Podcast #123 The Experience of Aging and the Myth of Independence – Sonya Barsness, Gerontologist

Sonya Barsness brings theory and practice together in her work and teaching. As she says, “I don’t think we should be teaching about aging without older adults at the table…. In my classroom, they are equal participants.” How can we improve the experience of aging in the 2020s in the US? What would it mean to be more positive in our understanding and actual experience of aging? What do seniors need as they age? What do humans need at any age, and how do we keep it or create it as we grow older?

https://www.sbcgerontology.com

www.facebook.com/SonyaBarsnessConsulting/m

Transcript:

Diane Hullet: Hi, you’re listening to the best life, best death podcast, and I’m your host, Diane Hullett. And today my guest is Sonia Barsnes. Hi, Sonia. 

Sonya Barsness: Hi, Diane. I’m so happy to be here with you today. Thank you for inviting me. 

Diane Hullet: I think this is going to be a great conversation. Sonia and I connected, I guess, over LinkedIn, something like that.

And she’s a gerontologist and I just thought we could have a really interesting conversation because your work is both very theoretical and then also very like boots on the ground. And, and I think that’s what’s needed in our, in our system for older people. So, you know, let’s just start with like, what’s a gerontologist and how did you get into this work?

Sonya Barsness: Yeah, so I like to say that us gerontologists have an identity crisis, because it’s, we’re not very well defined. And to be honest, our field has not done a great job of, I think, defining what gerontology is, and especially for the broader society, explaining it. So It’s kind of easier to sometimes start with what I’m not, and so oftentimes when I go out in the world and I talk about being a gerontologist, people assume that I am a medical doctor.

I am not. So gerontology is the non medical study of aging, the non medical side of aging and being an older person, and so As a gerontologist personally, I look at the side of living, you know, living as a person who is growing older. And I would say most gerontologists would probably agree with that to some extent.

So just at a really basic level, there’s gerontology and geriatrics to distinguish the two fields. Geriatrics is the branch of medicine that deals with growing older and the conditions and wellbeing from a medical perspective of people growing older. Gerontology is more the multidimensional study of growing older.

So we’re looking at it. It could include the medical experiences of growing older, but it is not from a medical lens. 

Diane Hullet: That’s that makes so much sense. I’m so happy to hear that distinction, right? So it’s the non medical, but there’s so much non medical in our lives at any age that how do we kind of approach that and get a handle on it.

And as you said, especially as we age. It might be impacted by the medical or the physical, but it’s more than that. And you also, I love it. You, you say that you’re a revisionist gerontologist and I love that addition. What does that mean to you? The revisionist part. So, 

Sonya Barsness: yeah. So I. I believe that the paradigm of aging and also the paradigm of dementia in my case, because that’s a focus area of mine, needs to change.

And so I call myself a revisionary gerontologist because I believe that my work is all about changing the way we think about the experience of growing older and growing with dementia, the way society sees older people and the experience of aging. The systems that we need to better create to support each other as we grow older.

So there’s a lot of revision that really needs to happen. And, you know, unfortunately, I think the experience of aging is, is wrought with so many isms, you know, ageism, sexism ableism, that our narrative of the, of growing older really needs to change. And, and it’s reflected in the way we talk about aging.

It’s reflected in the way we support people who grow older. And so. In my mind, anything that we do for older adults needs to be, first of all, with older adults, but we need to be really conscientiously thinking about how we do things differently almost all the time because we’ve had such a history of ageism and it continues to be pervasive.

And so there is a constant revision process I see both in the field of gerontology, but in reality. In how we experience aging in life. Yeah. 

Diane Hullet: That, you know, it fits in so nicely to the first blog of yours that I read. Sonia’s got a great blog, totally worth reading. And, and the first one that really caught my eye was this blog where she talked about this paradigm of the red Cape and the green Cape.

Do you want to talk about that? Cause I think really that’s what you’re on the edge of saying. 

Sonya Barsness: Yeah. So I am very much. An advocate in many different ways. And it’s interesting how you you start out kind of talking about my sort of this, I guess, integration I have of theoretical and practical. And so it’s interesting because I call myself an applied paradigm shifter.

So to that point, like, I believe that, yes, we have to think differently. There’s this kind of very theoretical aspect of this. But then we have to bring it down to reality and actually do things differently. You know, say things differently. So in all of this work, you know, there is a lot of, for lack of a better word, fighting, it sounds like in the sense of I’m fighting against these old ways of thinking or traditional ways of thinking I’m fighting against these ideas.

