Caring Conversations EP 15 – Beyond the Diagnosis: Dementia Care That Works at Home

Episode Summary

Most dementia care advice focuses on managing symptoms and behaviours. Dr. Al Power, a geriatrician and one of the most influential voices in person-centred dementia care, argues for a different starting point: well-being. Rather than asking how to stop a behaviour, he asks what unmet need that behaviour is expressing.

Melissa Therrien, RN, brings the front-line view from inside thousands of Alberta and BC homes, where Ohana Care’s caregivers support people living with dementia every day. Together they translate Dr. Power’s experiential model out of the long-term care setting where it is usually discussed and into the reality of a private home, where the caregiver is often a spouse or adult child, the environment cannot be redesigned, and support is stretched thin. The result is a practical, hopeful conversation about meeting a person living with dementia where they are.

Key Themes

• • The goal of dementia care is well-being, not just the management of symptoms.
• • Distress and difficult behaviour are usually communication of an unmet need, not problems to be eliminated.
• • Medication, especially antipsychotics, is too often the first response when the real cause goes unexamined.
• • The experiential model can be applied at home, not only in care communities, with small changes to environment, routine, and connection.
• • Family caregivers carry an enormous emotional load, and bringing trained support into the home relieves pressure and models a calmer approach.
  • A dementia diagnosis is not the end of a meaningful life. Joy, connection, and growth remain possible.
  • Supporting identity, autonomy, and meaning matters as much as safety and physical care.

Guest Bio

Dr. Al Power (G. Allen Power) is an internist, geriatrician, educator, and author internationally recognized for his work challenging the overuse of antipsychotic medications in dementia care. He holds the Schlegel Chair in Aging and Dementia Innovation at the Research Institute for Aging in Waterloo, Ontario, and is a Clinical Associate Professor of Medicine at the University of Rochester. He is the author of Dementia Beyond Drugs: Changing the Culture of Care, named a Book of the Year by the American Journal of Nursing, and Dementia Beyond Disease: Enhancing Well-Being. A trained musician and songwriter, he speaks around the world on transforming the culture of care for people living with dementia.

Featured Resources

• • Dementia Beyond Drugs: Changing the Culture of Care, by Dr. Al Power
• • Dementia Beyond Disease: Enhancing Well-Being, by Dr. Al Power
• • ChangingAging (changingaging.org), Dr. Power’s writing and platform
• • Research Institute for Aging (the-ria.ca)
• • Alzheimer Society of Calgary (alzheimercalgary.ca), local education and support.

Transcript

Melissa (00:05)
Hello all and welcome to Caring Conversations. This is the Ohana Care podcast that talks about aging, caregiving, and what it really looks like to support someone being well at home. I’m Melissa, the general manager and a registered nurse with Ohana Care. Today’s episode we’re talking about dementia care beyond the diagnosis. not just what needs to be managed, but what it actually means to have someone feel safe, respected.

Connected and still very much themselves in the home. I am very excited to be joined by our guest today, Dr. Allen Power, a geriatrician author and one of the leading voices in person-centered dementia care. So whether you’re caring for someone living with dementia, supporting a parent or partner, or simply wanting to just learn more about what compassionate dementia care looks like in the home.

I’m really happy you’re here and joining us today. So first off, welcome, Dr. Allen Power. Thank you so much for joining us today.

Dr. Allen Power (01:06)
Thank you, Melissa. It’s a pleasure to be with you today.

Melissa (01:09)
I have to say I am so excited. I think ninety-nine point nine percent of my conversations are about this topic specifically. so I’m really excited to chat with you today and get some insight from you in supporting everyone out there that, you know, unfortunately more and more we’re contending with this disease and these sorts of challenges that are faced to e to families going through this journey. So

Very excited. And I said earlier before we started filming, we could probably talk for hours about this. So yeah.

Dr. Allen Power (01:41)
Yeah, easily.

Melissa (01:43)
okay. Do you wanna do a quick introduction and just share kind of your background?

Dr. Allen Power (01:48)
yes, I I’m I’m Dr. Allen Power. I’m a geriatrician by training. I live in Rochester, New York, so just south of what I am still calling Lake Ontario. And I work part time at the Schlegel U Waterloo Research Institute for Aging in Waterloo, Ontario as well. So I’m

Melissa (02:06)
Mm.

Dr. Allen Power (02:07)
familiar a lot. I’m working a lot with organizations

I’ve worked across many provinces, including in Calgary and Edmonton before, and so very excited to be here. I I am doing this work based on my own work as a full time geriatrician in long term care homes and finding that I did not like the way antipsychotic drugs were overused. And when I couldn’t explain well enough why I didn’t like them or what we could do differently, I sat down and worked out a different way of approaching people.

and wrote a book based on that and and another book and those have sort of spun into a a career of speaking and consulting and doing educational seminars. So that’s what I do these days.

Melissa (02:49)
Well, that’s very exciting and I’m sure you are well received and widely demanded. So I’m very thankful that you took some time out of your busy schedule to join us today.

Dr. Allen Power (03:00)
Well it’s great to be here. I was in Calgary, gee, when was it? About a year ago and had a wonderful time with the Alzheimer’s Society and the folks there.

Melissa (03:04)
Good. Wonderful.

I hope it was not too cold for you while you were here. Mind you, New York gets cold, so

Dr. Allen Power (03:11)
No, no, no.

No it w it was not it was not that time of year.

Melissa (03:15)
that’s good.

That’s good. Well, let’s dive right in. you know, and let’s start talking about like rethinking what dementia care looks like. so, you know, when we talk about dementia care, usually we’re talking to people who have just received a diagnosis or are reaching a point of seeing what that diagnosis actually is looking like coming to fruition.

so what’s the biggest mind shift mindset shift that you would ask them to make after getting this diagnosis?

Dr. Allen Power (03:43)
Let me mention two mindshifts and one sort of came from the other. But one of my the person I consider probably my greatest teacher about dementia was the late Dr. Richard Taylor. He was a psychologist who himself was diagnosed with Alzheimer’s disease in nineteen ninety nine. He lived with it for fifteen years before eventually dying due to cancer in twenty fifteen.

Melissa (04:04)
Mm.

Dr. Allen Power (04:04)
But he spent those fifteen years writing, traveling the world, speaking.

about his experiences and we got to be good friends and traveled and did a lot of work together. And the first time I heard him speak, which was back in two thousand nine when I was working on my book, he he said something that really shifted my paradigm. He said, I am not dying of a fatal disease. I am living with a chronic disability. So he changed the focus from dying to living and from fatal disease to chronic disability. And of course

There is disease present in the brain when people live with a diagnosis related to dementia. But if you think about it, every person who has a disability has that due to an illness or an injury or a condition of birth. And so you can look at dementia as a disease, but you can also look at it as creating cognitive disability, the inability to do what you could do before without some support. And so that really challenges us to focus on

what accommodations people need who live with dementia. for instance, if there’s a great parallel with a person in a wheelchair needing a ramp. You know, what are the ramps we need to build for people with dementia? And those are not physical wheelchair ramps, but thinking ramps, ramps that help us to understand and engage successfully with the world around us. So that was a big mind shift for me. The other big one was where I started in writing my first book nearly twenty years ago.

And that was redefining dementia for myself, to get out of the narrow medical box and only see disease and deficits, and to look at the person and to try to understand what it was from their standpoint. And so I wrote a definition, just kind of a fuzzy definition to get me started many, many years ago. And I redefined dementia as a shift in the way people experience the world around them. And that challenges us to

try our best to understand the person, to look through their eyes and to see exactly what they’re feeling, what they’re experiencing, to give us clues as to how better to support them. So I think those two things have been kind of my mantra through the years as I’ve evolved my approach, and they have remained fairly steady

Melissa (06:19)
Mm-hmm.

Dr. Allen Power (06:19)
right through this.

Melissa (06:20)
Yeah, I I I love the idea of thinking about it as a chronic disability. And one of the key words that you mentioned was challenge, right? I think we need to challenge people to meet them where they are, but also see what else they’re capable of, which we do really well with people with disabilities. You know, we say, like, this is the world around you, and how can we support you to still be successful in living within it, right? What accommodations, as you said.

when we say someone has like a terminal disease, we ch kinda change that thought process to you know, look at it from a a a sympathetic perspective, and stop challenging them, you know, just make life easy or take things away from them that may be challenging, right? so I

Dr. Allen Power (07:03)
Yeah, that’s

beautifully stated, I think. And and many people I know, advocates who are living with dementia and teaching about it, unfortunately have had unpleasant experiences with doctors who basically told them, You’re dying, get your affairs in order, even with early symptoms

Melissa (07:15)
Yeah. Yeah.

