Faith Rockburne:              I think depression feels like a gray ooze all over your body and hanging over your mind, and it’s very difficult to get out from underneath.

Allison Sekuler:                 That’s Faith Rockburne. After years of debilitating depression, she found hope and a way forward. Her story opens today’s discussion about depression as a risk factor for dementia.

Jay Ingram:                        Welcome to Defy Dementia, the podcast for anyone who has a brain.

Allison Sekuler:                 Defy dementia is about many things like healthy aging and destigmatizing dementia, but at its heart, it is all about living in ways that reduce our risk of dementia. And that’s because dementia is not dictated by our genes.

Jay Ingram:                        Genetics can play a role, but lifestyle risk factors like an unhealthy diet, loneliness, or insufficient sleep may also have a significant impact.

Allison Sekuler:                 And the best scientific evidence tells us that if we make healthy changes to key lifestyle risk factors, we could reduce dementia cases worldwide by at least 45%.

Jay Ingram:                        Today on the show, depression. Researchers now recognize it as a key risk factor for dementia, and the good news is there are options for managing it.

Allison Sekuler:                 I’m Allison Sekuler, president and chief scientist at the Baycrest Academy for Research and Education and at the Center for Aging and Brain Health Innovation.

Jay Ingram:                        I’m Jay Ingram. I’m a science journalist. Exploring brain science has been a major focus of my career.

Allison Sekuler:                 Join us as we defy dementia because you’re never too young or too old to take care of your brain.

Jay Ingram:                        Before we begin, we have a listener advisory for you. The first interview in this episode contains a description of suicidal behavior.

Allison Sekuler:                 So if you think you might be triggered, please listen with care or perhaps consider not listening at all. And now, dealing with depression and its dementia risk.

Jay Ingram:                        When people talk about dementia, the topic of depression often comes up. That’s because many people living with dementia feel depressed, but it’s important to disentangle dementia and depression because they are, in fact, separate diseases.

Allison Sekuler:                 As we’ve mentioned many times on the podcast, dementia is a gradual reduction in cognitive ability, memory, and many other brain functions. And dementia mostly happens later in life.

Jay Ingram:                        By contrast, depression is a condition that can affect people at any age. It’s when a person experiences overwhelming sadness or hopelessness for a long time, even years, and struggles with everyday tasks. Depression can be persistent and is often very, very difficult to treat on one’s own. It usually requires treatment from a medical professional. Today on Defy Dementia, we’re focusing on the dementia that can emerge from depression.

Allison Sekuler:                 Getting out from under depression is key because it can reduce the risk of dementia.

Jay Ingram:                        There are different pathways to deal with depression, but there’s one thing that runs through all of them, hope. And our first guest embodies that hope.

Allison Sekuler:                 Faith Rockburne’s life story spans a childhood in Toronto’s affluent Rosedale neighborhood, a high-powered career in banking, and then a decade’s long struggle with treatment-resistant depression and anxiety. After multiple failed treatments, she found refuge in group therapy and later in low-dose ketamine therapy, which helped stabilize her condition. Her recovery gained momentum when she began helping others. And today, she works at St. Michael’s Hospital as a certified peer support worker, where she uses her life experience to guide patients through mental health crises. And as a former patient, she also educates staff at Toronto Center for Addiction and Mental Health. Faith Rockburne joins us from Toronto. Faith, thank you for helping us defy dementia.

Faith Rockburne:              Thanks. Great to be here.

Allison Sekuler:                 At the top of the show, we gave people a very brief description of depression, but how would you describe your experience?

Faith Rockburne:              Well, first of all, depression is all encompassing. It affects negatively body, mind, soul, and spirit. And I don’t think people understand that because the word depression is misused and overused. I think depression feels like a gray ooze all over your body and hanging over your mind, and it’s very difficult to get out from underneath. I think a lot of symptoms of depression are common to most people with depression: a lack of interest in things they previously enjoyed, a kind of fatigue that makes it hard for you to comb your hair. Fatigue is an overwhelming symptom with people. Despair and the lack of hope are the other common ones that I hear over and over. Obviously, it’s different for everybody, but I believe the symptoms are primarily the same.

Jay Ingram:                        Faith, what’s the most important thing you want everyone listening to understand about depression?