And so I started, I came across this idea of based in positive psychology of the idea of having a red cape or green cape, and basically the idea is that. Red cape is what you wear when you’re fighting against things, you know, so you’re fighting against injustices, you’re fighting against some type of discrimination or something that you don’t want to see.

The green cape is fighting for something. So, you’re fighting for, you know, the vision of aging that you want to see, you’re fighting for the vision of dementia that you want to see. And it’s maybe a nuance, but there is a difference, you know, between those two things. And so many times in my career, I felt like I’ve spent more time maybe in an unbalanced way of fighting against things.

And I’ve really begun to reflect on what does it look like to fight for things? You know, what does it look like to put your energy into fighting for? You know, rather than just against. And I don’t have the answers to that. I just think it’s a, it’s a really important question to ask. And, and maybe it’s not just related to my work.

It’s for all of us, you know, is how do we try to wear the green Kate more? And it’s not to be clear about like thinking positively necessarily. Like that’s not, it’s really about having a clear idea of what it is that you want to see and trying to promote that in any way possible. Well, 

Diane Hullet: like in your work with, with dementia, like the red cape, I mean, give us some examples using dementia and the field of dementia care as an example.

What are, what’s a red and what’s a green cape? 

Sonya Barsness: Yeah. So a lot of what I fought against for dementia is medicalizing over medicalizing the experience of dementia and over medicalizing people with dementia, right? So An example for me has been just a very small example is there’s a term that we use in dementia, it’s called behavioral and psychological symptoms of dementia, BPSD.

And it’s a very medical term that describes essentially the actions and feelings of a person with dementia. So a person’s angry. You know, we call that agitation. A person doesn’t really want to do something. We might call that apathy. And it becomes sort of like a clinical expression of how a person is acting.

Well, that’s one way of looking at it, you know the other way is looking at it, this is like normal human emotions. These are normal expressions of human distress. We all have them. So. The reason why I have fought against that is because when we medicalize the normal human experience of a human living with dementia, it causes us to other them.

It causes us to abnormalize everything about them. It causes us to assume that the only treatment for them is medication. And so against that has been, you know, fighting against with my red cape has been against this idea of this medicalization. So putting on a green cape, you know, would be advocating for ways to understand, you know, what a person with dementia might be saying, to encouraging us to see people with dementia as full human beings, you know, not broken.

It would be advocating for us to look inside ourselves. You know, and to think about how we can better connect with a person with cognitive challenges. So there’s like a little bit of a nuance there, and they’re both important. Also, you know, the red cape and the green cape. It’s just that if I spent all of my time, you know, just focusing on not using certain terminology or not using certain paradigms with people with dementia, what I wouldn’t be doing then is promoting what we should be doing or could be doing.

You know, to support people with dementia in a better way. I hope that it’s helpful. 

Diane Hullet: Yeah, I think it’s really helpful. I think it’s so interesting to say, like, these are the things we don’t want to have happen. But what are the things we do want to have happen? And are you working in an area where you’re connected with, you know, others who are seeing the world in the same lens?

Sonya Barsness: That’s such a great question. So I would, I would say there is a tribe of us that has been connected. Yeah. That sees things. In a similar way that often presents together, writes together, you know builds things together. It is, in my opinion, not, not the, it’s not the majority. You know, it feels like we’re still sort of a segment of the larger paradigm of dementia.

But there certainly are, you know, a good amount, a good number of us that are on this kind of I guess promoting this idea of dementia, which is. strength based you know, trying to see people with dementia as whole human beings, advocating for them as equals human rights advocates, you know, for people with dementia.

And across the world, you know, there’s many of us, including many people living with dementia, which, by the way, is important to note because In my experience, you know, working with people living with dementia and actively listening to their experiences and learning from them is what instigated, you know, my advocacy.

Diane Hullet: That makes so much sense. Is there a home that you’re able to go into? Are people Living mainly in their homes when you’re able to, you know, create this or are they living in a broader group setting 

Sonya Barsness: like, yeah, in terms of people living with dementia and people living with dementia live in many different, you know, living situations.

You know, 1 of the myths. of dementia is that most people with dementia do live in some sort of residential care community. That’s actually not true. Most people living with dementia live at home. However, it does very much depend on where you are in your experience with dementia and the types of support that you need.

But for the most part, most people living with dementia are living in the community with us. You know, which I think is even, makes it even more important that we change our perspectives about people with dementia, that we reduce the stigma of people with dementia, that we see them as our neighbors and that we truly want to find ways to build dementia inclusive communities where people can feel like that they can be their whole selves with us, not in a separate area or not treated differently.

It 

Diane Hullet: is interesting how the whole I’m going to call it able society, right? And that’s such an emphasis on cognition and mental ableness, how much we think that is everything. 

