Transcript for Episode 39: Indigenous Peoples and Dementia

NASW Social Work Talks Podcast

Aliah Wright:
This is NASW Social Work Talks. I'm your host, Aliah Wright. 47 million people worldwide are living with dementia. The World Health Organization estimates that, by 2030, that number will increase to 75 million people. In most countries, there is a lack of awareness and understanding of dementia. That can result in stigmatization, which is a barrier to diagnosis and care.

But it can be worse for indigenous populations who are not just concerned with caring for loved ones, but with preserving their heritage among the keepers of knowledge, including those who are losing their memories. Today, we're speaking with Dr. Jean Balestrery.

She is a licensed independent practitioner who holds an MSW and a PhD in social work and anthropology. Dr. Balestrery conducts research in health and aging, and is one of the editors of the new book, "Indigenous Peoples and Dementia: New Understandings of Memory Loss and Care."

Jean Balestrery:
"We Call it Healing": There was a young boy, there was a young boy standing at a window in a classroom, crying his heart out because mom and dad had left him there. He wondered why mom and dad were doing this. Fear overtook him, and he looked up and seen one of these men in black robes.

Then he said, "Who are these people? What am I doing here? Why can't I be with my mom and dad and grandma and grandpa? I miss my dog. We used to go and run and play. My dog, Lexi, would run and catch the pheasants that dad shot down with his shotgun. Now this is all gone, including hunting and fishing with my dad. Fishing was my favorite. Oh, what will happen to me? I'm like a wolf with nobody with me, all separate from my pack."

The next day, he got up from the strange bed with all kinds of young boys sleeping around him. I've seen so many sad faces. Some of the older boys were talking. "Ha, ha, ha,"' they laughed. "You got to get your haircut." I absolutely froze and said, "Nobody's going to cut my long hair." In the Indian school, I also got kicked, slapped, and punched for speaking my language.

I grew up ashamed to be an Indian. Years later, as I got older and bigger, I tried to run away from the school. They would catch me and bring me back, and would I ever get a strapping. Finally, I left that place a few years later and I went to the white man's school where it was very common to be called a half-breed bastard by my teacher and some of the other students.

They used to say, "Sticks and stones will break my bones, but names will never hurt me," but that's crap. The names did hurt us. I got to admit one thing about the Indian school, though. It was very painful, but they taught me how to read and write, but I wouldn't recommend anyone bring their kids there. Now that I'm an elder, I've been asked to tell my story so as to help with the care of elders and senior citizens homes.

Going to the Indian residential school, other than learning how to read and write, has been a very negative contribution to my health and well-being. One thing that I'm concerned about, if I ever go into a care home, is that they, the nurses and the doctors, will force me to give up my traditional ways that are so dear and close to me.

Aliah Wright:
You've just heard Dr. Jean Balestrery reading an excerpt called, "We Call it Healing," from her book, "Indigenous Peoples and Dementia: New Understandings of Memory Loss and Memory Care." Thank you so much for joining us, doctor.

Jean Balestrery:
Sure. It's wonderful to be here.

Aliah Wright:
What drew you to this work?

Jean Balestrery:
I've been a social worker for many years, and truth be told, I actually fell into the work. I fell into the profession. So, when I graduated from undergraduate studies at Brown University on the East coast, I [inaudible] with a friend across the country, landed in Seattle, started working in film, and then actually pursued a counselor position at a residential treatment center.

And that was the beginning of my lengthy career in social work. I loved the work, and as I reflect back on that time, the work grabbed my heart. So during those early years in my career, I actually visited friends in Alaska. I fell in love with the beauty of the land, the sense of space being so embedded in the outdoors.

Everywhere I went, nature was right outside my front door. So that was something I had not ever experienced. And then I had seen a position through the National Association of Social Workers advertised. It was for an itinerant clinician in rural Alaska. Well, I pursued it soon after. I actually ended up in rural Alaska for my epic adventure in life.

So I was in Nome, Alaska. I was a licensed independent clinical social worker living and working in the Bering Strait region. I was based out of the hub city, Nome, Alaska, but traveled and worked in the surrounding remote Alaska native villages.

Often, we think of our most challenging experiences as also the most rewarding. And I would say for me, this was that time. So I was there for three years, befriended many indigenous people, the Alaskan native peoples, and was actually encouraged to pursue my PhD, and I did, at University of Michigan, in anthropology and social work.

And my goal was really to conduct health research to improve health outcomes among indigenous peoples and other marginalized groups. And as I journeyed with Alaska natives who served as co-researchers in my dissertation research, one of the elders and myself, we actually coauthored a book chapter in this book, and it's about our experience collaborating with each other, and it's one of the three teaching stories in this book, which is actually a feature, a unique feature of our co-edited book.