Faith Rockburne:              There’s so much misunderstanding about depression, but I think what is most important for people to understand is that depression is not a choice. It is a disease. Same as if I have diabetes or if I have cancer. These are not choices. The problem is that people can feel depressed at some point in their life,and then tend to look at it like, “Well, if I got out of it, then why can’t they?” There’s also the attitude that just think that [people with depression] just want to sit and baby themselves or feel sorry for themselves, that it’s self-pity. So buck up and pull yourself up by your bootstraps and get out of it. But that is not what depression is. Depression is a clinical disease caused by chemical imbalances in the brain. That is not something that people can snap out of. That is something that needs medical supervision and other types of therapy to live with and to thrive on.

Jay Ingram:                        Can you tell us about growing up and the roots of your experience with depression?

Faith Rockburne:              So I grew up in Rosedale and materially it was all wonderful, but I grew up in a family riddled with mental illness, though it was never discussed and certainly never treated. I was different from other children in that I felt very anxious and afraid. Sometimes for no reason, I would just all of a sudden feel sad. I had a flowered wallpaper on one of my walls as a child and I always felt very sad when I woke up looking at this wall. I thought it was the flowers because I didn’t particularly like them. I also remember things like very early self-medication, crawling up to the medicine cabinet and taking baby aspirin and cough syrup because it made me feel better. I didn’t know why. I was really young, maybe three, four years old. I was always one of those nervous, anxious children. And so I became the scapegoat of my family of four children. And, of course, I couldn’t tell anybody about [how I felt] because the kind of family that I grew up in was the kind: “There’s nothing wrong. You pull yourself up by your bootstraps and stop whining.”

Allison Sekuler:                 And when you were a teenager, were there any other signs that you were struggling with your mental health?

Faith Rockburne:              Well, of course, the teenage years were pretty hard, but the major crack in my mental illness showed when I was 16. My dad had made me change private schools and I didn’t like that. It was further and I lost all my friends. And partly as a result of that, I developed anorexia nervosa, which I think we all understand is about control. It is not about body image or calories. It’s about feeling helpless and a way of getting control back. And so I actually got down to about 80 pounds. I’m 5’6 and a half. And what was fascinating is that my parents just yelled at me. Nobody saw it as a health danger, they saw it as a behavioral issue.

Jay Ingram:                        You had anorexia then. How did you get out of it?

Faith Rockburne:              It’s a very strange thing because this is not what normally happens with people that have anorexia. One thing I do think is common is that to live that kind of lifestyle, it takes a lot of work. It also takes a lot of planning. How are you going to hide food, all that kind of thing. So there’s an awful lot of mental strain that goes into it. And I think at some point I just reached this point of sort of what am I doing? But the turning point was when I opened the fridge one night to look for my apple and my sugar-free pop. I saw that my mother had made a meatloaf, and one of the things she was really good at was meatloaf. And I was so fortunate because for most people [with anorexia], this is not what happens to them, but just in my situation, I saw it and I thought, “I can’t do this anymore and I want that meatloaf.” So I was really very fortunate. And God bless you, Mom, for your meatloaf. I was able to get back on track and start eating again. I was very, very fortunate. Most are not that fortunate. And then I decided that one of the things that made me feel good about myself was going into nursing. So I went into nursing. Because of the surplus of nurses, I ended up going into insurance, and then I ended up going into banking and insurance as a junior executive at one of the large big five Canadian banks.

Jay Ingram:                        So on the surface, you’re very successful, but what did it feel like to you?

Faith Rockburne:              I felt at first as if I was really in a good place because the analytical part of the work really suited me. It took a while for the pressure of it to wear on me. And the fact that there was a lot of chauvinism still. People who are in banks are very, very ambitious and if they sense any kind of weakness in you, then they will take advantage of [it]. I think I was very good at what I did for a long time, but it started to become a strain on me and I found it hard to deal with emotionally [because]  you could be backstabbed, or you weren’t invited someplace. So I think at first it was great because it did suit my skillset, but then it wasn’t good for my mental health.

Allison Sekuler:                 What happened next? Can you tell us about how your career in banking came to an end?