Dr. Allen Power (07:17)
and cause them to feel like they need to drop out.

Melissa (07:19)
Yeah.

Dr. Allen Power (07:20)
And and then they realize that that’s not the case. And

Melissa (07:23)
Yeah.

Dr. Allen Power (07:23)
even though there is damage to the brain, the brain has resilience and reserve.

Melissa (07:27)
Mm.

Dr. Allen Power (07:27)
And

there are things that w people can call on to continue to live as successfully as possible.

Melissa (07:33)
Yeah. And I think a lot of people also make the parallel between a toddler and someone with dementia. though I do appreciate that there are some similarities and parents can appreciate that. But then the other aspect is we challenge our toddlers every day to grow and continue to do

Dr. Allen Power (07:48)
Yeah.

Melissa (07:49)
different things. And yet when we’re talking to someone with dementia, we really dumb it down, let’s say, and no longer face them with those challenges. So

I I love what you’re saying that, you know, we can there is some pliability. There is still opportunity for people to live and thrive, with this diagnosis. So

Dr. Allen Power (08:10)
Absolutely. And and there there certainly are parallels, although I always try to encourage people to not infantilize a person with

Melissa (08:17)
Yes.

Dr. Allen Power (08:18)
dementia. They are still a f fully grown adult living with a cognitive disability, fully developed,

Melissa (08:22)
Yes.

Dr. Allen Power (08:23)
and they don’t go back to childhood. I don’t like to I I don’t like to use phrases like parenting your parents. They’re always your parents. They may

Melissa (08:29)
Yeah.

Dr. Allen Power (08:29)
not have the same ability to fulfill the same social functions.

or parental functions, but they are still an adult, they’re still your parent. And and I think sometimes we start to treat people with dementia like children, as you say. And sometimes even less than not not giving

Melissa (08:44)
Mm.

Dr. Allen Power (08:44)
people a chance to take chances and make risks. And and

Melissa (08:47)
Yeah.

Dr. Allen Power (08:48)
yeah, we can certainly dive into that a lot more. particularly if you later want to get into

Melissa (08:50)
For sure.

Dr. Allen Power (08:52)
the the upcoming book. That’s a that’s a whole nother topic, but we’ll get to that.

Melissa (08:56)
I’m excited.

Dr. Allen Power (08:58)
Ha ha ha

Melissa (08:59)
Okay, so many times when we are talking about dementia, we do actually talk about behaviors. That’s where we see, you know, many of the things come and become really physically present. and that’s what people notice externally, right? but you talk about behaviors more as an expression versus a a challenge. Can you dive a little deeper into that for me?

Dr. Allen Power (09:23)
Yeah, I think that with any conversation, and it doesn’t matter whether we’re talking about people with an illness or people with other disabilities or people from a certain background, we have to be careful about the words we use to describe people because

Melissa (09:36)
Mm.

Dr. Allen Power (09:36)
they can not only reflect a negative mindset, but they can also affect our mindset.

Melissa (09:41)
Mm.

Dr. Allen Power (09:42)
And I think if we see people with dementia as being difficult, being problematic, needing to be managed.

That’s a certain view that whatever is happening is the fault of that person, or as most people say, the fault of their disease. And that leads us down a road of trying to control people, not discounting their words and actions as being pathological, and relying on potentially dangerous pills to try to correct these things. And so I I know the group I work with at Schlego Villages in Ontario abandoned any kind of reference to behaviors.

And they

Melissa (10:15)
Mm.

Dr. Allen Power (10:16)
use the the term personal expressions, which is one that I like. There are other ways you can say it too, but the idea is just to think about our language. And I’m expressing myself in the best way I can and rather than just d discounting this as dementia, try to understand what I’m expressing and

Melissa (10:33)
Mm.

Dr. Allen Power (10:34)
and try to dig deeper rather than just saying, you know, it’s your disease talking. And in that in that line, one of the things that I do

a lot is reject a very common label that is used in medicine, in research, in the media, in journals, and that is this label label that what people are showing are quote behavioral and psychological symptoms of dementia, or they use the acronym BPSD. sometimes in the in the US we say neuropsychiatric symptoms.

Melissa (11:03)
Mm.

Dr. Allen Power (11:03)
and I reject that because when you say something is a symptom, you’re saying it’s caused by the brain disease.

And I find that that is almost never the case directly.

Melissa (11:11)
Mm.

Dr. Allen Power (11:12)
The person may respond differently than you and I do, but there’s a root cause is deeper. And if we write this off as brain disease, then we do things that are unhelpful or even dangerous and we don’t see the opportunity to actually help the person and actually eliminate that distress.

Melissa (11:29)
Mm-hmm. Yeah, and I think you’re saying to someone when you are labeling it as a challenge, a behavior, or a symptom, you’re taking away their opportunity to communicate in a way that they are still able to do, right? we’re discounting the presentation of something without actually acknowledging what that what that is related to. So I love the idea that we’re

digging deeper and recognizing and acknowledging, you know, what that may be. another word that I I I cannot stand that’s used so many times in dementia care is aggression. And you know, someone is being very aggressive. And then they talk about restraints and ma you know, we’ll get into medication for sure, but certainly aggression.

Dr. Allen Power (12:12)
Yeah.

Melissa (12:13)
Like I just can’t stand that. Like any one of us may react. If you told me I have to sit and stare at a wall all day

I’m gonna react aggressively as well without that I know of contending with a disease process, right? or

Dr. Allen Power (12:26)
Yeah.

Melissa (12:26)
an inability to communicate like we are currently. so that just drives me off the wall. I can’t stand that. That label is so harsh and carries so much stigma and is so punitive. It really hurts people and how other people interact with them as a result.

and many times carries with them for a long period of time.

Dr. Allen Power (12:47)
Yeah, I I I would agree with you on that. although I will say, you know, we’re we’re all good people and I think this language discussion is so important because we need to look at ourselves, look at the words we use and say, do these words help us understand the person or do they keep us from understanding the person? And

Melissa (12:58)
Mm. Right. Yeah.

Dr. Allen Power (13:03)
we’ve all been through this evolution, you know, when I wrote my first book, Dementia Beyond Drugs, it came out in twenty ten and and six years later, in twenty sixteen, my publisher came to me and said we think it’s time for a second edition.

So we’d like you to go through the book and update or change anything that you’d like to change. And I went through and the thing I changed more than anything else was actually my own language. And

Melissa (13:27)
Mm.

Dr. Allen Power (13:27)
and six years later I was kind of shocked to see some of the words I used. And I think I may have even used the word aggression at some point back then. And

Melissa (13:33)
Yeah.

Dr. Allen Power (13:34)
and so we were all kind of on this learning curve, you know, and we’re all

Melissa (13:36)
solo de eso

Dr. Allen Power (13:37)
trying to find better ways to think, better ways to say it. And my my friend and current co author, Jennifer Carson says that

there should be a five year forgiveness rule. We can forgive ourselves for anything that we said five years ago. Because we do we do

Melissa (13:51)
Mm.

Dr. Allen Power (13:52)
learn and and grow as we go. But you make

Melissa (13:54)
Yeah.

Dr. Allen Power (13:55)
you make that excellent point that that when you see things that way, you discount the person’s attempt to try to tell you what’s going on. And

Melissa (14:03)
Mm.

Dr. Allen Power (14:03)
I would even take that one step farther and say not only when we don’t see it that way, but when we respond with the sedating medication, we are we are

Melissa (14:12)
Mm.

Dr. Allen Power (14:13)
even further

silencing the person’s attempt to let us know what’s going on. And that really can be counterproductive as well as harmful.

Melissa (14:21)
Yeah. so where does the standard approach to dementia to care most often go wrong, do you think?

Dr. Allen Power (14:27)
I think it comes from a lot of the things that are stigmas about dementia. the ideas that people with dementia can’t learn things, that they can’t grow, that they can’t make decisions, that they become

Melissa (14:38)
Mm.

Dr. Allen Power (14:38)
like children again and we have to parent them. A lot of it comes from that and unfortunately a lot of it comes from a lot of our formal education, which teaches

Melissa (14:46)
Mm.

Dr. Allen Power (14:47)
about incapabilities but doesn’t teach about capabilities. And all of our screening systems are what can’t you do?

And all of our, you know, behavioral scales to use that term are about what is the person doing this negative. They don’t look at any positive attributes. We don’t

Melissa (15:03)
Mm.

Dr. Allen Power (15:03)
measure people’s character. We don’t measure whether a person with advanced cognitive change can sit down at the piano and play a melody by ear, which many people can do. So we’re

Melissa (15:13)
Mm.