Sonya Barsness: You’re absolutely right. I, you know, it’s something that I talk with people with dementia about a lot, especially when they’re first diagnosed, perhaps, and they’re struggling with how to make sense of this.

And we talk about this idea of hypercognitive society. And that we are so focused on our cognition and especially in us society, and that we place a very high value on cognition. And as a res, that’s one of the reasons I think of why we devalue people with dementia at times is because we feel that they no longer have value because they are not able to remember things or their attention is faltering, or they’re having trouble with their language.

And. That is just simply not true in the sense of that you are not less of a person just because you have cognitive challenges. It just means that, you know, there are many other aspects of you that matter. And one of the things I like to remind people with dementia is that there’s more right with you than wrong with you.

You know, and that that’s just one aspect. You know, of your life and your living is your cognition. And yeah, it’s a big aspect and it’s extremely frustrating and it’s impactful and it’s, you know, awful in many cases for people, of course, but that if you had to reframe that of what we can do, what we can focus on as human beings, we have so many strengths and how do we tap into those?

I, I’m always fascinated by the resilience of people living with dementia and I feel like we don’t talk about that enough, frankly. 

Diane Hullet: Yeah, that’s really powerful. And, and then I also go, like, my brain goes like practical and I go, yeah, okay. And so, you know, you’re living with someone who’s got dementia and they’re unable to do more and more tasks.

You know, you’re the frog in hot water, like it’s getting harder every month and you. You do need their cognition to kick in, or you do need a support system. And that’s where I look at this silver tsunami, right? If the baby boomers aging and the, the numbers on dementia are quite staggering for what we think is coming down the pike.

And so we really need better systems and better caregiving paradigms to figure out how to manage that. I 

Sonya Barsness: think that you’re right in the sense of that the paradigm of caregiving needs a lot of support and, you know, thoughtful, like, analysis. I know that sounds so academic y, but like, we really need to rethink, I think, what it means to be to support a caregiver, first of all, and the tools that a caregiver needs.

And I think it does go back to paradigm in a way, because The experience that I have had is that and I’ll just, I kind of, it’s like a story in a way, but this is, I think the story that happens frequently with dementia is that a person with dementia, a person is diagnosed with a type of dementia and they’re, perhaps they have a family member with them pretty much from the beginning of that experience the language and the way it’s talked about is very much in an abnormal lens.

You know, so it’s very much about the deficits. It’s very much about, uh, the tragedy narrative, as we say, you know, and so the, the, the care partner, as we like to say, sometimes, you know, in lieu of a caregiver, just to denote the idea that there is a partnership. You know, and that they’re this is an important concept alone to per our discussion of like trying to reconceptualize what this means.

So the care partner here is this abnormal C kind of narrative begins to treat the person with dementia as abnormal. And so if that is. The introduction, you know, to living with this condition, certainly that is going to kind of suggest like a path, right? So you’re kind of going to be living in this abnormal land together.

And when I think you’re in that That kind of paradigm, that way of thinking, it’s going to result in lots of different things. You’re probably as a, as a person with dementia, you’re probably going to be very obviously upset, frustrated, angry, feeling dehumanized, probably at some point, I can’t do things I want to do.

You might also resist any actions around you from people to help you because you’re trying to get a sense of like autonomy control, right? So you might even be hypersensitive to that if someone tries to help you and you say, No, I don’t need that. Right? As a care partner, you might try to hold on harder to somebody because you’re scared and you don’t know what to do.

And you’re trying to help this person. And when do I jump in? And when do I not jump in? When do I when they tell this person they can’t drive anymore? When do I tell them they can’t be alone in the house anymore? And if it’s in this like lens of abnormalcy, you can see like, that’s, it’s not a healthy kind of environment for anybody.

So how do we, how do we shift that? You know, so that. There’s maybe more a spirit of partnership, of trust, of looking at each other’s strengths of, of empathy, you know, of relationship based, you know, and trying to focus less the deficits exists. Like you said, they exist. But how do we support those deficits?

You know, how do we learn skills to talk to someone with dementia that doesn’t want to do something that we think that they should do. yoU know, how do we manage these difficult situations? I think these are all the questions that we need to be asking because this is a very difficult situation. And I think unfortunately we do not really prepare either care partners or people living with dementia very well for it.

Diane Hullet: Yeah, you’ve got another great blog about what if the person who’s needing assistance doesn’t want to care partner, they say, Nope, I’m fine. No, thank you. That is not what I need. And that seems to be a real like that comes straight out of the kind of. you know, American, like I’m independent, I’m fine mentality, which really is a big, a big, big thread.

