So it opened up a lot of things. And the other thing about empathy that fits into the experiential model is that I became more open to understanding the experiences of people who are talking about dementia. And that was the time in the mid 2000s.
when some people living with dementia were writing books and speaking internationally about what it was like to live with dementia. And I met a couple of them early on and the most powerful influence on my life in this work was the late Dr. Richard Taylor who developed Alzheimer's around 1999 or so. was just about 60 years old. He was psychology professor.
After going through a period of grief and withdrawal and isolation, he began to start blogging about his experience. And back around 2006, 2007, when I was starting my book, I became aware of this and kind of met him online and then met him in person at Alzheimer's Disease International in Singapore in 2009. And that became a six year friendship collaboration. We traveled together, spoke together, made videos together. He wrote the foreword for my...
for my second book and eventually died, ironically not of dementia, but died of cancer. Speaking, we spoke together just two months before his cancer came back and he passed away in 2015. But he and other people like Christine Brighton from Australia, later people like Kate Swaffer from Australia, other people from the US and Canada, Europe.
and down under have all influenced me and taught me a lot about the experience and kind of reinforced what I was doing, led me farther down that path. And also sadly revealed to me that I was taking care of people for years that were teaching me things, but I maybe hadn't been paying enough attention because they may have had severe dementia. Everything, even the person with the most severe dementia is doing is teaching us something about their experience.
So it opened up a whole idea. Richard Taylor said something back there in Singapore that got me on that whole disability model. He said to the audience, I'm not dying of a fatal disease. I'm living with a chronic disability. And that shifted my brain from dying to living from fatal disease to chronic disability. And that's where the whole wheelchair thing came from. That's where we started going down a different road. And if we can't cure dementia, which we can, what are those universal needs? And that led me into the whole well-being approach.
And the other kind of cool thing for long-term care about that definition is it turns a hierarchy upside down. The brain is the most complex thing known to humankind. Some people think there's a hundred trillion nerve connections, you more than stars in the known universe. And there's over a hundred different causes of dementia and all these things, structurally and chemically going on with people. And when you try to deal with such a complex array of difficulties,
who are the most knowledgeable, who are the experts? Well, the most knowledgeable people are the specialist physicians. So neurologists and psychiatrists or the brain researchers, they're the ones you kind of default to because none of us can understand that the way they do. And so what happens in long-term care is that that hierarchy persists. And so if somebody doesn't want to take a shower or is resisting taking a shower one day, and that keeps happening and the team can't come up with an answer,
What do they do? They pick up the phone and they call the doctor because they're the experts. And I can tell you, having gone to medical school, we never learned how to give anybody a shower, but we did learn how to prescribe pills. So picks up the phone and calls the doctor saying someone is being difficult. They won't take a shower. They're going to get a pill, probably an antipsychotic or something equally ineffective and dangerous. When you define dementia instead as a shift in the way the person, how the person experiences the world. Now, who are the experts? Well, the biggest experts is the person.
Jackson Nguyen (54:02)
.
Allen Power (54:19)
The and the secondary experts are the people closest who know that person best. So maybe a family member, maybe the care staff in the nursing home who are closest, the nursing assistants, the nurses, the people that spend time. It could be a housekeeper that's in cleaning that room every day, but it's not the doctors. Doctors have an important role. They're still there to diagnose and treat illness. But if somebody doesn't want to take a shower, you go to the experts. You start with the person. If the person can't tell you, then you go to the team.
Jackson Nguyen (54:36)
Mm-hmm.
Allen Power (54:47)
And maybe the team called the doctor because they didn't have an answer, but they didn't know how to think differently. So when I go and consult and educate people in nursing homes, I don't wave a magic wand and solve their problems because I don't know the people, but I tell them how to think differently. And when they do, they solve the problem because they know the person and they've been taught how to leverage their knowledge as experts and dialogue with each other and come up with collaborative solutions. And so it just flips that hierarchy of expertise upside down.
And I think that's kind of a magical thing that I didn't know was happening until much later when I came up with it. So that's kind of the road I went down. And it led me obviously to all these challenges just by that simple definition. The only thing I did was I think I said him, her. So I made the definition non-binary to stay with times. But otherwise, I have not changed that in almost 20 years.
Jackson Nguyen (55:39)
That's incredibly powerful, Dr. Power. So what are some of the obstacles that we are experiencing as a society that may impede our ability to fully integrate this model as the standard model of dementia care?
Allen Power (55:51)
Yeah.
Biggest obstacles. Number one, Asianism is still there. Ableism is still there. And with dementia, you often get a little bit of each. So there's that societal undercurrent. There's the over medicalization of dementia. There's this characterization of people's actions and words as behavioral psychological symptoms of dementia. This is the default language of medicine, of researchers, of specialists, of the media. And I believe that it's incorrect and needs to go.
