The Agenda with Steve Paikin (Audio) - Why Is It So Hard to Diagnose Dementia?

Episode Date: January 31, 2025

Receiving a diagnosis of dementia requires a series of tests and a deep understanding of cognitive function. It also requires someone who can recognize the early signs. In short, the wait time for a dementia diagnosis is long. January is Alzheimer's Awareness Month, and to get a better understanding of the disease and the impact dementia has on the lives of the 750,000 Canadians living with it, Saskia Sivananthan, data scientist and neuroscientist specializing in dementia, former Chief Research Officer of the Alzheimer Society of Canada and founder and CEO of The Brainwell Institute joins Steve Paikin to discuss.See omnystudio.com/listener for privacy information.

I'm Matt Nethersole. And I'm Tiff Lam. From TVO Podcasts, this is Queries. This season, we're asking, when it comes to defending your beliefs, how far is too far? We follow one story from the boardroom to the courtroom. And seek to understand what happens when beliefs collide. Where does freedom of religion end and freedom from discrimination begin? That's this season on Queries in Good Faith,

a TVO original podcast. Follow and listen wherever you get your podcasts. Receiving a diagnosis of dementia requires a series of tests and a deep understanding of cognitive function. It also requires someone who can recognize the early signs. In short, the wait time for a dementia diagnosis is long. January is Alzheimer's Awareness Month and to get a better understanding of the disease and

the impact dementia has on the lives of the 750,000 Canadians living with it, we welcome Saskia Sivanathan, data scientist and neuroscientist specializing in dementia. She is the former chief research officer of the Alzheimer's Society of Canada and the founder and CEO of the Brainwell Institute. And we are delighted to welcome you back to these parts. Thank you. Thank you.

Let's start with some stats here and we'll just get this on the record. Some basic stats from Stats Canada and the Alzheimer's Society for people living with dementia in Canada. There are, as we suggested off the top, three quarters of a million people in Canada living with dementia. Canada, there are, as we suggested off the top, three quarters of a million people in Canada living with dementia. As of the year 2020,

it was estimated that more than 60% are women. By 2030, the Alzheimer's Society estimates there will be nearly a million people living with dementia. By 2050, a little further down the road, it estimates there could be more than a million women alone living with dementia. And it's projected that there will be more than a million women alone living with dementia. And it's projected that there will be more than 40,000 people 65 years of age or younger

diagnosed with a form of dementia. Okay, this is coming, so let's get knowledgeable about this. What is dementia? So dementia is an umbrella term for actually over a hundred different diseases under that umbrella. So when people ask me, I often say think of it like we would say cancer. We know there are different kinds of cancers, lung cancer, breast cancer. Dementia is the same. So what's the difference between Alzheimer's disease and dementia?

Same thing. Alzheimer's is the most common form of dementia, but there are many others. Vascular dementia, frontal temporal dementia, Parkinson's related dementia. But the thread that ties all of these dementias together is progressive cognitive impairment. How does that present itself? Right, so it presents as memory loss

that is unusual for the person. So we all forget things, right? But this is the sort of forgetfulness that is more than just regular warning signs. This is a person who might be forgetting to eat regularly, they're not able to do the sort of activities that they've always done on a regular basis, and with dementia that progresses. It continues to decline until they get to the point where the person cannot function by themselves anymore in their day-to-day activities.

We heard three quarters of a million cases off the top here, but I've also heard it's under-reported. Is it possible that three quarters of a million is actually much bigger? Yes, so thank you for asking that because I think what we're trying to get at is the diagnostic rate. So that's the number of people who are actually living with dementia versus the numbers that

are diagnosed. And we don't actually know the diagnostic rate in Canada. The estimate is about 50%. So really only about 50% of people who are living with dementia are actually being diagnosed with dementia. Why would that be? Lots of reasons. There's a lot of stigma around these collections of diseases, right?