So that’s, that’s a level of trust and partnership that starts before any diagnosis of disease. Right. 

Sonya Barsness: Yeah. I mean, you know, did I, I would. I’ve come to believe that we have to bust the myth of independence way early in life, actually, that it’s not something that we should wait until someone is 80.

Right. And then say, Oh, we were never really independent. Like this is something that we really have to address. And it is, I think it’s a really, it’s a big challenge for all of us in our society as we grow older, because Independence is perceived as the gold standard for aging well, and yet it’s a myth.

And so, particularly if you start to struggle with a cognitive disability or physical disability, and you do need more assistance, it’s going to be particularly difficult for you to learn how to receive assistance, how to give, you know. I think for all of us, we struggle with all of that of reciprocity, you know, of, of, of caring for someone and honoring their choices and honoring their autonomy and offering them ways to participate in life while supporting them.

You know, these are, these are challenging things like this is not easy. And so what, you know, I begin to dream, what would it look like if we practiced these ideas of interdependence earlier in life, you know, what, what if we actually framed life more in these terms and the sense of always giving and receiving and finding opportunities to do both.

I know I’m a dreamer, but you know, I can’t help it. 

Diane Hullet: It’s good. No, I love it. I like, I can think of three friends right now who have aging parents where it’s long distance and they’re trying to kind of figure out, could there be some kind of caregiving? Might somebody come by the home and the parent is saying, Nope, don’t need it.

Don’t need it. And and so what’s what’s accurate, you know, when do we need help? When do we not need help? How do we get the help we need? And of course, even getting help is being part of a community or having privilege that allows you to pay for it. Or, you know, there’s just so many factors that go into this.

I’m struck to you. You put up a fantastic free resource recently. That’s a that’s a book, an ebook that people can download. Thank you. And it’s by Dr. Bill Thomas, it’s called aging magnificently. But what I really loved was the subtitle, which was the pursuit of strength, purpose, and belonging. And I wondered if it would be interesting for you and I to talk a little about strength, purpose, and belonging.

Sonya Barsness: I would love to. I mean, so Dr. Thomas has been such a thought leader in this space and certainly has been influential to me throughout my career. You know, I think what Dr Thomas is doing and which I, you know, also have tried to do is to sort of elevate some of these need is human needs as sort of our goals.

And, you know, I think that when we focus more on those things as sort of the way that we’re going older and the things that are important to us, regardless of. The challenges that we may face that we at least have sort of these bright stars that are guiding us, you know, and so I mean, for me, I can speak about something like purpose is something that’s very important to my work.

It’s something I talk a lot about is that I think that. And I think Bill Thomas would agree with this too, just based on all this work is that, you know, one of the challenges we experienced as we grow older is, uh, not seeking, not having opportunities for purpose, not having opportunities for belonging.

And particularly if we are in situations like residential long term care, that might be very difficult to achieve, but if we. Had more of those opportunities that in general, like, I just think that we would have such higher levels of well being as we grow older and not to say that we wouldn’t, we’d be super healthy all of a sudden, or we’d be able, you know, that we’d be running marathons as a 95 year old.

Like, that’s, you know, I think it’s just that from a well being like a very multidimensional perspective, we would just have a better experience. And I, you know, I, I think about these ideas a lot because. Yeah. People can argue like, you know, well, of course, anybody can have a sense of purpose. And that’s absolutely true.

I also think that. Society sometimes because of the way they see older people may not think of them, you know, in terms of offering opportunities for purpose, you know, so if you think of, like, your neighborhood, your community, are there opportunities for older people to be involved in a meaningful way?

You know, are people invited as they get older to the table? Are their thoughts even considered? To me, that’s about purpose and belonging as well. 

Diane Hullet: I, I love somewhere I was reading, you said, you know, we should be doing gerontology with older people. Like, hello, why am, why are you and your youth doing all this research and thinking about this?

Like, you need older people by your side saying what matters to you, what would work for you, what would help you. What do you need? And I think that tension between the generations is is really a big piece of this and an important piece of this. 

Sonya Barsness: Absolutely. And that’s another one of my kind of applied paradigm shifting is so I teach at Georgetown and Virginia Commonwealth University and I use a multi generational learning model, which basically is a, you know, academic term that means that we have older adults join our classes.

The entire time with our students and these are gerontology classes. And the reason for that is exactly what you said is that we, I don’t think that we should be teaching about aging without older adults at the table. And the experience has been profound is all I can say is that for both the older adults who participate and the students in terms of what they learn from each other.

So again, it’s the spirit of reciprocity. The model that we use is not. Based on like helping older people, it’s actually them being equal participants in our classes. So the way that things usually work is we all listen to a topic, a lecture, and then we all have a discussion together about the topic.

