Care Home Quality Podcast - episode 3 with Dr. Keren Wilson, the pioneer of Retirement Villages

Liam speaks with Dr Keren Wilson, the pioneer of the Retirement Village concept.

Liam discovered Keren through a book he was reading by Atul Gawande called ‘Being Mortal’, who talked about how Keren’s work challenged the nursing home dominance in the USA, by providing a less restrictive lifestyle and honouring the person in patient-centred care.

Her work is about creating autonomy and respecting the quality of life in older people.

Listen to episode 1 and episode 2.

-- Abbreviated version of the podcast --

An introduction to Keren’s journey in the care industry

For the last 18 years, I have been running a foundation a charitable foundation and I just recently in fact started the second one.

First Foundation to Jesse F Richardson Foundation was named for my mom which is a long story in itself.

The second one is called H+ and the purpose of the foundation and H+ is to work with communities that want to find better ways to support older people, and often they know they need to find solutions.

So we use a model that's called Asset Based Community Development.

That's really just a fancy way of saying work with what you've got.

I came to that idea because I was asked by a friend in the Pan American Health Organization about 20 years ago to do some work in South America and I happened on a picture of a woman in a wheelbarrow that have no leg and I asked her about the woman and she said that's the face of Aging in most of the world.

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And that made me start thinking, how do you work when resources are scarce?

How can you pull together strategies that support people who need support and so for the last 18 years, that's exactly what we've been doing, is building Community Support Systems where there is limited or unavailable funding for older adults.

We worked internationally and domestically in the United States.

So that's what we're doing right now.

The place where it all began

Well, actually college is a good place to start. I began as an undergraduate in an honours program at the University of Washington and my topic was community support for older adults.

I continued that in my master's program, only at that time I actually thought I was going to work for the government.

So, I had an internship and then I discovered that I wasn't meant to work for the government.

I didn't like it very much, so I decided to keep on going to school - when you don't know what you're going to do it's always good to go to school, right?

I went on to get my PhD, and at the time when I decided to get my PhD, I was pretty settled on Aging as the area and part of the reason quite candidly was because it was a program that would give me a fellowship to study aging!

I've been working in the field and I thought, wow, this sounds pretty good, it'll reduce my college debt. So I accepted the fellowship and began my PhD work, and the more that I worked in the area of policy the more I saw avenues that I thought offered opportunities to think differently.

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So I determined that, being like a lot of University students, I determined that all I had to do was point this out to other people but it almost never works that way.

So I had this idea that if we provide services to older people who were living in low income apartments, they can stay in those apartments longer, it made sense to me.

But it didn't make any sense to the state government, we're in Oregon where I had come to go to school.

And so I thought about it and I thought this is the right thing to do, but how can I convince somebody else that it's a good thing to do?

And it actually took an economic crisis for them to get interested. So we had a recession in the early 80s, and I said, well I said, you know, I think I can deliver services for your population that you're responsible for at a fixed price.

I'd like to try it. I'd like to demonstrate that for you.

"Rather than making people dependent, we're supporting their independence."

But before I got that far, I needed a building, so I tried to get a loan from the bank, a conventional loan and the bank said, what is this? We don't fund stuff like this.

So then I heard about a new government program that was for housing.

And so I went to this Bond program and I said, I want to build these apartments for older people.

And they said oh that sounds really good. They didn't have any clients at that time I was their first client.

So I told him I was building apartments, but then I got a license like the same time as I went to the state and I said, you know, I can do this service for less money but I need you to give me a waiver.

Okay, so we'll sign a contract you'll pick the people.

So I really told the state one thing and I told the lender something else until they got to know each other.

But what I discovered is that if you have an idea you have to fulfil somebody else's need with your idea.

You can't just assume because it makes sense or it's the right thing to do or it feels right, that anyone else will care.

And and so what I what I discovered is that the bond program needed borrowers and they didn't have any because people didn't want to fool with it, this new program looked like a lot of work.