Faith Rockburne:              So what happened was that within the space of less than three years, my mother, my father, and my best friend all died. I didn’t really know how to ask for support, I just kept stuffing everything down. And that’s a very common thing, especially in an environment like a bank. But then at some point when you keep stuffing it down, nature will take over. And one day I just couldn’t get out of bed and I had a nervous breakdown. Very shortly after that, I was diagnosed with major depression and anxiety. So you can think that you can keep going, and you can think that you don’t need to get support or any [help], but the body will take over at some point and go, “That’s enough. You can’t do this anymore.” And so that was the end of my banking career.

Jay Ingram:                        That was obviously a critical point in your life. What happened to you immediately after?

Faith Rockburne:              It was really terrible. I have to say that because I’d never really fully been treated for mental illness, I never realized the stigma that came with mental illness. I worked in a relatively small department, about 80 people, and I knew all of them. Some of them had been to my house for dinner, many to my wedding. And the hardest part, when I look back on it now, and very painful obviously at the time, was that most of the people just dropped [me] like a hot potato. Similarly, with personal friends outside the bank. I was heartbroken by the fact that I’d been there for many people and then when I needed people, so many people disappeared. And so I was really left in a bad place, and shortly thereafter, they found my depression and anxiety to be treatment-resistant. Then I couldn’t even start to feel better by taking an antidepressant, and that led into four years of being tried on every antidepressant, then ECT, which was a failure, and finally, much later on into a ketamine treatment, which is why I’m able to work today and be here talking to you today because of that. But it was essentially 10 years where I could not get treatment. I was terrified to leave the house. That was the lost 10 years, I call it.

Allison Sekuler:                 So you mentioned ECT, that’s short for electroconvulsive therapy?

Faith Rockburne:              Yes. The ECT didn’t help me at all, except I lost my short-term memory, which is a risk of it, and it left me with my depression. I honestly don’t know now how I made it through all that time without receiving really any treatment and being so isolated. I put it down to [the fact] that I just am a very stubborn, hardheaded person. I think there was always something in me that felt that there was more, despite myself, and even though I laughed at the word hope, and I hated the word hope. But, I think in spite of that, deep inside of me, was still the hope that one day I would be able to do something again and do something useful.
To be very frank, I made many suicide attempts during that 10 years. And I think what happened to me was I thought, “You’ve tried so hard not to be here, but you are still here. So what are you going to do for the rest of whatever your life is? Despite your strong wish not to be here, you are still here, so you’re going to have to do something with that.”
My biggest turnaround, other than the fact that I did get ketamine treatment, [was joining a therapy group]. Treatment for depression is not all about drugs. Patients have to be willing to change, be willing to step out of their comfort zone. So my first step was that after years of resisting it, I joined a small therapy group, and that was my biggest breakthrough. I can’t stress [it] enough to anybody listening who’s looking for ways to help themselves and feel better. There’s nothing like being with other people who understand you and can understand what the mental illness is. It also helps you to understand sometimes how fortunate you are because other people are worse off in some way but you are at home not realizing that. This, for some reason, immediately catapulted me into this passion to get out, that I really wanted more of life and to see more people and do more things.

Jay Ingram:                        So the group aspect obviously has been very important. You also did mention ketamine. Did that play an important role too?

Faith Rockburne:              Huge. With the symptoms of depression that I have, I have major depression disorder, there’s no way I could be talking to you and doing two types of employment. One of the hard things about mental illness is, it’s very hard to find people that will help you when you are not fitting the mold of, “Yes, I can take antidepressants.” So I was very lucky that, and get this through my own efforts, not through any doctors. I found a clinic at Toronto Western that specialized in treatment-resistant depression. So that I am so grateful for and I take a small dose of ketamine twice a week.

Allison Sekuler:                 Under doctor’s supervision.

Faith Rockburne:              Under doctor’s supervision. Yes, exactly. I know there’s a lot of suspicion about ketamine, but there are so many patients that are helped by ketamine. I do want to stress that, as important as medication is, there has to be so much from the patient, from the person with the mental illness. They have to want to change, they have to want to push themselves. It is uncomfortable, but the discomfort is short and it can lead to a [new life], and open the door to opportunities as it did with me.

Jay Ingram:                        Would you say you’re well now? Would you ever say the word cured?