Jackson Nguyen (55:59)
Mm-hmm.
Allen Power (56:19)
I believe that dementia is real and it does affect how you might react or respond in the situation, but it is not caused by the brain disease. There's a root cause that's deeper and the root cause is often within those areas of well-being. And we can talk about that case conference approach in a moment because I think that will really illustrate it. So that's a big problem. And then once again, the rigid systems of care that are in place that are hard to change and those systems of care, unfortunately, are also supported by our regulatory environment.
And you know, it's easy for the media and for the regulators to point their fingers at nursing home operators and say, you need to change. But if they don't change the way they survey, if the media doesn't change the way they report on nursing homes, or the way society views nursing homes, if the reimbursement schemes don't change the way they reimburse nursing homes, we reimburse illness, not wellness. If you find a solution for somebody with dementia and they become more capable,
they get off a drug, more capable, they're less confused, you'll get a cut in pay because they don't have as high a functional score as they had before. So you're rewarded with a cut in pay for making somebody healthier. You you get paid a lot more for treating a bed sore, which is a horrible thing, than for preventing a bed sore. We have this whole broken system that is not based on making people.
And so there's so many things need to change. The legal system needs to change because the things that people sue for actually infringe on resident rights, infringe on better care practices. It's a society wide change and it takes a coordination led by somebody. And so far it's only been, you know, providers in the industry and a few individual voices like me or like Bill Thomas or others going around talking about this without a lot of movement.
from the other sectors. And that's why it's very important because we're getting the media involved. And that's an important part too, because we need to get the public involved. We need more public advocacy to change things. Until we just think this is the way it is, or it's not going to happen to me, nothing's going to happen.
Jackson Nguyen (58:05)
Yeah.
Yeah, thank you, Dr. Power. And as we start to wrap up, a lot of what we discussed today can sound a bit grim and upsetting, especially in this challenging time that we are experiencing. How could we find hope to ultimately transform this culture of care for our elders with dementia?
Allen Power (58:39)
It's easy to lose hope because the biomedical paradigms that kind of stifle this are so strong and the pharmaceutical industry is so strong around this. For years we did not approve a drug, an antipsychotic for dementia. We finally did. was shortly around the same time they were approving what was really not a very good drug for removing amyloid. The FDA frankly was weak about approving Alzheimer's drugs at that time.
And the people that make that drug knew that they could get something passed when all the ones 10 years ago couldn't get something passed. It's no safer or more effective than the old ones that had it. It has the same black box warning. So all these things kind of make you feel like, you know, nothing's ever going to change. As far as my work, where I get my satisfaction is with all the individual stories, all the individual interactions.
you know, the people who are able to say, you know what, my life has changed or this person's life has changed because we did this different approach. And just to hope that we slowly move the needle that way. And that can be seen as radical by some people. I'm not really a radical personality, but I'm happy to be on the fringe if that helps pull the center a little bit in the direction it needs to go. But just quickly to sort of show what I do when people, what I do for a care conference.
So looking at the dementia is I look at the well-being and I look at those seven drinking glasses. And I ask people, okay, where this person is right now, how full is each of these glasses for this person? This guy who's doing whatever he's doing. How much of a sense of autonomy does he have? How much meaning in his daily life? How much security? And I've taught this approach on five continents and well over 15 or more countries with really smart people that bring real life challenging situations.
Jackson Nguyen (59:57)
⁓ huh.
Allen Power (1:00:19)
Every time I do this, I have them line up those seven glasses and give me a consensus as to how full those glasses are. And it's rare to find more than one glass is 30 % full or higher, and most of them are nearly empty. And I can say right there, you've done everything that the medical system has taught you to help this person. Here are seven critical areas of human need that we are doing nothing for. Why are you surprised that these people are getting better?
And then I tell them, don't try to fix the behavior. Just fill the glasses 24 seven, good days and bad days. If that person needs autonomy, what are all the ways you can give them more choice and control through every interaction, every engagement and pick one glass, work on filling it. Then when you have time down the road, pick another one. Don't try stopping the pill until you've established wellbeing because, because even though they're being sedated, if you take the pill away and they get upset, if you haven't done anything, you're just going to start the pill again. So work on the well.
Because the pills are really just a symptom of a system that can't provide well-being for people. And what I see is magical stuff. I see people that nothing helped for. I see people that were on drugs that thought they had to be on drugs. People that had things you say, there's no way that person can't be without an antipsychotic. And they stop it and they're happy. I have a friend who's been using my approach in the state of Arkansas as a consultant. She's a doctor of nursing practice and consults with homes. She's been working for the past several years with 92 long-term care homes in Arkansas.