There's a lot to fear, and I understand that. You're thinking about memory, which we see is sort of core to who we are, and losing that over time is a very scary and stressful sort of disease. There's also really not a good system of care in place to get a diagnosis or to manage post-diagnosis. We didn't have a lot of therapeutic breakthroughs or interventions until fairly lately for the whole collection of diseases, but especially for Alzheimer's disease,

the more common one. And then I would say ageism as well, because the highest risk factor, especially for Alzheimer's disease, the more common one. And then I would say ageism as well, because the highest risk factor, especially for Alzheimer's, is age. The older, over the age of 65, the older you are, the higher risk of developing dementia. How difficult or easy is it to diagnose? It is difficult. It is a very difficult disease to diagnose for a couple of reasons.

First of all, in Canada the way you would get a diagnosis of dementia is primarily through your family doctor and as you've talked about quite a bit including on this show, getting access to a family doctor is already difficult. But let's say you can get access to a family doctor. Only about 35% of family doctors in Canada report being comfortable with diagnosing dementia and managing it. Because they don't have adequate training?

Exactly. They don't have adequate training. As well, they don't really have a lot of supports after the diagnosis. So let's say they're able to make the diagnosis, what comes next? They really don't have anything to really support the person. We don't have a system of support for it. So the average wait time for a diagnosis of dementia in Canada is 21 to 28 months. We're talking almost two years. Is it as simple as they give you an MRI and you see something on the brain and therefore bingo I know that's dementia?

No, though it is certainly a component of it. So if you were going to go in to get a diagnosis with your family doctor, they'd start actually with a family history because there is a genetic component to some forms of dementia. They'd likely run some blood work as well to exclude that there might be other reasons, other deficiencies that might be causing the symptoms of memory loss as well as other symptoms. They would do an MRI or a CT, and they would see, definitely, in the imaging if there are any signs of developing dementia. But then the fourth is they would do a cognitive test.

And that is tricky. It's difficult because we have language and cultural things that can influence how that test is administered and how people are going to respond to it. But fortunately there are some new diagnostic tools that are coming out that should make that easier. Like what? So for example there are blood tests now being able to diagnose whether someone might have dementia, specifically Alzheimer's disease. There are eye tests

as well that are being trialed and tested to see if that. So again, a little bit more objective, less subjective, in a sense, from the memory tests. And we didn't have any of those before. There are lumbar tests that can also be done, but those are quite painful. And so they try to avoid those.

I don't mean this to be facetious at all, but what if you're just like Joe Biden at that presidential debate and you're having a bad day? Yeah. You know, I don't think he's got dementia, but he clearly was confused that night. What if you get in a situation like that when you're trying to be diagnosed? It happens. It happens.

For sure. I'm probably going to have some of those moments myself, you know, if I'm stressed or I'm worried that I'm going to forget something. But it's progressive and it's consistent. So with dementia, you know, with Joe Biden that day, maybe he had a really bad night, he's under a lot of stress, right? All of those would come of coalesce to him having that forgetfulness that day. But over time, as you continue to see him, you shouldn't continue to see that kind of forgetfulness

and memory impairment. That's the sign that it's not dementia, because this is a disease. You mentioned doctors are not necessarily as equipped as they should be to pick it up when they see it. That must go double, I guess, for the spouses of people who are presumably going to be the front lines on this thing and see it at first. How, what kind of tools or skills do spouses need

to pick up the possibility that I think my partner's got something here? You know, I think spouses, family members are usually the first to see the signs. Because it's usually not, they know the baseline of the person, right? They know what the personality is. Because with dementia, it's, yes, there's the memory loss, but there's disorientation.

The language fluency changes. Personality and mood changes. There's a couple of different things. And people often say when they look back that really those symptoms had been there for a couple of years and they just hadn't realized it. One of the key ones that caregivers have told us about has been financial changes.

So if this is a person who normally managed the finances, paid the bills, things like that, and now we're having difficulty, they're not paying on time, they're withdrawing and sending money to different places, that kind of disorientation and memory loss all kind of coalesces and you see it in the financial changes. What if you don't have a spouse? There's a lot of older people who are living alone. How do they, how does anybody find out if they've got it? It's a huge issue. This is this is a huge issue and I mean speaking from

personal experience my my neighbor when I was a master's student had mild cognitive impairment and lived alone. It progressed into dementia and he had no one to advocate for him. He had no caregiver. So he ended up going to different ERs all across the province and eventually passed away. So caregivers or a spouse are so essential. Some sort of support system, whether it's a family member, a neighbor who's there to advocate and support you is crucial. But that's also because our system is not set up to support people living with dementia and to diagnose them appropriately.