The state was in a budget crisis and they needed to find a way or they were going to have to take people out of service.

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I had an idea that would meet the needs of both groups of people.

I knew that there would be a private market for this because I looked around and there was nothing, so it was this huge hole in the marketplace that I knew I could serve in the private market because there was there was nothing there was no competition.

It was something that didn't exist. What I'm talking about opened in 1983, the first project.

So now, after I built the first project is when I went to the state and I said, look, I said come and look at this.

Your Medicaid clients can live in this environment and it'll cost you less money. And I said to them, you can pick them, you can do a study. I am so confident that this will work.

So the other thing that I've learned is that you really need to study and figure out what your parameters are so that you can be confident of what you offer because there's nothing worse for anyone than to promise an outcome that you can't deliver.

So, that was the second thing that I learned is that, you know be thoughtful about what you offer.

"I can't necessarily change the disease, I can't necessarily change the disability. I can support it in a way that feels better to people."

Because what you want to do is do better, right?

And that was the second lesson that I learned. I learned that people were anxious to find solutions.

If you could give them enough to think about, you could change lots of things because mostly people do what other people are doing.

You've got to change it up and some way and say, look I know you do it this way, but have you ever thought about doing it this way?

Because it can work and so sometimes it's not a huge difference, it sometimes is just a reorganization of how you think about a problem or strategy, and that's where things like language has become important.

The other thing I learned is that I needed a new language. I needed a new I needed a new framework.

I had to have a framework to talk about something. So even though 80% of it was the Fang new language and the 20% that was different was Radical enough to make it feel like it was totally new, so had the same levels of care, had the same kind of people doing the care, but a different environment and a different philosophical framework about how you approach supporting people.

So, rather than people being objects of care they were the centers of care. If I put the older person at the center then it really changed the delivery of services, the language that the the strategies for supporting people.

So rather than making people dependent, for example, we're supporting their independence.

No one's really independent, but you have to think about it. It's like what do people need, and in some ways older people are just like every other group of people.

They need relationships, they need autonomy, they need control over their environment, they need choices.

And so when you started thinking about those things and you put those at the center of how you organized what you did it radically changed how you did it.

It didn't change what you did but how you did it changed radically. That was really the core of the service aside.

The environment was really different, environment was not a room, it was an apartment and it was a totally under the older person's control.

They can have pets, they could smoke, they could bring their, you know, bring their knickknacks.

All of these things were a matter of looking at those values that older people themselves said were important to them.

And so the whole notion was what would make me happy as a person?

I can't necessarily change the disease, I can't necessarily change the disability. I can support it in a way that feels better to people.

But I can do all the things that make them the center of the above their own of their own life.

And that was what was really different.

I think that it's not the setting so much that it's important, it's how we do those things for people and no matter who they are, what age they are, how do we do that?

And the more we prescribe the more we make boxes the less people have that ability, right?

So, if when I'm thinking about how to approach this issue of support, I'm thinking, okay so what is it about how we're doing this that makes it harder, that makes it uncomfortable, that makes it unpleasant, that makes it that I'd rather not have it then have it that way, and so I think so many of the things we do we do it for our sake.

Should safety ALWAYS be the number one priority, or do residents look for something else?

Well, I think this part of the best part of the dilemma. Frailty in and of itself does not mean mental incompetence.

And so entering into an arrangement to receive support whether it's by in your home by a paid caregiver or in a congregate setting by a team of caregivers, should not mean that you have to give up all of your right to take risk.

So often, both the regulatory agents and the public and the family and the care providers all think it's really their job number one job is to keep people safe.

I'm here to tell you that that's not the number one desire of almost all people.

Obviously, they don't want to be exposed to ridiculousness, but they, you know, they are willing to have an opportunity to make decisions that involve some risks to them.

And so often the way we organize care doesn't allow them the dignity of that decision-making.