Dr. Allen Power (15:13)
so we’re only seeing part of a person. We’re looking at it through a very narrow lens. And I think unfortunately, family care partners

are often given that information too. And so they don’t have the ability to appreciate the whole person the way we need to do to really help. So I think

Melissa (15:30)
Mm.

Dr. Allen Power (15:30)
I think those are the toughest. And and we’ll get into well-being as well, but I think the the fault of the whole dementia education community and care community is that we haven’t really used the concept of well-being as a fundamental building block of how we support people. And I’m sure we’ll be talking a lot about that because that’s

That’s the centerpiece of everything I do these days.

Melissa (15:51)
Yeah. that’s a perfect segue ’cause I would love to chat about your seven domains of well being in the home. so walk me through the idea of well being as a goal of care.

Dr. Allen Power (16:01)
okay. then when I when I finished my first book at that point I was getting a lot of a lot of requests to speak and I left my daily practice and just became a full time speaker and consultant. And after a few years my publisher came to me and said, Okay, it’s time for a new book. What what are you gonna do next? And and I thought, Well, I’m not practicing anymore. I don’t have as many stories as I used to have. What am I gonna write about? And in the book I had mentioned well being in the first book as just a

a point that maybe we should be focusing on. And I quoted a recent white paper that had come out from a an organization called the Eden Alternative, which is meant to transform the experience of aging wherever people live. They’ve been around for about 30 years, started working in long-term care, but really are tr trying to transform aging throughout society. And they they wrote a paper about what they thought all human beings need, regardless of age, background, culture, whatever. And

They came up with what they call the Eden alternative domains of well-being, which was seven different aspects of well-being that all humans need in order to live well. And there are a few frameworks out there. They’re not the only one, but I like that one. I like the words they use and I thought they were easy to underst understand, easy to teach to people from various backgrounds. And so I told the publisher what I’d like to do is just take this framework and I’d like to write another book where I just look at dementia through the lens of these seven

domains of well-being and have a chapter for each with some introduction and closing and see where it goes. And I thought it would be a nice little addendum to my first book. It turned out to be 40 pages longer and I learned a lot of things that I never saw before I started looking through the lens of well-being. So I just I’ll I’ll jump to the domains in a moment, but but I have now framed my whole focus around that well being framework.

And I also look at any kind of distress or personal expressions through those domains of well-being because I believe that the lack of well-being is at the root cause of most of the distress that we see with people with dementia.

Melissa (18:02)
Mm.

Dr. Allen Power (18:03)
So what are the seven domains? Well I reordered them for my book. I like I like this order better as far as teaching it. they don’t necessarily have to flow under a certain direction, but but this to me made sense from helping people understand it.

The first one is identity, and identity is who you are. It’s your roles within the family, within society, it may be your occupation, it may be hobbies and interests, your preferences, it may also be your rhythms. Are you a morning person? Are you a night person?

Melissa (18:28)
Mm.

Dr. Allen Power (18:29)
We know when you move into long term care, a lot of times those things get disrupted because breakfast trays coming at seven thirty, and so it doesn’t matter whether you’re a morning person or not, you’re gotten out of bed. And and those things actually cause some of the problems that we’re blaming on dementia.

The second domain is connectedness, and that’s about relationships. It’s relationships with family, its relationships with friends, it’s relationships with social groups, its relationships with animals, its relationships with nature, and the invisible. It encompasses religion, spirituality as all as well. the third domain that I talk about is security. And security is more than physical safety, that’s part of it. But security is also emotional and psychological safety.

and emotional and psychological security includes things like respect and

Melissa (19:15)
Mm.

Dr. Allen Power (19:15)
modesty and privacy and dignity and some of those things. And unfortunately, some of the things we do to create physical safety actually can hamper people’s emotional safety. When we talked about risk a little bit. the next domain is autonomy, choice, control, freedom of expression, freedom of self-determination. And once again, there’s that fragile dynamic with autonomy and security.

in order to help people to be autonomous, we may have to take some calculated risks so that they can make choices or combine with us in making choices. And and this idea of a risk-free environment is kind of a a pipe dream. It does not exist. And so the question is how do we not eliminate risk, but how do we negotiate risk to achieve the best outcomes? Because the next category I have is meaning, purpose.

having a reason to get out of bed in the morning, doing things that give you a sense of accomplishment, contribution to your family or to your community. And you never do anything meaningful without taking on a certain level of risk. Nothing

Melissa (20:14)
Mm.

Dr. Allen Power (20:15)
we ever accomplished happened without a chance of failure. And when you take away all risk, you take away all meaning from people’s lives. And so that’s a really important thing that takes a lot of unpacking, but we’ll touch on it maybe today.

the next one is growth. People can grow. People with dementia can grow in different ways as people. and need an alternative says that you can’t separate human growth from human life. And one of the best ways it’s it’s hard for a lot of people to imagine growth in people living with dementia. Some people can’t imagine it in older people in general.

Melissa (20:45)
Mm.

Dr. Allen Power (20:45)
but what I tell people is if you go in the order I go in, you enhance those first five domains.

identity secu identity connectedness security autonomy and meaning when you can do that you will see people grow.

Melissa (20:58)
Mm.

Dr. Allen Power (20:59)
it it’s it just happens as a course. a new experience can can bring about growth too of course. Variety, spontaneity can do that. And then lastly is joy. And joy is pretty self-explanatory, but it’s not just creating a happy moment. It’s also a deeper sense of fulfillment that comes

Melissa (21:15)
Mm.

Dr. Allen Power (21:16)
from having the well being replenished.

So that’s the framework I look at and when we look at things like the so called aggression, I look at them through the through the lens of some of those domains of well being. And you can identify certain areas that are likely to trigger certain responses when they’re not well supplied.

Melissa (21:33)
Mm-hmm. something that I have learned through my experience is taking the context of what is happening in this person’s life and putting myself in their shoes and trying to understand from

Dr. Allen Power (21:43)
Yeah.

Melissa (21:44)
that perspective how that would make me feel or how I would react. And I think a lot of people would really benefit from s a simple task of like put yourself in their shoes. I know we say that, you know, live a day in a life of someone else, but

truly just even a simple instance of like you mentioned waking up at 7 a.m. having to shower having to get dressed and eat your breakfast that would drive me bonkers I would be aggressive every day probably

Dr. Allen Power (22:08)
Yeah.

Melissa (22:10)
as a result of that. and I think there’s so much value in just that like reflection piece. And you know, if my only purpose was to get up and have breakfast every day

and to get dressed at on someone else’s schedule. I’m not sure that A I would feel that purpose, autonomy, growth, joy, any of the ab identity, any of the above, right?

Dr. Allen Power (22:31)
Yeah.

Melissa (22:32)
and it would become very superficial for me. So I really appreciate what you’re saying and I actually really liked those domains. The other piece that I wanted to touch on is well being. So

You know, we talk about like treating the person as whole and looking, you know, involving the family and all those aspects of holistic care. but many of these pieces of well-being are very much missed in that holistic care. sometimes that starts with positions, sometimes that starts with the, you know, predetermined diagnoses stigma that happens when with family members based on what they know previously of the disease.

but like how do you support families to look beyond that and look at what well being can look like?

Dr. Allen Power (23:19)
A lot of what you’re describing, the inability to put ourselves in people’s shoes or to to really see well being comes from once again most of our education being focused around very narrow medical, biomedical definitions of dementia. And if you go to a lot of dementia education, they teach you what’s in the brain in Alzheimer’s and Lewy body dementia and frontotemporal and and to me, I think it’s equally important, if not more important, to know the person and to know

How how those domains of well-being can be fulfilled. The nice thing about the well-being framework is because it’s universal, it can be used with any person, regardless of their diagnosis

Melissa (23:54)
Mm.

Dr. Allen Power (23:55)
or their stage or whatever you want to call it. So I think

Melissa (23:57)
Mm.

Dr. Allen Power (23:58)
that’s really important. And I realized when I went through this that really there’s no traditional education that teaches about this.

Melissa (24:06)
No.

Dr. Allen Power (24:14)
There are two things going on. First of all, we don’t know in in supporting people with dementia that we’re supposed to be working on this, so

Melissa (24:21)
Mm.

Dr. Allen Power (24:22)
it doesn’t happen. But secondly, and we see this in long term care, but we can also see it as at home as well, that the system of care, the approach to care actually can erode the well being domains further than

Melissa (24:33)
Mm.