All different kinds, all across the state. That's 44%, almost half the homes in Arkansas. And they are currently averaging, as of our last conversation, 4.5 % antipsychotic use, whereas the national average is up around 20. And they had no increase during the pandemic. And during the first year, they started that they decreased, the cohort decreased their transfers out to acute neuropsych use by 75%.
Jackson Nguyen (1:01:53)
Wow.
Allen Power (1:02:07)
So I know it works. I'm working with the Research Institute in Canada. I'm trying to put more evidence behind it because people need to see numbers, you know? So we're working on that. I just worked with a home in Canada where over the course of a year in this one 32 person secure dementia unit, you know, they tried drug reductions on 19 people during the course of the study.
Jackson Nguyen (1:02:09)
Mm-hmm.
Allen Power (1:02:32)
17 out of 19 reduced or stopped their medications. 61 % stopped them completely just in the course of that. And they'd been hovering at 40 to 50 % being medicated for several years before we came in and did the training. So we know it's there, but it requires a system change to sustain it. It requires local champions, not just me coming in and giving a lecture. And I'm now working with a group in Hamilton, Ontario.
Jackson Nguyen (1:02:54)
Mm-hmm.
Allen Power (1:02:57)
that is really committed. They're called the Thrive Group and they have a couple of long term care homes as well as community services and one of their homes, St. Peter's Residence. They've decided to start a an initiative where they're going to do a wholesale transformation. So they got a two day training. The first day is skills like relational skills, emotional skills, coaching skills, critical thinking, all these kinds of things. And they're giving it to everybody. And the second day of training is me doing leading a
a group in using sort of my approach to dementia. And they're going to give this, they're giving small groups about 10 people at a time. We've done two of them already. We're starting another two day one tomorrow. And they're going to give these to every single employee in the home over the course of the next three or four months. And in addition to that, they're going to do transformation. They're going to transform operations. They're going to look at the physical environment to make any needed changes. And
they're doing the wholesale change that needs to happen. And I think they can do it. I believe they have the leadership and the people that can do it. I think they can put themselves on the map and I want to be part of that. that's the latest excitement I have right now. It's the reason I haven't retired yet because something always comes along that says, yeah, I want to do that. I don't just go back and play music. I want to work at this a little bit longer. So I find myself going up to Canada a lot these days.
Jackson Nguyen (1:04:13)
Yeah.
Yeah, incredible Dr. Power. And if listeners could remember just one takeaway from our amazing conversation today, what would you want it to be?
Allen Power (1:04:25)
wow, one takeaway. I would say to think of a person with dementia is a fully formed normal person who's living with a disability. One of the best compliments I got and I wasn't even sure at first, I was teaching in Denmark in a two day seminar that I do for Eden Alternative.
Of course, the Danish speak English better than a lot of Americans do. But but I wanted to make sure that everything was translating. And so as they were, you know, I let them do their conversations in Danish, but of course, I don't speak Danish. So I had to get my my didactic parts in English. So beginning of second day, I was checking in with people. And I said, Is everything working for you? you have any comments and reflections? And a nurse who was probably, you know, about 50 years old, who've been a nurse for many years raised her hand, she said,
Jackson Nguyen (1:04:50)
Mm-hmm.
Allen Power (1:05:10)
This is the first time in my career I've seen people with dementia as normal people. And I thought, that's kind of cool. That's kind of cool. And so instead of saying people are fading away or those graphics of the tree with the leaves going like your brain is disappearing or people are disappearing, the person is there. We may have lost the ability to truly connect. They may have lost the ability to fulfill the roles in family and society they did before. there's nothing wrong with grieving those changes.
for both the person and their family members. But the person is still a person always. And one time, not long before Richard Taylor died, I asked him what his main message was at that time. I'll finish with that. He said, I'm trying to get people to see the humanness in people with dementia. And then he says something that was really striking that I use a lot nowadays that kind of goes against the ageist stereotype. said,
I believe that as people progress with dementia, their humanity increases. I think his point was that we fill lots of roles, societal roles, and we have pretenses. If I've got a headache now, I can be putting it out of my mind because I'm talking on a podcast or whatever. People with dementia can't do that so much, but who they really are sometimes gets, as he said, revealed. person is never less human, and in many ways they're more human because they are more revealing.
of their inner selves. And he said, we need to be ready to accept, ready for that humanity to manifest itself and to accept that and to always, always celebrate and support the humanity of people, regardless of their abilities. So I guess that, you know, Richard was my greatest teacher. I got to finish with Richard.
Jackson Nguyen (1:06:44)
Yeah. Anyways, thank you so much, Dr. Power. It's been truly an honor and pleasure to be with you today. Thank you so much for sharing all your insights, your experience and your empathy with us. In today's episode, I personally have learned so much and you have truly transformed my way of thinking to dementia care. And so I appreciate you very, very much. Until next time, take care, everyone.
Allen Power (1:07:04)
Well, I appreciate it. Thanks.