Hm. Let me go to the other end of the spectrum. There's kind of an expectation that if you're going to live in your 80s and 90s, this may be something you have to deal with. But as we said at the top, 40,000 people are going to get dementia under the age of 65. Yeah.

Why is that happening? Why would there be so many more people so young getting it? Thank you for asking that. It's this comes back I think to the idea of thinking of dementia as only Alzheimer's disease and it's not So some of the dementias there is young onset dementia, which happens under the age of 65 There's frontal temporal dementia, which tends to happen in your 50s, sometimes even younger. Parkinson's-related dementia. And these tend to impact people earlier in their life when they're younger.

There's a strong genetic component to it. And that is because all of these dementias are pathological. It's a disease. It's not just the memory loss that is expected to happen as you get older. And it's likely hugely underdiagnosed and we don't have a good count because we don't track how many people have young onset dementia.

Apparently you track the sexes of the people who get it and many more women than men get it. Why is that? They do. The thinking for the longest time was that women live longer than men. And so by default you're living longer, higher risk of developing dementia. But we know that that is not the case.

That there are sex and gender differences that are contributing to why women are developing dementia more than men. So some of the things from a biological perspective, hormonal changes, menopause, when we see that estrogen drop, estrogen is neuroprotective and so that may be one of the reasons that you're contributing to seeing that. Stress markers and inflammation markers are higher in women. Women also are at higher risk and higher rates of depression, which can also be a risk for dementia. Is that because of the men in their lives? I mean I don't know sometimes for sure. But also if you could touch a little bit there's a difference in terms

of how women present with dementia clinically sometimes different from men. So the ranges of symptoms are different, their moods, the changes in mood and personality can be different from men when it comes to how they present with dementia. Can you tell yet whether some people are more susceptible to getting it than others? There are risk factors, yes. And right now the estimate,

this is the population level estimate, is that about 40 to 50% of overall dementias could be prevented if we make lifestyle changes. But by prevented, I don't mean individually. It means you're never going to get dementia. But if you make these sorts of lifestyle changes with diet, exercise, all the things that we know are good for us but are so hard to do.

Do a cross repuzzle every day? Well, yes, the cognitive stimulation is absolutely it. Not being socially isolated during the pandemic, this was a huge piece. Better sleep quality, these are all the sorts of risk factors that contribute to the potential risk of developing dementia. Once you've been diagnosed with it, and it becomes apparent that you're

going to need some kind of more invasive long-term care, how easy or hard is that to get nowadays? It's very hard. Again, a couple of reasons. When you're diagnosed, depending on when you're diagnosed, we see and know that most people tend to get their diagnosis later in the development of dementia, so not really at that earlier stage, which makes planning very hard. And then at that point sometimes it's a crisis moment.

You're getting the diagnosis. About a third of people are still getting their diagnosis of dementia in a hospital. Not the ideal setting to get that diagnosis. It meant probably a misdiagnosis in the community or some sort of a crisis that resulted in them getting that diagnosis. So then you have emergency placement in long-term care or the long wait for a hospital bed. I'm sorry for a long-term care bed and therefore a long wait in the hospital in alternate levels of care. So it is very difficult to be able to get that long-term care as well. Is it like most things in as much as if you diagnose it

early enough, it's easier to treat, and it won't be as potentially deadly sooner? Kind of on the nose and kind of not. Kind of not. Yes. So the earlier you are diagnosed, the better for a couple of reasons. The first is that you can plan better.

You can put in place the kind of goals of life you want. What do you want in terms of how you're taking care of as the dementia continues? Because it will continue, and it is a life-limiting disease. So you do die from dementia. But more importantly, a lot of the treatment options that are starting to come out for dementia are really, and specifically Alzheimer's, is in the earlier stages.