I think what got me into the work, in terms of health research and pursuing advocacy with indigenous peoples, is understanding both from lived experience as a social worker and then as the social work researcher, actually an interdisciplinary researcher working with indigenous peoples, there is a real cultural disjuncture between our mainstream Euro American education and training and indigenous knowledge in ways of being. There's a very big cultural disconnect.

Aliah Wright:
When you talk about indigenous peoples, who are you discussing specifically?

Jean Balestrery:
Indigenous peoples refers to the original peoples or first peoples of a particular place or territory. And it also includes the people whose ancestors originally inhabited the territory. So in the book, there's a range of terminology to refer to indigenous peoples, and it can vary from first nations, Aboriginal, indigenous, Indian, native and native American, and Alaskan native.

So the appropriate language varies across countries. Common practice is that first peoples from the particular place or territory identify their preference for how to be referenced.

Aliah Wright:
So what should social workers know about indigenous peoples and dementia?

Jean Balestrery:
First, I think it's important for social workers to understand that there is no single cause of memory loss or dementia, and that there are both modifiable and non-modifiable risk factors. Modifiable factors relate to external causes, such as lifestyle, place of residence, income, whereas non-modifiable risk factors cannot be altered, and include genetic and or hereditary traits.

It's worth noting that indigenous peoples are often an oppressed group in society, and as such, modifiable risk factors associated with social determinants of health are large obstacles, and they present as barriers to health equity. And they present as access to care, barriers, and serve as systems for indigenous peoples. Hereditary factors are less common among indigenous peoples as it pertains to dementia.

So working with a holistic lens and providing care services is most helpful. Secondly, it's important to understand that all care services are embedded within a cultural paradigm. So understanding that mainstream biomedical approaches are actually a cultural paradigm in and of themselves. And there are vast differences among cultural groups as to what constitutes healing for a particular condition.

Thirdly, and last, I think it's important for social workers to understand the connection between social support as a protective factor when it comes to memory loss and dementia. So for example, last year, 2018, researchers at Florida State University college of medicine found in a study that loneliness is associated with a 40 percent increase in a person's risk of dementia. So this study examined data on more than 12,000 U.S. adults 50 years and older, and this was conducted over 10 years.

Aliah Wright:
Dr. Balestrery, your research found that mainstream approaches and interventions are not necessarily appropriate for indigenous peoples. Why is that?

Jean Balestrery:
Let's begin by defining dementia. It's an organic brain disease, which is the umbrella term for various forms of cognitive impairment. This affects mostly older adults. And the primary symptoms include memory loss, word finding difficulties, disorientation, and impaired judgment. However, for many people, the word dementia itself may be avoided, particularly when working with diverse cultural communities for whom the word holds no meaning.

Some languages do not even have the word dementia, or the association with dementia is a negative association. So in this book, it's explained that memory loss and memory care are the terms recommended by indigenous elders in Canada, because the word dementia does not exist in their language, and it does carry a negative connotation, which has been found with other populations who speak languages other than English, and also who have belief systems different from Anglo European peoples.

So the diagnosis of dementia, which is conducted by a physician or psychiatrist in a doctor's office or a memory clinic, involves the mini-mental status exam. However, this exam has been criticized, or critiqued, rather, for being culturally relative. So not a reliable cross-cultural assessment tool.

So there are researchers and clinicians advocating for what's called culture fair tools that can provide more accurate diagnoses of cognitive impairment. So for indigenous peoples, for instance, this would include the Kimberley indigenous cognitive assessment, KICA for short, developed for use in the Kimberley and Northern territories of Australia.

There's the grasshoppers and geese text for Cree people in Saskatchewan, Canada, and then there's the Canadian indigenous cognitive assessment. That's an adaptation of KICA by the Ontario researchers. So, a key feature of these new screening protocols and assessment tools is incorporating visual images that are reflective of the culture and territory of the person being assessed.

Aliah Wright:
So you're using the tools that they're familiar with to help them assess memory loss.

Jean Balestrery:
Yes, these tools are culturally relevant, and they, in such a way that they are place based. They are contextualized to a particular place and territory.

Aliah Wright:
Listeners, we'll be right back.

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Aliah Wright:
And we're back. So there are three teaching stories in the book, and you read from the first one, titled, "We Call it Healing." Tell us about the other two, "Coyote, Keeper of Memories," and "[inaudible 00:13:25] Frontier." I don't know if I'm pronouncing that right. What cultures are they from and why are they important?

Jean Balestrery:
This book is unique in featuring these teaching stories. There can be many interpretations of what traditional stories mean, and it's up to each listener to make sense of what it means to them. These stories exemplify how sharing from personal experience, sharing to convey traditional values for living, and sharing when working together or collaborating, it all involves deep listening.