I had a friend and he said something that I've never forgotten because it really has governed a lot of my thinking, he said what we want for ourselves is autonomy. What we want for those we love is safety.

I think people are not motivated, some people are motivated by fear, but also they're motivated by concern and love.

"When you have rules the way they are you prevent, you actually are preventing people from being in charge of their own lives."

And what they don't understand is that you know, you can't keep everyone perfectly safe because if you did, life might not be worth living.

We created an environment that looks different and felt different. Imposed a new language and created new processes. For example, a service plan rather than a care plan, to see what they wanted and so everything was geared to that service plan. That was that was negotiated with the individual. That service plan became the way in which service was organized, and once we had demonstrated outcomes by a research project that demonstrated, you know, higher scores on virtually everything including physical abilities, then we wrote new rules.

When you have rules the way they are you prevent, you actually are preventing people from being in charge of their own lives.

And that doesn't mean that you know, you can say well, you know, we don't want to feed you because you said you didn't want any supper, what it means you say, okay, you're not hungry now, we'll have it waiting for you.

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So you create a process where you negotiate when the person wants something, okay that it's not necessarily in their best interest, but we do that we do that in our personal lives all the time, with children, with spouses, you know, we say, we'll come back to this.

But people think that because people are old they don't have to be that kind of negotiating. We're in charge, so this is how we do things. You don't like it? Well too bad.

So we really made it. So it was actually part of the rule that you that you did it a different way in a different language. And the regulator was looking for that service plan and how you were implementing that service plan.

Autonomy vs control

You have to say, okay, well, we want to give people more autonomy. We want to give people more ability to make decisions.

What are the processes that we can use that facilitate that so that we're not taking advantage?

So you can't just say well we want them to have a choice. They said they didn't want to eat.

They said they didn't want their medicine.

They said they didn't want this special diet.

You say well, it's incumbent upon us to say ‘okay’. So let's think about some options because if you don't take your medicine here are some consequences and what can we do about that?

So you have to have a process of managing decisions that are not the best or I may have serious consequences for people.

But on the other hand, if you're 92 years old and you really are diabetic and you want to eat ice cream, right? I know what I would do, but I know what a lot of communities might do okay and sometimes they're bowing to pressure even from families.

So, you know, you have to bring the significant others, not just the regulars but the families, and saying well, you know your mom what's really really important to her yeah is B and you want us to do A.

My husband's mother, he wanted her to go to activities.

She lived in a community, right and he would tell the manager, my mom needs to go to activity she just sits in her room.

Yeah, and I said to him, well isn't that part of what we tell people if that's what they want to do? It's okay.

So you can't have a different paradigm for thinking about your family member. It's really interesting how creative and Innovative you get.

You begin to think of different ways that people can be more of what they want or have more what they want and reduce the risk.

Once you commit to the idea that they might make bad decisions or residuals that could have bad outcomes, then you find yourself working really hard. If I'm committed to this then what can I do?

How can I help this person reduce that risk?

Well, you know if you make a commitment to certain principles then you have to think about how to operationalize those principles.

So if you have a framework for thinking about this and those that framework is centred around person-centred assertions, and then what you do is you find yourself trying to figure out how to help that, how to support that.

Obviously, there's a balancing that's going on, particularly in a congregate setting, because you know, you might want to wander naked down the hall but you don't have you don't control all of the space you only control your private space.

Yeah, so you have this Balancing Act between the private space and the common space got it because it isn't anything goes in the common space.

You know if we all make perfect decisions all the time about ourselves personally, I'd probably be a lot healthier, thinner and live longer and maybe a bit more boring as well.

It isn't really magic, you know, it's just persistent belief that you can actually change the Dynamics of the situation and part of that comes from the leadership and part of it comes from the people engaged in the caring.

Because by the time they come to work they've already learned a lot of authoritative/authoritarian strategies. It's really quite one of the biggest challenges retraining the population that is already working in the field.