Dr. Allen Power (24:33)
otherwise. So a perfect example in long term care we talked about forcing people to get up at a time that’s not their rhythm. another one is rotating care staff so that

people that you don’t recognize are coming in and taking your clothes off and giving you a bath. And once again putting yourself in their shoes, how many strangers would you allow to take your clothes off in the course of a week or the course of a month?

Melissa (24:54)
Yeah.

Dr. Allen Power (24:55)
and and and is an antipsychotic pill going to make you enjoy having a stranger take their clothes off or enjoy

Melissa (25:01)
Mm.

Dr. Allen Power (25:01)
waking up when you don’t want to or enjoy having choices taken away from you. and that’s that’s the fundamental flaw with the pills is because we see disease, we use pills

But we’re really seeing deficits in well-being and there will never be a pill to give people these seven domains of well-being. There’s just

Melissa (25:17)
Mm.

Dr. Allen Power (25:18)
that’s just a a completely flawed approach, but it’s based on two flawed systems, how we the way we think about dementia and the systems of care that we create around supporting people.

Melissa (25:30)
Yeah. so we talk about long term care. Many times in long term care, people are well into that disease process, right? there’s a reason for you know, the need for placement. Let’s pull it back a little bit in the earlier stages. And how do you support

Dr. Allen Power (25:44)
Mm-hmm.

Melissa (25:45)
families that are at home and being the primary caregivers for this either newly diagnosed loved one or someone that you’ve

maybe more advanced but wants to stay home. That’s really a goal of them. How do you

Dr. Allen Power (25:58)
Yeah.

Melissa (25:59)
like continue to support well being not of just the the person living with dementia but also the family that is watching this occur?

Dr. Allen Power (26:07)
Yeah, yeah. You’ve got so many great points here that I have to stop and highlight them too. The well being is universal, that means well being is for everybody. and as they say, you know, on the airlines, put your own oxygen mask on first before helping

Melissa (26:20)
Yeah.

Dr. Allen Power (26:21)
others. And if people do not have well being themselves, then it is very hard to support it or create it for other people.

and so there’s that tricky balance. everybody wants to stay home. I certainly would want to stay home as long as physically possible. It’s familiar, it’s around the people that you love, and it’s it keeps you in your routines and you don’t have to share space or decisions with people you don’t know. So it’s just natural to want to be home and to try to be home as long as possible. It’s great that we have home supports. I wish that there were more resources available.

for home support for families because it can get expensive of course when there isn’t a lot of coverage for it and in the US you pretty much have to private pay all home care and it can be very expensive and and they’re putting all this money into long term care when they could actually keep people home longer if they would share some of those those resources to support home based, home community based care. So

Melissa (27:17)
Yeah.

Dr. Allen Power (27:17)
I’ve a hundred percent behind that. As the person supporting someone

once again, reframing to look at well being, understanding that well being does have carryovers into living at home, understanding that the person is still seeing the world, experiencing the world differently, even though they may be in familiar surroundings. So we still have to put ourselves in their shoes. We still have to understand what of the home is familiar and comforting are the things in the home that are not working for the person. so maybe

Maybe a weight a way around the house that was familiar becomes less familiar and we need to come up with ways to help guide people. Or maybe the sound of the ice machine going in the kitchen never was just blocked out, but now the person is always getting jumpy and saying, Someone’s in the house, what’s going on? so

Melissa (28:03)
Mm.

Dr. Allen Power (28:04)
we really have to kind of audit the environment through the lens of well being and say, okay, what’s working? How can I how can I make adjustments to help this person have well being?

And I think when you look at those seven domains, probably the biggest challenges for people supporting someone at home are in the areas of autonomy and meaning.

Melissa (28:23)
Mm-hmm.

Dr. Allen Power (28:24)
And there’s just a million stories about those. But once again, first of all, we’re taught that people can’t make choices. That’s already going to change our mindset. But second, I think because we’re caring people and for the benefit of our loved ones, we try to do as much as we can for the person. And that

can take away the person’s own sense of autonomy and take away their own sense of meaning when they don’t contribute. So we have to find a way to continue to partner with a person through as much of the day decision making, meaning making as possible. Because when you take away a person’s sense of purpose, sense of value in the home, then that can lead to a to either depression or some other sort of negative reaction to the situation.

So, you know, I mentioned my colleague Jennifer Cars. She did work with Dr. Sherry Dupuis and others up in Waterloo, Ontario several years ago and they published a paper they talked about the concept of authentic partnerships with people with dementia. And I think that’s a great term because it really says we are we are working in concert with the person. If I can just tell a quick story. we just earlier this past week were

celebrating the passing of a friend Mark Roberts who lived with dementia in in the US for many years. And his wife and he, Brenda and he, co-formed a national organization now called the National Council of Dementia Minds. And they’re they’re a very

Melissa (29:47)
Thank you.

Dr. Allen Power (29:48)
important resource organization for people people living with dementia and those who support them. And they told me a story early on in getting to know them that gave a good example of that.

they had a a large lawn and a broken lawnmower. And Mark was searching through catalogs and he decided that he wanted to get this big fancy zero turn riding mower for the lawn that did that his wife or daughter could use to cut the grass. And it was just not in their budget. And their first suggestion was, Well, he doesn’t know finances anymore, he can’t make this decision.

But when they tried to tell him why they couldn’t do that, he got really upset. And they remembered the mantra of people with dementia, which is nothing about us without us. That’s kind

Melissa (30:31)
Mm.

Dr. Allen Power (30:31)
of the way to to look at decision making. And so they didn’t just say, Well, buy whatever you want, Mark, but they sat down with him. They expressed their concerns. They said, you know, this is our budget. Our money’s a little tight. We want you to have the right mower, but this just seems a bit outside. Is there something that would satisfy your requirements that is within this budget?

And they sat down and looked at options with him together and they bought something affordable that worked just fine. And so he was brought back into the decision rather than deciding for him. So I I like to say instead of doing two or doing four, we should do with as much

Melissa (31:04)
Mm.

Dr. Allen Power (31:04)
as possible with any anything in the day.

Melissa (31:07)
I have a a similar motto in sharing with our care teams and how, you know, to support our care teams in dealing not dealing in caring for someone with dementia is Q versus do. You know, we want to set people up for success without actually taking the task away from them. So some something as simple as, you know, putting the task in front of them with limited options is a great way to support someone being autonomous.

but also setting them up for success. so I love the motto and definitely will integrate it.

Dr. Allen Power (31:38)
Yeah, I love that Q versus too. That’s great.

And yeah, and y it takes a little detective work, a little trial and error to decide where the person’s ability to choose lies. Sometimes sometimes you give a little too much space and they kind of flop and fail because it’s more than they can handle, or sometimes you take too much control and and it’s just a balancing act and figuring out where it is. And of course it may change over time and the way we approach these things may have to

Melissa (32:02)
Certainly.

Dr. Allen Power (32:03)
change over time. But we always try to keep the person

there. I I became a bit of a troublemaker in my second long term care job because I was really adapting some of these person centered principles. And it was so common for me to go to a care plan at the long term care home where the person with dementia was not at the meeting. Family was there, all the staff were there, sometimes also not the PSW and that was another thing. And so I began assisting, you know,

I I’ll come back to the meeting when you can have the PSW and the person living

Melissa (32:33)
Yeah.

Dr. Allen Power (32:34)
with dementia in the room. Because they both have the most important information. They were being excluded and discounted. And and even if they say well they won’t understand, I would say, Well, sometimes they surprise you and I think the person needs to at least listen, even if they’re not talking. And if they said to me, Well, he’s in bed, he doesn’t really want to get up, I’d Okay, well let’s go down and meet in their room.

You know, and and

Melissa (32:54)
Yeah.

Dr. Allen Power (32:54)
and really try to get people to include and people have surprised us. People have said things you would not expect, that you would not

Melissa (32:59)
Certainly.

Dr. Allen Power (33:00)
think people were capable of saying or doing just because we gave them the chance. And there’s so many what I call self fulfilling prophecies in dementia care where if you expect less you don’t create the environment and the person doesn’t do. th and there there are many ways that spins out in different care scenarios.

Melissa (33:17)
Certainly. I think the system is set up and flaugh or otherwise, I think the system is set up to have family members take on dementia care as a burden in one way or another. And I think capacity is a big piece of that. when someone is given a a dementia diagnosis, Alzheimer’s or otherwise, the next question usually is who is the decision maker at this point in time? Who is going to decide what care looks like?

And that there’s no there’s no trajectory anticipated. There’s no like, you know, we that conversation happens so quickly in the journey that by nature we discount the opportunity to make decisions. And I think capacity from a legal perspective looks very different from a capacity on a day-to-day you know, basis. You know, dad can no longer choose

Dr. Allen Power (34:03)
Absolutely. Absolutely.