So "We Call it Healing" is a teaching story by a first nations elder in British Columbia, Canada, and colleagues. And it's based on a personal story. So while this elder's personal story is imbued with teachings of healing for others, it's also, in and of itself, healing for the elder to share. So an important message here is quote, "The past carries forward into the future," end quote.

The elder goes on, quote, "If the emotional bruises are healed through sweats, smudging, love, and the creator, then the dementia can be healed, or the impact of living with it lessens." End quote. Next, in "Coyote, Keeper of Memories," Wilson and colleagues show how storytelling is medicine among indigenous peoples.

So in this story, Coyote represents both sage and trickster, and is a ubiquitous medium in many indigenous stories, and the focal point for teaching lessons and principles to the next generations, and teaching values. So the indigenous elders in Canada conveyed through Coyote sacred teachings and lessons that they wished to pass along, that memories hold deep significance among indigenous peoples and is a central part of traditional knowledge.

Aliah Wright:
Is that why you included these stories in the book?

Jean Balestrery:
I will thank my lead co-editors, Dr. Wendy Hoco, and then Danielle Wilson, for selecting the first two teaching stories. The third teaching story is a contribution I offered, and it's a co-authored chapter that charts the collaborative journey I have had with an Alaska native and [UPF 00:16:02] elder, Ms. Sophie [inaudible 00:16:07], and that is [inaudible 00:16:09] Frontier, we listen, in between talk, we listen.

And in that story, we contribute our shared personal experience of collaborating across multiple lines of difference, and yet how we grow through the relational messiness, at times, but connection, or commitment to stay connected, how we grow to really care deeply for one another. And it's a story that emphasizes the process of continual co-learning, and we reveal tensions in our collaborative process, but we also show how these tensions can be transformed into productive possibilities for the greater good.

Aliah Wright:
Can you read a little more and tell us why it's relevant?

Jean Balestrery:
Sure. "As Jean and Sophie listen in between talks, each learns more about the other's lived experience. As each learns more about the other's lived experience, the heart strengthens. As the heart strengthens, mutual acknowledgement deepens.

Linda Smith, 2008, states, 'I would emphasize the importance of retaining the connections between the Academy of Researchers, the diverse indigenous communities, and the larger political struggle of de-colonization, because the disconnection of that relationship reinforces the colonial approach to education as divisive and destructive. This is not to suggest that such a relationship is, has been, or ever will be harmonious and idyllic. Rather, it suggests that the connections for all their turbulence offers the best possibility for a transformative agenda.'"

That is from the co-authored chapter that I contributed with an Alaska native and UPF elder, Ms. Sophie [inaudible 00:18:05], originally from Cape Prince of Wales, in rural, remote Alaska. We collaborated over many, many years, more than 10 years together, in social work practice and research. And our story is a conversation over many, many, many years, and we imbed various points made by researchers and scholars.

"I travel with Sophie to her home village, and I say, "I love your village, Sophie." "Why is that?" Sophie says. "Well, first, because it's your village, and I love visiting your relatives. But I also think it's the most beautiful village. I love Razorback Mountain, and I love the freedom I feel there. It's the farthest point West in the United States, so we are literally at the edge of the country." I laugh, I laugh too. I adore Sophie's laughter. It's infectious. When she laughs, the whole world around her laughs. It's true."

And here's an excerpt where we add some literature. "Sophie shared with Jean about her deep connection to the land, describing it as cultural. Quote, 'My people are of the earth,' and Keith Basso, in the indigenous literature, talks about the deep connection between indigenous peoples and land.

"What do people make of places? The question is as old as people in places themselves, as old as human attachments to portions of the earth, as old, perhaps, as the idea of home, or our territory, as opposed to their territory, of entire regions and local landscapes, where groups of men and women have invested themselves, their thoughts, their values, their collective sensibilities, into which they feel they belong. The question is as old as a strong sense of place, and the answer, if there is one, is every bit as complex."

Aliah Wright:
Wonderful. Now, the book discusses how indigenous people cope with losing not just their memories, but their way of life, which helps shape who they are as a people. How does memory loss relate to indigenous knowledge systems?

Jean Balestrery:
It's really important to emphasize mainstream approaches as dominant, right? So if we look at our co-edited volume on indigenous peoples and dementia, what we're really doing is adding to what we already know. So if you look at the dominant paradigm as reflective of a biomedical approach, or biomedicine, which is illness-based and disease-based, what our book is doing is expanding beyond biomedicine.