Communicating a newfound language

It's sort of like if you have something that you believe is a response to a situation then I think you know you keep looking for ways to bring that change about what you think can make a difference.

I would have never built my first building if I could have convinced someone else to do it.

I would have never got this state to do the pilot if they had asked me first.

I mean, I would not have gone to them.

You have to be willing to put yourself out there and you have to be willing for other people to sort of rolled her eyes and make fun of you.

They had a name for me in the state they called me the stovetop lady because I wanted stoves in the apartment.

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So, I think what I'm trying to say by this is that if you are clear in your vision, okay, and you have what you think are the elements that are required to act upon that vision, if you can't convince others, then you do it yourself.

Just do it yourself.

Change does not happen because people talk about it, it happens because people do something about it. It took me 10 years to do five buildings because because each one I did sort of by my own elbow grease, in the United States we call that Sweat Equity swear.

"Change does not happen because people talk about it, it happens because people do something about it. "

I didn't have any money, what I got was, I got what I got by using other people's money and so it took me ten years, and then finally some other people began to see and truthfully what they began to see is that they could make money.

When you just had one it was like, there's an expression called a pet rock, people used to have pet rocks and it's a silly thing but but anything that's sort of a fad, it won't last sure.

One, they said that. Two, they said well, it's Oregon and they said well, maybe we can make some money on this too okay.

And it was only when I had already had a model by that time after five, I knew exactly how much Capital how much financing.

I knew exactly at that time I was able to demonstrate the financial viability of the model to people really didn't care about the philosophy, they cared about capturing a segment of the market.

I always remember what my friends tell me because they turn out to be pretty important lessons.

Usually, one of my friends when I was worried about, oh my gosh, what's going to happen if other people do this?

They might not do it well.

He said though, would you rather have perfect for a few or a lot better for a whole lot?

So when I thought about it, I thought well, that's true because I couldn't do thousands, maybe but I certainly couldn't control them, the quality of those thousands.

So, when he told me that it made me think that's true for a lot of things. That was really great advice.

So what is your really what is it you're really after here? Do you want to improve the lives of the lots of people or do you want to make it perfect for a few?

I really I remember that a lot now. How did it all unfold from where you started to where you are now?

You have a couple of different paths you can follow. In your first project you really don't have as many choices if you don't have personal resources, so if you don't have personal resources, generally what you have to do is you have to give away almost everything to get the capital to do it, right?

But then if you have been prudent, you use that as seed money for your next one.

So you give away less on your next one. So I used a series of Partnerships. I used people who had skills that I needed but Architects and and developers and construction people.

So I created Limited Partnerships for every project and that's how I got the capital to do my first projects.

Then by the time I had after 10 years and I had actually had six, then I raised public money.

The problem with public money is that it’s different than Partnerships because you have many more Partners than you have, but I believe there's another strategy that you can use in place of public - when I say public money, I mean in arca-swiss Wall Street.

I think that there is another way that you can do it now, because there's enough people that if you follow a similar model you could create a new a new model that would bring together Angel Investors who take a lower rate of return to achieve a particular social goal.

There are there are more of those and that's particularly attractive model to younger people.

Another variation of that is to create a Cooperative model where people by a small piece. It's a way to be a bond buyer for for small investors.

Usually that's a short-term, like maybe 10 years and they can get their money out which gives you the enough time to stabilize a project and reduce the reserves to pay them off.

So then you are more of the project. I'm actually pretty inventive. I mean what you really want is you want people who are not totally driven by money.

So what you know what you're really trying to do is find people who they don't mind making less, if they think that the benefit there's a social benefit.

They don't they don't want to or they don't have the money to just give it to you but they're willing to take a lower rate of return.

But it's important, particularly for new models to go for the user should go for The Sweat Equity of model or The Cooperative funding model.

Where's the money coming from to build this capacity?

People talk about a tsunami but we don't have a tsunami.