Melissa (34:05)
what he wants to eat because he has dementia.

my goodness, you’ve got to be kidding me. Well, I have POA, so I’m gonna decide. Holy, we’ve jumped from one end to the other. But I think the system

Dr. Allen Power (34:16)
yeah.

Melissa (34:16)
is set up to very much promote that in having those conversations early, which I think are very important conversations, but within a context that’s maybe a little more relative.

Dr. Allen Power (34:27)
And Melissa touching on all my favorite topics today. This is really great. yeah, and I think since we have a lot of family members, it it is good to just run through the substitute decision maker or durable power of

Melissa (34:37)
Sure.

Dr. Allen Power (34:37)
attorney or whatever terms people use. I mean I have one. I don’t have dementia, but w you know it’s good planning to have one, to have a chain of of decision making. But people have to remember what the rights and responsibilities are. First of all, the responsibility,

Melissa (34:49)
Mm.

Dr. Allen Power (34:50)
of course, is

is to try to reflect your loved ones’ decisions as far as you possibly can, as far as you know them, even if they may not be what you would do for yourself.

Melissa (35:00)
Mm.

Dr. Allen Power (35:01)
but the other thing is as you say, we don’t talk about competence. Competence is a legal term which is decided by a judge. We talk about capacity. And capacity

Melissa (35:09)
Mm.

Dr. Allen Power (35:10)
can be held for many different things. You can have the capacity to do some things but not others.

Melissa (35:15)
Mm.

Dr. Allen Power (35:16)
And so as you say, if big financial decisions, transferring property, people may lose the capacity for doing that. They may lose the capacity for driving, but it doesn’t mean they can’t decide what they want to eat, it doesn’t mean they can’t contribute to conversations to decision making. And

Melissa (35:31)
Certainly.

Dr. Allen Power (35:31)
and to remember that the while the substitute decision maker is important in helping reflect a person’s wishes and helping get to know the person, they do not have the legal right to make a decision.

that the person is still making for themselves, even if they have dementia.

Melissa (35:44)
mhm, mhm

Dr. Allen Power (35:47)
So if someone is saying no, they’re making a decision.

Melissa (35:50)
Mm.

Dr. Allen Power (35:51)
If someone is is was given a particular bit of food and they throw it on the floor, they’re saying, I don’t want to eat this food.

Melissa (35:58)
Yeah.

Dr. Allen Power (35:59)
and that may be the only way they can say it. But

Melissa (36:02)
Mm.

Dr. Allen Power (36:02)
we have to always be open to saying what is this person doing instead of saying this is a behavior, say how are they expressing their preferences?

And how can we better understand what they need and what they don’t need?

Melissa (36:14)
Mm-hmm. again, perfect back to behavior as communication. So, you know, we talk about distress, agitation, resistance as communication versus issues or behaviors. So wet I and again, I have these conversations every single day. I think I talk to more families about dementia care than anything else these days.

sadly, with people that are very young and contending with this diagnosis.

Dr. Allen Power (36:41)
Yeah. Mm-hmm.

Melissa (36:43)
and so when, you know, you’re seeing these changes in your loved one, they start, you know, talking about behaviors, agitation, aggression, how do you look beyond those labels and support either in long term care, because for one reason or another that’s where they’ve been placed, or in the home, how do you support families?

Dr. Allen Power (37:03)
yeah, it’s once again it’s a lot of it is reframing. once again it you know, it’s let’s acknowledge at this point what a monumental what a monumental commitment it is

Melissa (37:13)
Mm.

Dr. Allen Power (37:13)
for anyone to support a person with dementia, be it a spouse, a parent, a sibling,

Melissa (37:18)
Mm.

Dr. Allen Power (37:18)
because everybody has their own issues. They might be an older person with their own medical issues, they might be a working child who may have children of their own, you know, in the sandwich generation or or whatever, you know, and

And and they often do it without you know, i I remind people in long term care you have three shifts of people that are coming in and punching in and out, doing all the job that you’re doing by yourself and and and to to acknowledge that. but once again to try to get away from this slippery slope that these are behaviors and that they are caused by dementia. There is something missing and the dementia is affecting it. And if I can just give a a very simple example that I often give to try to make this distinction, because

It may just sound like semantics, but I I often tell people and I’ll have a I’ll have a a class or a or a lecture I’m giving. I did this in Australia a couple months ago, and I said, suppose we were going to do an exercise where I paired you up with whoever’s sitting next to you, and the two of you are gonna go to a shower room and the part your partner is gonna strip you naked and give you a shower. First of all, who’s ready to do that? Of course nobody wants to

Melissa (38:20)
Yeah.

Dr. Allen Power (38:21)
do that. No hands go up.

And I and I say, okay, first of all, let’s acknowledge that it’s difficult to have anybody, even people you know, take off your clothes and bathe you. So let’s acknowledge that if a person has trouble with a shower, it’s not the dementia, it’s the fact that we’re we’re doing something that you and I don’t want to do once and we’re doing

Melissa (38:40)
Right.

Dr. Allen Power (38:40)
it all the time. But but I said, Suppose suppose you go and get under the shower and they turn on the water and the water’s too cold. So what would you and I do?

We would say, hey, the water’s too cold, or we might adjust it to our own liking, which is what I like to do. A person living with dementia who has communication, stress threshold, other issues, may not be able to do that in that moment. So they may react differently. They might scream or shout, or they might try to hit or kick the person who’s giving them a shower. So that’s what dementia did. It affected the reaction. But that was not the cause. The cause was the cold water. And

Melissa (39:14)
mhm, mhm

Dr. Allen Power (39:16)
if you think this is a dementia-related behavior.

Then you might give, as often happens, a sedating pill before a shower. Or you might want to be, you know, more non-pharmacologic and create a lovely spa atmosphere with soft music and towel warmers. But if you don’t turn up the water temperature, you have never solved the problem. And to me, the well being domains are the water temperature. That’s

Melissa (39:37)
Mm.

Dr. Allen Power (39:37)
what we are missing. And we and even with a lot of non-pharmacological approaches, we’ll have people sit down in front of television or listen to some music

But if there’s a deeper need, the need for meaning, the need for choice and control, the need for input or connectedness, then we’re still we’re still missing the boat. And whatever we’re seeing is going to keep happening again and again. And we’re going

Melissa (39:58)
Mm.

Dr. Allen Power (39:58)
to blame it on dementia because we didn’t realize that we didn’t get to the root cause at all.

Melissa (40:02)
Yeah. And

Dr. Allen Power (40:04)
So just very quickly, when people seem to be resistive, no matter where they live, the domains I go to.

Primarily security and autonomy. And once again, let’s look at ourselves, just like you said. I would resist an inter interaction if I didn’t feel safe or I didn’t feel in control of what’s going on. That’s pretty easy. So what are the things we can do? And so what I do is I teach care partners, whether they be family members or or professional staff, how do you do a shower? How do you do a shower to improve the person’s sense of security throughout the process?

How do you do it to to preserve their sense of autonomy? And I ask people without dementia, people in classes, what would make you want to resist somebody? And they say all the things that relate to those domains. They say, if I didn’t know the person, if I didn’t know what was coming next, if they didn’t explain, if they didn’t give me any input, if they moved at a pace that wasn’t right for me. you know, so once again they’re talking about those domains and then a little bit of connectedness too. You don’t want strangers doing this.

Melissa (41:02)
Mm.

Dr. Allen Power (41:03)
So so

So it is about how do we support those well being domains, create a different kind of bathing experience. And then on top of that, because that glass is often empty for people with dementia, you can’t just do it during the crisis points. You

Melissa (41:18)
Mm.

Dr. Allen Power (41:19)
have to do it with every interaction. So we pick we pick one, you know, we pick a glass and we say, Okay, this is autonomy, it’s it’s only that full. And it’s not just about fixing the shower, it’s about how do you improve autonomy in every interaction.

Melissa (41:31)
Mm.

Dr. Allen Power (41:31)
when

the person wakes up in the morning, when the person gets out of bed, when the person is at a meal, when the person’s in an activity. Because we’re trying to fill that glass and what that does is it takes people away from a crisis point during the most difficult times like bathing. It’s like

Melissa (41:45)
Mm.

Dr. Allen Power (41:46)
turning down the heat on a tea kettle. People who don’t have well being are at the boiling point all the time. And when you fill those glasses you turn the heat down and you make it much less likely that even challenging interactions like bathing will set off

a really severe a crisis reaction. So it’s a proactive, not a reactive thing. Which is which is key. And we’re taught

Melissa (42:03)
I think there’s an interest for sure. I think a lot of it is yeah.