So while in dementia care, person-centered care, as an approach, it's considered the gold standard by the institutes of medicine. However, its Eurocentric construct doesn't align well with indigenous approaches to elder care. So person-centered approaches reify the individual and individuality. And in that sense, it's a cultural paradigm.

So individuality stands in sharp contrast to the indigenous values and principles of relationality and interconnectedness. So our book emphasizes relationship-centered care and other more recent approaches to dementia care, which include family and community involvement, and it expands beyond person-centered care.

And also, with indigenous peoples, there is a medicine wheel, as a cultural paradigm, literally in the shape of a wheel or a circle. There's a cultural value for the circle of life, and seeing things holistically, as all connected. Disease and illness are viewed not just in terms of physical health, but emotional, spiritual, mental. It's all connected.

So there isn't one domain of one's whole person that is prioritized, whereas biomedicine prioritizes physical as a domain. Core concepts are shared among indigenous peoples, even though there are many diverse tribal communities with distinct cultural and language and traditional practices. So that said, the common shared values include a sense of wholeness, balance, relationships, harmony, growth and healing.

And it's firmly grounded in a particular place. So there is a deep connection to land and place, and that is integral to an indigenous worldview, and that extends beyond biomedicine. So the book is really about proposing more of a both and paradigm of dementia care.

Aliah Wright:
Now, let's talk effective treatment. Will it differ for these populations than it will for others?

Jean Balestrery:
In many ways, yes. Effective treatment for indigenous population is culturally safe care. Culturally safe care refers to power imbalances that are inherent in those relationships between service providers and service users. It shifts that power towards those receiving care.

So this concept of cultural safety, it was first developed by a Maori nurse, and it's informing the field of nursing across Canada and elsewhere, particularly among indigenous peoples. And it's been adopted by many allied health professions, including social work. And it's recognizing that safety is a process, and an outcome of giving and receiving care, as well as in collaborative research.

It's also viewed along a continuum, and it advances what is a ubiquitous construct, and that is cultural competency. So cultural competency, if we think of language as a vector of power, cultural competency, literally, it's referencing the service provider. And if we look at cultural safety, it places power and the determination of what is safe care in the hands of the service user, the recipients receiving care, those with whom we, as social workers, are partnering to improve quality of life.

Culturally safe care is determined by those partners, by those recipients of care. So that's a key distinction, and I think really, really important. It is an approach that advances cultural competency and all those principles. In essence, culturally safe care reflects a decolonizing approach. And there's a scholar that talks about the colonization as literally the repatriation of indigenous land and life.

It's not a metaphor, it's literally the repatriation of indigenous land and life. The colonization is best achieved working in collaboration. It also means that descendants of what we call white settlers, they're integral to this process, and the goal of self-determination among indigenous peoples.

Settlers are diverse. I want to just add that. They're not just of white European descent, but settlers include people of color, and even from other colonial contexts. So decolonization means really dismantling structures that are put in place to control and oppress indigenous peoples. Non-indigenous allies are integral to this process.

Aliah Wright:
What's the one thing you would like people to understand?

Jean Balestrery:
The United Nations, they have a declaration on the rights of indigenous peoples. It's a living document that identifies and outlines indigenous people's rights to health and cultural traditions, and actually states a quote, "Indigenous individuals have an equal right to the enjoyment of the highest attainable standard of physical and mental health."

This whole declaration, it's a product of more than 30 years. It's an international human rights framework and includes among its aims the elimination of health disparities among indigenous peoples globally. And our book engages with the global indigenous movement as we examine emerging research methodologies and practices in this area of indigenous peoples and dementia.

Our book is situated at the confluence of current forces in our global society. So we have an increasing older population, we have an increasingly culturally diverse population, and all of this is happening in context of persistent social and health disparities among diverse cultural groups, including indigenous peoples.

And as the number of people with memory loss and dementia grows, we're all impacted. Here in the United States alone, one in three elderly people die from these diseases, and in 2018, the cost to the country was $288 billion. We all need to learn as much as we can about this issue to help in the healing process, because it's having widespread impact with real human costs as well as economic costs.

Aliah Wright:
Wow. Thank you so much for taking the time out to speak with us. We really do appreciate it.

Jean Balestrery:
Well, thank you. I really have appreciated the opportunity to be here, and I'd like to thank my lead co-editors, Dr. Wendy Hoco and Danielle Wilson. And it's been an honor to work with all of the contributing authors, and hopefully, it will really make a real impact with real people in real places. Thank you.

Aliah Wright:
And thank you listeners. Once again, the name of the book is Indigenous Peoples and Dementia: New Understandings of Memory Loss and Memory Care, published by UBC Press. We'll provide links to the book and the other resources in our show notes. And if you liked this episode, please be sure to leave us a review on iTunes.

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