Faith Rockburne:              You’re never cured [from] mental illness. Mental illness is forever, which is unfortunate. But I’ve learned to live with mental illness and I’ve learned when I’m not well, which I think is the primary thing that people with mental illness need to know about themselves. It’s like living with any chronic disease where it’s part of your life, it’s something that you deal with. In a weird way, I’m also kind of grateful to mental illness because it has given me the opportunity to change some things about myself that weren’t all that cool before I was diagnosed. I was a bit entitled, I was a bit selfish, so it kind of stripped me back to my basics. And I realized that I went into nursing because I wanted to help people, I still want to help people, and that’s my best therapy as well.

Allison Sekuler:                 This episode is focused on how depression is a dementia risk. Does that risk weigh on you at all now?

Faith Rockburne:              I think that depression has a lot of impact on the body. Nobody can go through this kind of illness without it being wearing. For example, I have heart disease, which is probably partially caused by depression. I don’t think people should live in fear, but people should do what they can, given their situation, to make sure that they’re noticing change, which I think is one of the biggest things. Negative change is what we really don’t want to deal with. I think that anyone with a chronic disease, including mental illness, has to be aware of their health and check often.

Allison Sekuler:                 Thank you, Faith. It’s been so wonderful speaking to you.

Jay Ingram:                        Yes, thank you.

Faith Rockburne:              You’re very welcome. And thank you for this opportunity.

Allison Sekuler:                 Faith Rockburne is a certified peer support worker in the mental health inpatient unit at St. Michael’s Hospital in Toronto. She joined us from Toronto. Our next guest has been listening to Faith Rockburne. Dr. Zahinoor Ismail is an expert in how conditions such as depression can shape dementia risk. He’s a professor of psychiatry, neurology, epidemiology, pathology, and laboratory medicine at the Hotchkiss Brain Institute and O’Brien Institute for Public Health at the University of Calgary. As a physician, he works directly with people living with depression and dementia, and one of his current projects is CAN-PROTECT, which is an online study of brain aging that Canadians of all ages can join. Zahinoor Ismail joins us from Calgary. Dr. Ismail, thank you for helping us defy dementia.

Zahinoor Ismail:               It’s my pleasure.

Allison Sekuler:                 So Zahinoor, what struck you about Faith’s story?

Zahinoor Ismail:               Faith’s story was really remarkable and what struck me the most was the early age of onset and awareness of it. The notion that there was something wrong for which she self-medicated with aspirin or cough medicine, and that to me was remarkable that she was aware, but also the sadness of that.

Jay Ingram:                        Was there anything about her story of her early depression that would give you clues as to how depression develops in the first place?

Zahinoor Ismail:               The fact that it had such an early age of onset, and in the context of a family history really spoke to the biological mechanisms of depression in her case. We know depression is different in every person. The type that she has is one that really was wired, I think, likely exacerbated by environment, because it’s neither one nor the other in exclusion.  I think one’s nature, one’s genes, define a spectrum in which you reside, and thereafter, the environment kind of places you within that spectrum. And for her, it seems like her genetic risk really placed her in a fairly restricted range that likely she would’ve become depressed no matter what.

Jay Ingram:                        Is it known, what does depression actually do to increase dementia risk?

Zahinoor Ismail:               There are multiple kinds of postulated mechanisms. First of all, there appears to be a dose effect. So the more depressive episodes someone has, the higher the risk, [and it is] exacerbated by undertreatment or lack of treatment, because there is data to show that the duration of untreated depression is associated with poor depression outcomes over time, which then in turn can also link to greater risk. In the context of depression, you have a lot of dysregulation of internal hormone and brain circuitry, and you get a kind of cumulative wear and tear on the brain, something that they call an allostatic load. This is from chronic stress and inefficient management of physiological systems, like for example, the hypothalamic-pituitary axis. What happens is that you get an acceleration of biological aging, something called inflammaging, which is an age related inflammation, but hastened in those who have depression. You can get chronic cortisol or stress hormone increases. Not only does that link to smaller hippocampal volumes, which are the memory centers, but [it is] also [linked] with more inflammation and with vascular damage. You can also get less production of your brain fertilizer, a chemical called BDNF, [which] then can impair your brain healing. At a biological level, [this] results in a less resilient brain to biological stressors. And there’s the psychological and cognitive component as well. In the context of depression, people can be less social. Perhaps they may not go as far in school. They can be less cognitively engaged and that can result in less cognitive reserve. That cognitive reserve is something that allows you to be resilient in face of a degenerating brain. There are multiple different mechanisms that I tried to summarize there.