There's also good research showing now that those lifestyle changes we talked about, again, if you can make those changes earlier in your diagnosis, you can slow that cognitive decline so that you can put off how long it's going to be impacting you. Would that be a case of staving off decline for months or years or what? So right now the studies are only showing months but they are doing longer-term studies to see if it means you can stave it off for longer. This is really something you don't want is it?? I mean, it's just one of the really nasty, awful ways to die, isn't it? There's no other way to put it.

I mean, it is a hard and difficult disease, and it's a hard thing to talk about. There's a lot of stigma around it. But just like with all those other diseases that we've been dealing with, cancer, stroke, heart disease, HIV, AIDS, by dealing with it, talking about it, and then starting to put in place the sorts of treatments and care plans we need, that's how we start managing it better. I guess it's true that for the longest time cancer was one of those words you didn't say out loud. You didn't. And then eventually, you know, now we

have galas and, you know, big fundraisers and marathons and so on to raise money for cancer, and people are not hiding in the corners with it anymore. Do we need that for Alzheimer's and for dementia in general? We do. We absolutely do. How do we get there? It's a bit harder with dementia and Alzheimer's more broadly because people themselves who are living with the disease eventually get to the point where they can't express themselves At least not the same way and so unlike with cancer where the person might be able to still talk about what their experience Has been it's a lot harder with dementia and there is a healthy dose of ageism in our society

we tend not to value the later stages of life as much as we do the middle and earlier stages. But we do need to be able to have caregivers and people living with dementia more actively talking about what that experience has been, raising that broader awareness and pushing for the kinds of policy changes that we need to support it better. I'm going to give you a little example here, and I want you to tell me how typical this is, because I remember meeting somebody in an event, and we had just the most fascinating, wonderful conversation. And it probably lasted five minutes, and then we went our separate ways. And I asked somebody else at that event about that woman, who I guess was in her 80s at the time.

And I was expressing my, I was so impressed with how interesting she was. And the person said to me, yeah, now go over and talk to her again, and you will have the identical conversation with you. And she will not remember at all that she'd had it with you even five minutes ago. Is that typical? It can be, depending on the stage

that the person has with dementia. So the person you spoke to was likely at the moderate stages of dementia, which means that the short-term memories, which is that she had just met you five minutes ago, probably didn't know you before that. So the likelihood that she was going to you five minutes ago, probably didn't know you before that. So the likelihood that she was going to remember her conversation with you was lower. But it didn't mean that she couldn't express herself and that you had a fantastic and fascinating

conversation with her, right? Absolutely. But what it meant was if I was looking to find out if this person had dementia, I never would have believed it in a million years. You wouldn't know, exactly. And that is true with some forms of dementia. But as it progresses, eventually some of that language fluency starts showing up, where they're having difficulty with remembering certain words and being

able to express themselves well. OK, in our last minute here, you talked about how difficult it can be to get a diagnosis and so many of the other difficulties along the way. I'm sure there are people watching this or listening to this right now who are going to be dealing with family members who've got this, right? Because this is a coming thing. It's here and it's going to be even bigger. What's your advice for them on how to navigate these choppy waters? I think the first piece is that as scary as this disease is, you want to be able to try

and get diagnosed as early as you can, and you have to advocate, you have to push. We do not have a clinical pathway of care for dementia through the health system, which means that there's no one going to help you to figure out where to go next and what to do next. There are local supports, so there's home care, long-term care, Alzheimer's societies, Parkinson's societies that offer some education and support, but you have to go find them

and you have to advocate for them. But by advocating, you're able to get the kind of care that you need best for the person whom you're trying to support. And try to get that down on paper. Get a power of attorney down. Write down what your goals of care are and then plan those out because you still have control over all of those pieces.

And get the kind of education that you need because as this disease progresses for caregivers, it's a whole new skill set that you need to be able to support the person. And you need to be able to get that kind of training early. Gotcha. Saskia Sivanathan, researcher, neuroscientist, CEO, the BrainWell Institute. Really good of you to spend so much time with us here tonight on TVL. Thank you for having me.