And that really lends to amazing perspective taking, you know, on for all ages. And I do think that that opportunity to hear these different perspectives of different ages is something that we frequently don’t get in normal life. I don’t know what your thoughts are about that, you know, Diane, but like, it’s tough, right, to find, you know, to be in multi generational environments at times.

Yeah, 

Diane Hullet: I think that’s really powerful to throw it together and say, how do we respond to these ideas? And what do we all think for the older people to hear from the younger generation and vice versa? I think is really interesting. 

Sonya Barsness: Yeah, I actually am in years ago. It just made me think of this. I had a multi generational women’s meetup.

And I mentioned this because I threw this out there to the universe is an idea that perhaps people would consider. The reason why I started it is because I also was feeling like I wasn’t having the, I guess I wasn’t having natural opportunities to interact with women of different generations. And so we started this group where different generations of women would come together and we talk about just different topics.

And so sometimes it was like more of like a book club. Sometimes it was more just a discussion group, but we had women from, I think from their twenties through, I think eighties. And it was amazing and it was just a community group, you know, so I, I guess back to, you know, what you’re saying about purpose and belonging is maybe this is just kind of my like structured kind of way of thinking about things, but sometimes you have to create the infrastructure for these things to happen.

And it’s doable. 

Diane Hullet: Right. Right. I like that. In a way, that’s kind of a simple way to say, if you’re looking for an opportunity, go create an opportunity in your community. I mean, there are ways to do that. And meetups are such a great way to do that. Well, what, you know, were there any kind of thoughts you would want to leave listeners with in terms of, I don’t know how to sort of take a bite out of this.

I mean, I suspect we’ve got everybody listening from, you know, end of life doulas, hospice care workers to you know, someone who’s got an aging dad that they’re trying to figure out how to support to someone who’s got a spouse who’s beginning to see changes. So I don’t know if there’s kind of any summation you would give or, or tips.

Sonya Barsness: Yeah, it’s such a great question. I mean, some of the words that are coming to mind are listening, you know, perspective taking, trust building. And the reason why these words are coming to mind is that I think that we could live this idea that we each have a valid perspective and how we want to live our lives, especially as you grow older and grow with dementia.

And just because we’re older or have dementia doesn’t mean that we don’t have a perspective. And I think it’s extremely important that we actively remember to seek out those perspectives of people so that we can support them together with them. And we may, we’re, many times we may have very different perspectives, right?

But it’s important that we See other people’s perspectives, you know, so, you know, the examples you’re giving of, you know, trying to support a family member do something or not do something to really actively and genuinely seek out perspectives and to try to learn from each other because One of the things about aging is that it’s not something that happens to other people.

This is a universal experience that happens to all of us. And so, you know, not only are we learning about aging from others, but we’re learning about our own experience of aging and how we want to grow older and what that means to us. And one of the ways to do that is to listen to each other and to learn from each other and then to begin to craft like what you want your experience of aging to be in the sense of.

Community and purpose and belonging and relationship and interdependence. 

Diane Hullet: Great words. Great words. I love it. Well, thank you so much, Sonia. I really appreciate your perspective and your enthusiasm for, you know, how do we do this better? And I think I would throw into the words you described, I would throw in the word conversation, right?

Like, Have these conversations, have them over and over again. I think they’re conversations that we avoid and yet they, they make such a difference for how we move forward with our parents, with our beloveds, with our children or as solo agers. And this, this I think matters and we can create some of what we hope to have, but not in silence and not in isolation.

Sonya Barsness: Absolutely. And like you said, I mean, we. Their life has changed, and so we always have to be, I think, in conversation with each other about these changes and how they’re impacting each of us and how we’re adapting to them as they move along. And it’s not a 1 and done type of conversation. Like you said, this is like a lifelong and these are often difficult, not always, you know, to conversations, but just to normalize it.

I think what you’re saying is absolutely right. Yeah. 

Diane Hullet: Yeah. Well, how can people find out more about you or follow you and your work? 

Sonya Barsness: Sure. So I, my blog is called being heard and it’s found at being heard. blog and I, I have a website it’s svcgerontology. com and yeah, I, I welcome people to follow me on social media.

I’m on Facebook. I’m on LinkedIn. I’m on X. So I’m, I’m on all the, you know, the social media and I just love hearing from people and having these conversations with people about their perspectives and what they think about all of this. And so I welcome all of you to reach out to me. 

Diane Hullet: Thank you so much, Sonya.

As always, you can find out more about the work I do at Best Life. Best death.com. Thanks for listening.

Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.

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