Allison Sekuler:                 So just to be clear, on Defy Dementia, we’ve talked a lot about how different kinds of risk factors like poor nutrition and not getting enough exercise, not getting the right kind of sleep, can work together to increase dementia risk. And so it sounds like what you’re saying is that there’s some sort of interaction between depression and those risk factors.

Zahinoor Ismail:               Absolutely. It’s generally not one risk factor alone, but a constellation of factors, which is probably why we see this dose effect of more severe, untreated and number of episodes.

Jay Ingram:                        Where do we stand with respect to treatment for depression, the major treatments and how effective they are?

Zahinoor Ismail:               When we treat depression, we always take a biopsychosocial approach. We look at the biological mechanisms and also the surrounding environment. Nature and nurture. When we put it all together, the evidence [shows] that the best outcomes are when medication is combined with psychotherapy or talk therapy. And in the same way that we want evidence-based pharmacotherapy, [that is a] medication that has shown trial evidence to improve depression in the population in which we are administering it, we also want evidence-based psychotherapy. And this is where sometimes we can go astray. I talked about the duration of untreated depression as a contributor to poorer outcomes. If someone decides that they want to wait [to start the] medication and first start with therapy alone, which is perfectly reasonable, it’s got to be [a therapy] that has shown evidence to improve depressive symptoms. For example, supportive counseling, which people find helpful, [where] you may speak to someone and they’ll be a sounding board for you to either vent or discuss things. That’s helpful in the immediate, but there aren’t data to show that over the long term that improves depressive symptoms [or] depression as a syndrome overall.    It’s really important that we use the best evidence we have for medication, pharmacotherapy, neurostimulation, et cetera, [but also] for psychotherapies, talk therapies, et cetera. Combining the two as promptly as possible provides the best outcomes over time. Delays [in treatment] is something that’s really understudied. I reviewed all of this literature and there may be 11 studies in total and it shows that delays in getting treatment are associated with poor responses over time. So it’s important that people get assessed, get diagnosed and get treatment, whether it be medication or psychotherapy, but get treatment right away.

Allison Sekuler:                 So Zahinoor in your own research, how are you investigating depression as a risk factor for dementia and what have you found so far?

Zahinoor Ismail:               One of the ways we’re studying it is through a Canada wide online platform called CAN-PROTECT. It’s a study available to all Canadians, 18 and over that looks at risk and resilience in brain aging. As part of that, we do annual cognitive testing as one of our markers, but we [also] ask a number of questions on mood and depression symptoms. So far, we’ve found that, for example, adverse childhood experiences early on are associated with a higher dementia risk score later on, including and especially the mood anxiety component. Similarly, we measure cognitive reserve, which as I mentioned earlier is a way of building backup in your brain to give you some resilience in the face of a shrinking or degenerating brain. What we found was, first of all, that our measure of cognitive reserve predicts a better cognitive score, but it also predicts a better behavioral score. So fewer behavioral symptoms, fewer mood and anxiety symptoms as a result of better brain backup systems. The goal is really to predict what confers resilience. Such that we can bottle that in a way or promote it and say, “These are the things people who are resilient do.” And then we can identify those that are associated with risk as high needs areas for targeted intervention for education in order to ideally prevent, mitigate or delay the emergence of dementia syndrome and the changes that go along with it.

Allison Sekuler:                 For those in the audience who are experiencing depression themselves or for their friends and their family, what do you think is the most important thing that they need to know?

Zahinoor Ismail:               The most important thing to know for persons who are suffering from depression or their friends and families is that despite the great degrees of shame and stigmatization [associated with] depression, it is a treatable condition, but the longer they wait, the harder it gets to treat. So one wants to be encouraging, supportive, but prompt. As per Faith, some people might underappreciate its severity or think that you can shake it off or just pull yourself up by your bootstraps. While those are important notions in terms of resilience overall, in the face of a major depressive episode, it’s just very, very hard to do. And so people need professional support and they need it quickly because irrespective of whether it’s an evidence-based pharmacotherapy, an evidence-based psychotherapy, what’s really important is that the delay to treatment is as short as possible. So encouragement from everyone involved to really get engaged in treatment and get the best treatment possible.

Jay Ingram:                        And if a person is able, like Faith Rockburne, to manage their depression, how forgiving is the brain?