Dr. Allen Power (42:09)
reactive things. When they get upset, do this, you know, instead of being proactive.

Melissa (42:14)
Right. So what would happen and I’m just spitballing here trying to put myself again in someone else’s shoes, what would happen if you sent a caregiver into a home and didn’t label it as dementia care? You know, let’s just do a social experiment and say you’re going into doctor Power’s home and he needs to have a shower and there’s no, you know, diagnosis set out. How would

Dr. Allen Power (42:36)
Yeah.

Melissa (42:37)
that behavior of a caregiver or a family member do you think change?

Dr. Allen Power (42:41)
Yeah, well probably they’d start by asking. If they don’t know the person, if

Melissa (42:44)
Yeah.

Dr. Allen Power (42:45)
they don’t have the label, they’d probably say, What can you do? What would you like us to do? Which

Melissa (42:49)
Yeah.

Dr. Allen Power (42:49)
is ideally what we should be saying with a person with dementia too. You

Melissa (42:52)
Ya.

Dr. Allen Power (42:52)
know, are you comfortable? Is the water warm enough for you? what would you like to do first? Would you like me to help you? Would you like to hold the washcloth? We can go step by step through the process and keep that choice and that direction in the hands of the person with dementia. So I think once again, as you say, the label kind of shuts down that thinking.

let’s find out what the person needs. the other interesting thing though is that in long-term care systems, because the systems are very rigid in many cases,

Melissa (43:18)
Mm.

Dr. Allen Power (43:19)
very paternalistic, even people that don’t have dementia and we know don’t have dementia often have choice and control taken away from them because

Melissa (43:27)
Yeah.

Dr. Allen Power (43:27)
we have a very paternalistic attitude towards older people who are in care. And

Melissa (43:31)
Right. Yeah.

Dr. Allen Power (43:32)
and and we you know we do it at home. You know children do it with their parents.

And you know, we we start to it’s the it’s a reflection of ageism and ableism in our society that we start to make decisions for people that are perfectly capable. So so it’s a constant spectrum and we always

Melissa (43:49)
Yeah.

Dr. Allen Power (43:49)
have to be and I’ve you know, when my mother was alive I was guilty of the same thing and I had to catch myself and

Melissa (43:54)
mhm, ya

Dr. Allen Power (43:55)
check my words and my actions on a few occasions.

Melissa (43:58)
Mm-hmm. I think it’s interesting. I’m guilty of it. I call it dementia care and I create that label and automatically change

Dr. Allen Power (44:05)
Yeah, yeah.

Melissa (44:05)
the behavior of the people going in and interacting with these people with a diagnosis. Whereas I don’t say, this is postoperative care or this is cancer care or you know, things like that. So I think the label is a great place to start to say like

you know, let’s remove the label and let’s talk about the person as a whole, right? Which I think is the general idea of care, but we still label it and put that lid on it right off the bat. right.

Dr. Allen Power (44:31)
Yeah. Like it’s different. Like and and

and to get back to a point you made earlier, you talked about how would I feel in this situation or that. When I gave that talk in Australia in June, I took people through a bunch of those things like I mentioned.

Melissa (44:44)
Mm.

Dr. Allen Power (44:45)
You know, how would you feel in this? Remind people that walking is a normal activity, going through a door is a normal activity. What’s abnormal is we lock the door and tell people they can’t leave.

Melissa (44:53)
Right.

Dr. Allen Power (44:54)
so you’re we’re the abnormal ones, not the person with dementia who’s trying to do what we do every day.

Melissa (44:58)
Mm.

Dr. Allen Power (44:58)
and going through those, but I think that

You know what I wanted to say about that is that we are taught to see dementia through the lens of disease and so we do what researchers called othering people. We see them as somehow different from us. And

Melissa (45:11)
Mm. Right.

Dr. Allen Power (45:13)
and and that’s where the the empathic exercises fall down sometimes. ‘Cause people say, Yeah, well I wouldn’t want that, but they need it. You know,

Melissa (45:21)
Mm.

Dr. Allen Power (45:21)
they’re different. And I d I you know, my biggest challenge and one of my biggest activities in any session is trying to s

connect people rather than separate people.

Melissa (45:32)
Mm.

Dr. Allen Power (45:32)
And that’s why I another reason I like my definition about the shift in the way people experiencing the world. Because we all experience the world differently as we grow, as we age. And so once again, this is a definition which connects us, which is definitions that talk about neuropathology separate us. They create a diseased other, as Stephen Sabat would say, that we have to that we that we somehow think doesn’t apply to our situation.

Melissa (45:56)
Okay, so going back to medication, and we talk, you know, in Alberta we utilize AUA, appropriate use of antipsychotics. really a fantastic term with you know, some guidelines and how to follow it, but also under the lid of dementia care again, right? So maybe automatically we’re not setting someone up for success under that program. But how do you talk to families about when medication is appropriate or

w you know, getting away from the use of antipsychotics, not just in long term care, where I know that there’s a focus on decreasing the use of antipsychotics, but then in the home and supporting them to stay in the home.

Dr. Allen Power (46:34)
Yeah, one thing I love, I mean, this the antipsychotics are what got me started down this road. But we’ve been talking for nearly fifty minutes and this is the first we’ve mentioned drugs, which is which is great. This kind of been a whole different kind of conversation that I often get. once again, you know, as I started my talk in Sydney I said that that debates about the appropriate level of antipsychotics are missing the point. Antipsychotics are a problem, but they are not the root problem. They are

Melissa (46:59)
Mm.

Dr. Allen Power (47:00)
a symptom

of those two flawed systems. And and to put it generally, they’re a symptom of an approach that does not support people’s well being.

Melissa (47:08)
Mm.

Dr. Allen Power (47:08)
And when you support people’s well being, the need for antipsychotics goes away. But you have to make sure you don’t get the carp before the horse. And unfortunately our our ministry is telling us reduce antipsychotics by X percent. But you have to start by creating well being or else you’re just gonna restart them.

Melissa (47:21)
Mm. Yeah.

Dr. Allen Power (47:24)
and so we have to get that right. I would be very I could be very flippant and say anti psychotics are never appropriate.

but you may not be in a position at this moment where those identified well being needs can be immediately met and there may be imminent risk and so those are the situations where people may still feel force. But to me it is an emergency response and it’s a short-term response that’s meant to be stopped at some point.

Melissa (47:47)
Mm.

Dr. Allen Power (47:48)
one thing we know is in spite of all the side effects, the risk of heart attacks, strokes, pneumonia falls, constipation, worsening cognition, faster decline

that have been proven. it’s also been proven, and this is published by my colleagues in Waterloo at Jerry Medrisk, that if you take an antipsychotic for more than twelve weeks, the pill will actually kill three percent of people that take it. so three percent death rate one out of thirty-four. just I I decided to to just get a a benchmark for that. And the worst drug recall in US history was an arthritis drug.

called Biox, which was like Celebrex, Reficox it was then generic. And it came out in 1999, was used in US and elsewhere for five years. And what they found was after 20 million Americans took it that people were having excess tests due to heart disease. And they estimated just a b benchmark, about 50,000 of the 20 million people died due to heart disease. And the whistleblower from the FDA went to Congress

And he said it was the single greatest catastrophe in the history of US medicine. Now, if you do a rough mortality rate from that to 50,000 people, that is a quarter of 1%, or 1 in 400 people over five years. So our estimates of antipsychotic deaths are ten times as high as the worst drug recall in American history. And they’re

Melissa (49:07)
Mm.

Dr. Allen Power (49:07)
still on the market, and new ones are being introduced and being approved. So where are we going with this?

Melissa (49:13)
Yeah.

Dr. Allen Power (49:13)
These are real risks.

When you feel you’re pushed to the wall, you know these are the real risks. And once again, this also the the feeling that you need to use an antipsychotic at home may be the sign maybe I need some help. Maybe I’m missing something. Not that you’re a bad person, but but that that monumental task of being the sole person may be getting to a point where it needs some rebalancing through home and community based services, for example, like Ohana Care.

Or maybe in some cases a move to residential care, which sometimes has enabled people to be unmedicated and live better because the the people at home were just overwhelmed and just couldn’t be what they wanted to be anymore. Once again, not through any fault of their own, but it takes a superhuman effort sometimes.

Melissa (49:59)
Mm.

Dr. Allen Power (49:59)
you know, if the person wants to be up at two AM and you have to be there twenty-four-seven and have to make their breakfast at seven AM and do your banking and everything else, they’re probably gonna get a pill to make them sleep at night.