We have a rising lake.

In the United States or in Oregon for example, by 2035 we will have as many people over the age of 65 as we will have under 18 and my study of demographic tells me that that's a global trend, that's not an Oregon Trend.

There’s a big gap with nurses, but that's because nurses are doing stuff that they don't have to do.

I mean we have to rethink the roles of how we support people including how we use technology to support people.

We have all sorts of strategies that we're not taking full advantage of yet but we'll have to.

The use of technology in the care industry

We don't have a choice because when you're when you're looking at this age column an age pyramid, yeah, we have to think about new ways to help people take care of themselves for longer.

No matter what setting they're in whether it's a congregate setting or in a single home or even a nursing home, we have to find ways to help them do more to take care of themselves.

And we really have some really exciting technology that's just about ready for prime time.

Don't discount leadership because gadgets are only gadgets and how we use them and how we organize their you surround a person is really important because I know lots of older people that their children by them lots of gadgets that they don't use so the idea of thinking broadly about the weaving in of those gadgets into their everyday lives is really really important and that takes Innovative leadership and Innovative thought leadership.

What was your biggest obstacle?

The greatest obstacle was resistance to change.

Because nurses didn't want to give up giving shots.

Families didn't want Mom to eat ice cream.

Regulators didn't want to have a bad thing happen.

So the greatest obstacle was getting people to be open to change, except the consumer, right?

I had to run my first building because I couldn't find anyone who was willing to do it a different way.

I know for sure that we're trained and have degrees nuns at this isn't no you can't do this, this won't work.

So I actually had to run it myself and I didn't know a darn thing about running a building.

"I think of myself as an AZ person - I have an idea and I know where I want it to go, so I'm not that crazy about the middle part, and that's what I was doing."

You develop policies and you develop the procedures, I mean I literally wrote them by hand because at that time we didn't have a lot of laptops, you know.

I built it up myself - not because I wanted to because I had to.

It wasn't that I was not willing for someone else to do it, but I had to find someone who's willing to do it, and that was the resistance to change.

I worked with every group that I can think of that presented themselves as advocates for older adults.

I wrote articles, I gave tours, I gave talks.] I just said come see, come see, come see! 

I kept writing about it, you know, I wrote from every tribe journal in the world, because yeah because you had a big gaudy announced that needed to be thinking differently and depending on the audience my message was different.

When I was talking to money people I said, you can make money I'm doing it.

When you’re talking to nurses you say it is safe.

See you can do this.

So depending on how you were segmenting your audience, make it relevant to their concerns.

When did you say ‘enough is enough?’

In total it was about 20 years.

When every day you're not thinking about the client, but you're thinking about the employee whose stealing or the regulator who says you can't do something when you really are only dealing with problems and not with what you really want to see happen which is training and helping people come together to create something, then it's not fun anymore.

I didn't want it.

I mean I had already accepted it couldn't be perfect, but I didn't want it to be only about problems other than those that concerned the people that were living in the buildings.

I had a Health crisis. I had two back surgeries and I had to think for a while.

I wasn't flying anywhere and I was I was just really tired and I thought, okay, well, you've proven your point, you don't have to do this anymore.

After the retirement villages I had 7,000 residents and 3,000 employees.

I was looking at 18 states and that was the specific organization that you helped to build up. When you have 3,000 employees that left a lot of HR.

I helped several brands to get started because I knew there was plenty of room. Big big market.

So especially in the first 10 years I probably helped five other companies. I really didn't see myself in that role.

I think of myself as an AZ ,okay, I have an idea and I know where I want it to go so I'm not that crazy about the middle part, and that's what I was doing.

What skills and behaviours do you have which have helped you succeed?

I think I'm I think probably I'm really good at seeing a different way to put pieces together.

I mean there's this piece of information or that piece of information or this piece of information and I think I'm really good at seeing how they can go together differently.

I think that's been really helpful. It helps me come up with new ideas about lots of things.