Zahinoor Ismail:               So the brain is remarkably forgiving up to a certain degree, and then it’s no longer forgiving. And again, Faith’s case is unique because of that early age of onset and her trajectory, but nonetheless, she seems to have really rebounded with ketamine treatment and therapies. I think that’s a testament to the brain’s resilience. But does [someone with depression] develop a less resilient brain, both cognitively and in terms of structure and function? We don’t know that yet, and that’s [what matters with] the aging process.

Allison Sekuler:                 Zahinoor, thanks so much for joining us today.

Jay Ingram:                        Yes, thank you.

Zahinoor Ismail:               My absolute pleasure. Thank you for having me, and I hope that it’s been helpful to your audience.

Allison Sekuler:                 Dr. Zahinoor Ismail is a professor of psychiatry, neurology, epidemiology, pathology, and laboratory medicine at the University of Calgary. He joined us from Calgary. If you would like to take part in the CAN-PROTECT study, you can find information at www.can-protect.ca, and we’ll also have a link to that on our website. So Jay, amazing guests and discussions. What did you think?

Jay Ingram:                        The thing, Allison, for me, is that as we say at the beginning of the episode, I’ve been interested in the brain for a long time and I’ve always been fascinated with exactly how things work, the details of molecular chemistry, biochemistry in the brain and how things connect. But in this case, when we’re talking about the higher risk of dementia if you have depression, it’s really interesting because the exact mechanism, how depression raises your risk isn’t exactly clear. There are a number of alternatives, but the recommended action is clear. Act quickly, act as soon as you can, and do the things like psychotherapy and appropriate medication that will forestall or even bring a depressive episode to an end. So here we have a case where we don’t really exactly know how the two things link, but we know what we should do and I think that’s a really important lesson. What struck you about all this?

Allison Sekuler:                 Following on what you were saying, I think it may not be that there’s one answer about how depression works in the brain. It could be different for different people, and that might be why depression kind of looks different in different people. The path might be different for each individual. If you think about Faith’s Story, it was really interesting because her depression was what we call treatment-resistant. She needed to take one kind of path to be able to deal with it and other people might take a different path. So we heard, for example, the importance of a combination therapy, where maybe it’s a combination of different kinds of drugs and different kinds of behavioral therapies. One-on-one sessions with clinicians might be more important for some. I think that it’s just not going to be the same for everyone, but again, to your point, getting it treated as early as possible is what is most critical, however that treatment looks.

Jay Ingram:                        And there is one other point, and that is that regardless of what you know about the mechanism of depression, it is so important to have hope because hope is justified and hope is also critical to being able to end depression.

Allison Sekuler:                 To find out more about how you can boost your brain health and reduce risk of dementia or slow its progression, please visit us at defydementia.org. There you can check out other episodes of this podcast, as well as our videos, infographics, and other resources.

Jay Ingram:                        Our podcast production team is Rosanne Aleong and Sylvain Dubroqua. Production is by Podtech, music by Steve Dodd. Our cover art is by Amanda Forbis and Wendy Tilby. Our writer and chase producer is Ben Schaub.

Allison Sekuler:                 And for all their help and advice on this episode, we’d also like to thank the Toronto Dementia Research Alliance and Melissa Hebert, who is an engagement coordinator at the Center for Addiction and Mental Health.

Jay Ingram:                        We’d also like to thank the funders of this podcast, the Slaight Family Foundation, the Center for Aging and Brain Health Innovation and Baycrest. We’re also very grateful for your support too. So please click that subscribe button for Defy Dementia wherever you get your podcasts and don’t forget to leave a like, a comment or maybe even a five-star review.

Allison Sekuler:                 Next time on the show, Dementia 101, an essential guide to the major types of dementia and how each of them affects the brain differently resulting in specific symptoms and behaviors.

Jay Ingram:                        From Alzheimer’s disease to Lewy body dementia to frontotemporal dementia, we’re going to dig into their differences and similarities and also talk about what it’s like for people and their loved ones when their doctors are trying to figure out which dementia it is that might be affecting them. That’s next time on Defy Dementia. I’m Jay Ingram.

Allison Sekuler:                 And I’m Alison Sekuler. Thank you for listening to Defy Dementia. And don’t ever forget you’re never too young or too old to take care of your brain.