Melissa (50:10)
Ya.

Dr. Allen Power (50:10)
And

and that may lead to more complications, but it’s because you’re not three shifts of employees, you’re one person, and that’s really tough.

Melissa (50:17)
Right.

Dr. Allen Power (50:18)
And that’s like I say, one of the fundamental issues with home care is how do we create better support for people that is more easily accessed. And it also how do we teach the people, for instance, from Wohana Care that come out to adopt these approaches and teach the family members how to use these approaches.

Melissa (50:34)
Mm.

Dr. Allen Power (50:35)
Because

that’s they’ve done that with a couple of groups I’ve seen in the Netherlands and they found that they actually can keep people home longer and keep them out of long term care longer when they actually come into the home, maybe do a shift at the home with the spouse or child, supporting the person and showing how they do it so that the person

Melissa (50:51)
Mm-hmm.

Dr. Allen Power (50:52)
learns some of those techniques.

Melissa (50:53)
Mm-hmm. I think there would be so much value to that. you know, and maybe it’s yeah, it’s not a caregiver necessarily that’s there twenty four hours a day, but supporting the families to adapt to this

Dr. Allen Power (51:03)
Yeah.

Melissa (51:04)
new reality. so from now on we’re gonna say emergency use of antipsychotics, not appropriate use of antipsychotics. Yeah. Yeah, yeah.

Dr. Allen Power (51:11)
Where there’s imminent threat of harm to the person or someone else. That’s what I say. Yeah. Yeah. Now

in yeah, that gets us in the idea of psychosis. And I think just very quickly, because people say that, I think the psychosis is misdiagnosed in people with dementia. And I’ve even heard people that were architects of the BPSD framework saying that what we call psychosis is not the same thing as psychosis and schizophrenia, and the drugs

Melissa (51:34)
Right.

Dr. Allen Power (51:34)
do not work well for that.

This is due to broken nerve endings, not due to too much dopamine. And antipsychotics are dopamine blockers. They in

Melissa (51:40)
Mm. Yeah.

Dr. Allen Power (51:42)
schizophrenia. They don’t work in dementia, and they can be dangerous in dementia. So once again, if you don’t like being undressed by a stranger, an antipsychotic won’t make you like that. If you don’t like being in a confined, locked environment, an antipsychotic won’t make you like that environment. It will sedate you. And when I was in medical school back in the Stone Age, the

The colloquial name for the antipsychotics was the major tranquilizers because that’s what they do. They are

Melissa (52:06)
Yeah. Yeah.

Dr. Allen Power (52:08)
sedating pills. So if you need to sedate somebody because of an emergency, then so be it. But that is what you’re doing. You’re not solving the problem and you in the long term may be increasing their risk of having illness or death due to the pills.

Melissa (52:22)
Yeah. certainly I didn’t see sedation under the realm of well being. So yeah, I w I love the idea of just

Dr. Allen Power (52:28)
Ha ha ha.

Melissa (52:29)
getting rid of it. and and not that I’m not an advocate for time and place where it is a a necessity to keep that

Dr. Allen Power (52:36)
Yeah.

Melissa (52:37)
person or people around them safe, but again I think it goes back to an emergency use. When we label it emergency versus appropriate, appropriate seems like we can make excuses or you know.

determine for ourselves what is appropriate and what isn’t, whereas emergency seems to have a fine a finite terminology to it where there is

Dr. Allen Power (52:56)
Yeah.

Melissa (52:57)
an end to that.

Dr. Allen Power (52:59)
And once again, there is a lot of antipsychotic use in the home. and and in the US for the absolute numbers, there are more people in the community taking antipsychotics with dementia than there are in long term care, just because of numbers. but once again, a lot of people either g ask for or doctors suggest antipsychotics. I would suggest to family members that they use that as a point of

recognition that if I’m at this point I need to look at the situation and see what might be missing that can make this better because I if I have to rely on such a potentially dangerous bill, then

Melissa (53:35)
Mm.

Dr. Allen Power (53:35)
something is out of whack. What do I need? What support do I need? is this the right living environment? Do I have all the support I need? How can I engage others to help me? Because it’s a it’s a tough job. It’s a very tough job. And

Melissa (53:46)
Yeah, yeah, absolutely.

Dr. Allen Power (53:49)
I’m sure I would have as much trouble as anybody else if I had to do the same.

Melissa (53:53)
Certainly. And you know, that does bring me to the point of capacity. We definitely look at the capacity in someone that has the diagnosis. But then I think we also need to look at the capacity of the people that are caring for that person as well

Dr. Allen Power (54:06)
Mm-hmm.

Melissa (54:06)
and what that looks like, right? Because taking on the role of a caregiver is a very difficult job and some people just simply don’t have the capacity. and the

Dr. Allen Power (54:15)
Yeah, yeah.

Melissa (54:15)
guilt that comes along with that recognition.

or they don’t have the capacity to deal with these sort types of behaviors or the capacity to understand. They they’re grieving, you know, and that grieving process,

Dr. Allen Power (54:26)
Yeah, yeah.

Melissa (54:27)
especially with this diagnosis, is exceptionally long. you know, there’s just so much going on. But I almost think we should be looking at a capacity assessment for the caregivers first.

Dr. Allen Power (54:38)
absolutely. And I think that’s where geriatric ass assessment clinics and memory care clinics like the mint memory centers that my colleague Linda Lee has set up across Canada are very important because they don’t just diagnose the person, they look at the whole situation, the home environment,

Melissa (54:51)
Right.

Dr. Allen Power (54:52)
the nutritional, the social environment, and they try to make more holistic assessments of how things are working for people. you know, I read a lot of books in preparing for the ones I wrote and one of them

was was a wonderful first person narrative by a woman who cared for her husband with Alzheimer’s at home. And she talked about how she would engage family members, but she said, each to their ability. So for

Melissa (55:14)
Mm.

Dr. Allen Power (55:14)
instance, there was a there was a cousin or a brother in law or some some relative who she thought really could not handle dementia, couldn’t interact, didn’t understand how to support a person, but she wanted the screen in the front porch so that he could have a place to sit where he was a little bit confined.

So she had him screening the porch because he was a good carpenter. So once

Melissa (55:35)
Mm.

Dr. Allen Power (55:36)
again, use people in the way you can.

Melissa (55:38)
Yeah.

Dr. Allen Power (55:38)
If the refrigerator is noisy, is there a way you can silence that? Or or if you need to change the layout or change the way people find their way around the house, can a little bit of signage and things be created by family members who aren’t really caregivers by nature? And

Melissa (55:52)
Mm.

Dr. Allen Power (55:53)
and as you say, grief is real. it’s great to say people can live well.

But we don’t want to discount the fact that that it’s difficult to live with dementia. The people do have real grief because the person is still there, they’re not fading away, but their relationship to the person is changing, and their their role in the family is changing, and it is okay to grieve those changes and to grieve

Melissa (56:14)
Mm.

Dr. Allen Power (56:14)
those losses, but to still understand that we have, as Richard would Taylor say, Richard Taylor would say, a whole person

Melissa (56:20)
Mm.

Dr. Allen Power (56:21)
there with us and how best can we

Can we try to create as meaningful and engaged a life as we can for people?

Melissa (56:27)
Mm.

I think we’re getting into the meat of that experience from a caregiver perspective now and some of the hardest moments

Dr. Allen Power (56:33)
Yeah, yeah, absolutely.

Melissa (56:35)
of being the caregiver and

you know, w i I think failure is or failure combined with grief is a very real feeling for caregivers.

Dr. Allen Power (56:45)
Course.

Melissa (56:45)
So what do you say to caregivers that are feeling the failing, and and kinda on the brink of where are we at? Do we need long term care? Can I keep doing this? Am I any good at doing this? You know.

Dr. Allen Power (56:58)
Yeah. I have you know, I’ve had a lot of people approach me to say, and I’m you know, we have this situation, is it time to move this person to to

Melissa (57:05)
Mm.

Dr. Allen Power (57:06)
a different kind of residential care? And and once again I’m always using the well being domain. So I look at well being and I say, H how are the person’s well being right now at home? How is your will well being? If they

Melissa (57:18)
Mm.

Dr. Allen Power (57:18)
are both if those glasses are both getting pretty empty, though seven glasses for each of you, and you do not see an easy way to refill them,

then it may be time to recognize your limitations and that maybe

Melissa (57:29)
Mm.