I say, I mean, we probably call that. I don't necessarily see.

I don't necessarily have the same way of looking at different things and putting them together, so and I'm not afraid to talk about it.

Even when I don't have a lot of information. I'm not afraid to put myself out there. I also manage my risk, I'm not reckless.

But I'm not afraid to propose something that other people might think is preposterous.

Keren’s background

I grew up in a very poor family. My father died when I was young.

I always in my family have been the fixer, the problem solver and I was the fifth of six children.

I was the primary caretaker for my mom and even I always watched a lot always watched, sort of watched people, watched events and thought about them.

So I would say that for me understanding why people did the things they did was really helpful to me.

I spent a lot of time even as a child observing and listening and listening became very very important to understand why people do the things they did.

And so it helped me in being a mediator in my own family, and it helped me be a mediator for my mother because she was in a care home and she was pretty ornery because she wasn't where she wanted to be.

So, I learned early on to see different sides of a situation.

And that is one of the things I think came in handy to me is understanding how you get both sides to win.

I never really thought of myself as an academician, I always thought of myself as a problem solver.

I always felt that that was the role of people who were educated to find solutions to problems.

For me, it was like everything was about solving problems, finding solutions, creating, rethinking how you did things so it would work better for people.

My first goal was to be an archaeologist and my second goal was to be an astronomer and then I wanted to be an investigative journalist, and I see how all those things fit together because they all are about discovery and they're all about examining things and finding new things.

And so I understood that about myself as what I was interested in is looking at a field and thought what is it that is missing here?

"My mom said there are three kinds of people in the world are those that could and don't, there are those that would but can't, and there are those that can and do - and you want to be that third kind of person."

What is the pattern here?

And how does it fit together?

And so I think that's really how I think about things.

I want to see and I want to understand that I want to make change when it will make things work better.

And of course, my mom was a remarkable person. She was a great influence on my life. She told me, well my dad died when I was young and we were quite poor, and one time what we used to call hobos came to our door looking for food money and food and my mom said I don't have any but you can eat with us.

And I asked my mother why?

She gave him some of our food because we really didn't have enough for ourselves.

My mom said there are three kinds of people in the world are those that could and don't, there are those that would but can't, and there are those that can and do and you want to be that kind of person.

And the answer to that is everybody.

Every single person even the most frail even the most poor even the most isolated person has the ability to be that third kind of person and that's my belief about everyone including older people.

They have the ability to give as much as they get we don't give them the chance.

So whatever we do that reinforces that to give people purpose, to give them the ability, to give as well as receive, then that's a really important thing to do. That's something you don't do very much for older people.

My mother was a strong woman. She believed in her children and she did make great sacrifices for her children but she expected us to contribute in what ever way we could.

It's understanding that people are not autonomous in not being interdependent, and we can foster that interdependent and not look at it as it's natural.

But we tend to make people dependent because that gives us more power. 'I did I help this old person'.

It's like well, but y if you're thinking about it in a different way, they're helping you. They're you know, they're giving you things that you might not otherwise get if you're open to getting them.

They're just sort of stereotypic but you know, your neighbour could say, you know, I called you because you left your garage door open. Oh, I'm so grateful for you to do that. Thank you for being so thoughtful.

I mean that doesn't sound like much but those are the kinds of Acts of reciprocity. It's so important to generate a sense of purpose.

People that were supporting older people and taking care of older people, which I don't even like that word, but if they really believed that it would radically alter how they thought about their work.

"Don't be afraid of failure but try your best not to. So, in other words, you plan not to fail, okay, but don't be afraid to fail."

Liam's next episode is with the congenial Neil Eastwood. Neil is a very well known figure in Social care.

He's the author of Saving Social Care, very insightful man, fairy professional great sense of humor and his book he put in at least eight years of research all across the world.

It's really a tour de force for how to recruit well in social care and is a really interesting guy. 

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