Dr. Allen Power (57:29)
this isn’t this isn’t the best thing. And I know lots of people have family members say, promise me you’ll never put me in a nursing home. You know, you hear that all the time. And

Melissa (57:37)
Yeah.

Dr. Allen Power (57:38)
I heard a great response to that. One daughter said that when her mother said that to her, she said, I can promise you, Mom, that I will do whatever is best for your health and well being at

Melissa (57:47)
I love that.

Dr. Allen Power (57:48)
that time. And and we are human. We are human. It’s

It’s not a failure to ask for help. We’ve we have this society that is so based on this idea of independence and none of us is really independent.

Melissa (58:00)
Mm.

Dr. Allen Power (58:00)
we we are we know everything is is relational and and we have this network of support. And when the network is not enough, we need to broaden that network and it may be to groups like Ohana care or maybe to a different living situation. And and you know, there’s no set rule.

You have to negotiate that with the people that advise you, look at things. And once again, I think that the well being domains are a great the well being domains and the reliance on potentially dangerous medications. Those to me are the the warning signs that maybe this

Melissa (58:31)
Mm.

Dr. Allen Power (58:32)
is not the right the right thing. but then also it’s so important when that does happen for residential care communities to acknowledge and partner with that person who is turning over the support of their loved one.

Melissa (58:46)
Mm.

Dr. Allen Power (58:46)
you know, the nice thing is they can go back to being that family member and not have to be the nurse and the PSW and the social worker and everybody else. And that

Melissa (58:50)
mm, yeah, yeah

Dr. Allen Power (58:54)
can be freeing for them, but often you know there’s not a good collaboration and sometimes people can even be seen as being demanding or difficult. And and

Melissa (59:03)
Mm.

Dr. Allen Power (59:04)
so I I remind staff members to look at the well-being domains of family members and say, imagine turning your loved one over to another

Melissa (59:10)
Mm.

Dr. Allen Power (59:11)
place.

what happens to your identity, what happens to your meaning, what happens to your security, what happens to

Melissa (59:17)
Ya.

Dr. Allen Power (59:17)
your connectedness. So how do we fill the glasses of people at home? But also after they have transferred a loved one to our communities, how do we continue to engage them and and fill their well being domains too?

Melissa (59:30)
Mm-hmm. Yeah, I I I think the the guilt that someone feels when asking for help or when even saying like, my goodness, how do I deal with this? w even if they haven’t gone as far as recognizing that support is needed, the guilt that comes along with that is really fascinating and and terribly tragic because we don’t see that in other realms when we ask for support.

Dr. Allen Power (59:57)
Yeah. When when you know when I think of myself, my propensity to feel guilty in this situation, yeah, I th I think it’s inevitable. You’re gonna

Melissa (1:00:03)
Yeah.

Dr. Allen Power (1:00:03)
feel like you failed. You feel like, you know, you’d you this person you loved, you couldn’t do everything that they needed.

Melissa (1:00:09)
Yeah.

Dr. Allen Power (1:00:10)
but once again that is also the advantage of those communities engaging family members in a collaborative way to help support the person. And once again it’s not necessarily taking over day to day decisions, but it’s giving input

Giving input into the operations too. I’m working with a group, the Thrive Group in Hamilton, and they’re going through my approach to dementia, but they are also creating working groups to make the operational changes that are necessary to make person-centric care a reality, like flexible wake-up times and consistent

Melissa (1:00:35)
mhm, mhm

Dr. Allen Power (1:00:37)
staffing. And they’ve actually created working groups to help make these make these shifts, and they have residents and family members on every working group. So what that does is you know it doesn’t eliminate the guilt, but when you know that

you continue to have a voice when your voice and your support continue to be part of that person’s day, I think that can assuage the guilt a bit too. And so that’s why

Melissa (1:00:59)
Mm.

Dr. Allen Power (1:01:00)
it’s important I think for care communities to

Melissa (1:01:02)
Mm.

Dr. Allen Power (1:01:02)
find positive ways to collaborate with families beyond the transfer from one place to another.

Melissa (1:01:07)
Mm-hmm. And I think normalizing support, right? I mean, again, our system is set up

Dr. Allen Power (1:01:11)
Yeah, yeah. Yeah.

Melissa (1:01:13)
where you have to pursue it, right? Instead of that support being brought around you. And, you know, say you have someone pass away, automatically your community is right in your home and, you know, providing you with that support without having to ask for it. But in this realm, you have to put yourself and your pride and your autonomy and all of those things, your well being aside and ask for help.

Which becomes very difficult for someone. But if we normalize the support for someone to stay at home or to transition into a long term care or residential care, that just happens automatically and very organically. And I think, you know, from a systemic that’s where we need to start with the education and the normalization of support.

Dr. Allen Power (1:01:54)
Yeah.

Yeah, absolutely. in the last chapter of my second book, there’s a chapter I co wrote with my co Australian colleague Daniela Greenwood, and we talked about moving beyond dementia to what we call an inclusive society.

Melissa (1:02:07)
Mm.

Dr. Allen Power (1:02:07)
And really we need to reframe the way things are. People are expected to be independent, expected to get their own groceries, do their own things, and if they can’t do it, it falls on blood relatives.

Melissa (1:02:18)
Mm.

Dr. Allen Power (1:02:19)
We need to create much more integrated communities of support. And there are people doing that. There are norks and there are time banking and there people looking out, you know, n the the different village to village groups and neighbors looking out for neighbors. But I think we need to, as you say, normalize that more. We need to create it it truly, I would say, takes a village to

Melissa (1:02:38)
Mm.

Dr. Allen Power (1:02:39)
care for people with dementia and for older people in general. And until we shift our society to be much more communal

and less individualistic, I think it’s gonna be a real struggle for people as they get older.

Melissa (1:02:50)
Mm-hmm. Okay, so let’s wrap everything up. I know that you and I can talk for hours and hours and hours,

Dr. Allen Power (1:02:54)
Okay.

Melissa (1:02:57)
probably, and really get into some really nitty gritty details of how to support and, you know, create a really perfect environment for people, but let’s talk, just wrap it up and talk about the reality of the situation. So a diagnosis of dementia is not the end.

a meaningful life, people can live with dementia and still experience that joy, connection, and growth. and that comes through that well being setup. And it’s not

Dr. Allen Power (1:03:24)
And yes, and

my my my second book, Dementia Beyond Disease, the first one was a bit more focused on long term care situations because that’s where I was working. The second one I intentionally gave more home and community examples,

Melissa (1:03:34)
Mm.

Dr. Allen Power (1:03:35)
and there are lots of stories in there with each domain of well being about how those were improved with people and the changes that came as a result. So it’s a good resource, I think, probably a better resource than the first book for family members to read if they want to hear more about those how those well being domains interact with dementia.

Melissa (1:03:52)
Wonderful. so start with well being. let’s address behaviors as communication and go back to living a life worth living and thriving, right? I think that’s a those are big takeaways for anyone in any stage of this journey.

Dr. Allen Power (1:04:08)
Yeah, that’s it. And Bill Thomas, co founder of the Eden Alternative, the first book he wrote about this was called Life Worth Living. So I think you’ve you nailed it right there. and yeah, how do we continue to live until the day we die?

Melissa (1:04:20)
Yeah, amazing. Thank you so much, Dr. Power, for joining me today. I really look forward to hopefully chatting with you again. Please

Dr. Allen Power (1:04:23)
it’s a pleasure, Melissa. Thank you. Yeah.

Melissa (1:04:29)
take a look at Dr. Power’s books and you know dig a little deeper into the resources that he has available. Or, you know, next time you’re in Canada, I would love to hear your chat and be a part of that. So

You know, and and and there’s lots of resources out there for anyone that is going through this journey or even just wanting to educate themselves on this journey. So please, you know, share this episode with someone in your life that may be addressing this or just has an interest in preparing for what the future may hold. So thank you so much, Doctor Power again.

Dr. Allen Power (1:04:59)
And yeah,

and and tip of the hat to the Alzheimer’s Society out in Calgary too. They

Melissa (1:05:03)
Mm.

Dr. Allen Power (1:05:03)
they do great work. I’ve worked with them before and and they’re a

Melissa (1:05:06)
Yeah.

Dr. Allen Power (1:05:06)
good resource.

Melissa (1:05:07)
Yeah. And a call to action to the government, let’s provide some more resources and create that village for people.

Dr. Allen Power (1:05:13)
Yeah.

Yeah, okay. Beautiful. Thanks, Melissa. You’re quite welcome. It’s

Melissa (1:05:17)
Awesome. Thank you so much for joining us today. Take care and we will chat soon.

Dr. Allen Power (1:05:22)
a pleasure.