Clip
You’re listening to a frequency podcast network production in association with City News.
Jordan Heath-Rawlings
So far this week, we have been laser focused on the crisis facing our healthcare system now and as you know, things are not great. But there is a bigger reason we’re tackling this subject than just the current problem. See, the subject of today’s episode could have been any number of things that will increase the demand on a system that can’t take it. Most experts say we are likely to see a resurgence of COVID this fall, even if we don’t. If you listen to this program, you know that we have already seen a wave of monkey pox and even in some places, a reemergence of polio. So I’m not going to bet against some other infectious disease messing with us over the next decade or two. But that almost doesn’t matter because we are not confronting the crisis that we know is coming. Unless measures are taken to reduce the risks and delay the onset of the condition, close to one 4 billion caregiver hours, the equivalent of more than 690,000 full-time jobs, will be required to support the one 7 million Canadians who have dementia by 2050. As you might guess, we definitely do not have 690,000 full time jobs ready to be filled so that we can properly care for our elders. So what will happen? While some of these people will, first of all, not have family doctors to go to when their symptoms begin to emerge, some of them will end up in long term care facilities that have no room for them and almost no nurses. And some of them will end up disoriented in emergency rooms, waiting with nobody to care for or advocate for them. And we are walking right into this. So forget whatever could potentially emerge to wreck our system. Forget about maybe threats. There is one right in front of us. We know it’s coming. What are we doing? What should we do?
I’m Jordan Heath-Rawlings. This is The Big Story, part four in our five part series on the healthcare crisis, dementia, and our aging population. Dr. Brian Goldman is a veteran emergency room physician and he is the host of CBC Radio’s The Dose, and he recently wrote a foreword for a landmark study produced by the Alzheimer’s Society of Canada. Hello, Dr. Goldman.
Dr. Brian Goldman
Hello, Jordan.
Jordan
Why don’t you start, maybe for the purposes of this conversation with kind of defining dementia. I think everybody probably associates it with Alzheimer’s. Is that all there is to it? Is there more than that? What is that?
Dr. Brian Goldman
Dementia is a disorder of the brain that causes memory loss. It causes difficulties with attention, problem solving, what we call executive function, stuff that we take for granted, like planning your life, planning your meals, your vacation, everything. Language, changes in mood and behaviour. It can cause issues with vision, balance, mobility, and movement. And eventually, it affects more basic functions like the ability to swallow without swallowing food into your lungs. That is, the most common form, as you’ve said, of dementia is Alzheimer’s disease. But the second most common is called vascular dementia. It’s caused by strokes. Less common types include Louis Body disease, which incorporates dementia with Parkinson’s symptoms, and another type of dementia called frontotemporal dementia, which affects speech. Robs, you of speech fairly early on in the disease.
Jordan
So currently in Canada, at least if we know this, what percentage of people find themselves wrestling with some form of this as they age?
Dr. Brian Goldman
Well, right now, 8.4% of Canadians over the age of 65 have some form of dementia. Keep in mind that we define young onset dementia as dementia where the symptoms begin before the age of 65, and a smaller percentage of people have symptoms of dementia below the age of 65. As we age, the percentage goes up and up and up. And in fact, by the time you get to age 85 and older, one in three of us have dementia.
Jordan
Wow. So tell me first, before we get into some of the details about the disease and what Canada is grappling with here, tell me about this landmark study. What did it seek to understand?
Dr. Brian Goldman
Well, the study sought to create a snapshot of the number of people who have dementia today. Right now we have about 6000 people living in Canada who have dementia. So the study was trying to figure out how many of us will have dementia, not just today, but in 2030, 2040, and as far as 2050, and what impact that will have on the people who love them, the close family members who take care of them. And more importantly, I think, well, that’s important, but equally important, how living a healthier lifestyle might reduce the numbers or at least slow the impact of this tsunami of dementia, the impact on the healthcare system, and on the people who love those who have dementia.
Jordan
You mentioned a tsunami. What do we know after the study about the scale of this problem in, say, 2030, 40 and 50?
Dr. Brian Goldman
Well, it’s immense. I’ve already said that 600,000 people are living in Canada right now who have dementia by 2030. If nothing changes, except that our population ages will have close to a million with dementia, and we’ll be acquiring new people with dementia at the rate of 125,000 new cases per year. By the 2040, more than a quarter of a million people will be developing dementia in Canada each year. If you think about it, if we have 600,000 people who have dementia right now, can you imagine an extra 250,000 suddenly added to the system? By 2050, the number of people living with dementia will reach 1.7 million. And if you’re wondering why that number isn’t higher based on what I just said, it’s because dementia causes early demise. So a lot of those people who develop dementia will die of it and often die of it within five or six or seven years.
Jordan
You’ve covered on your radio show and podcast the state of the Canadian Healthcare System. We’ve covered it on this show. To put it bluntly, is our healthcare system prepared for that scale of dementia patients? And if not, just how unprepared are we?
Dr. Brian Goldman
Well, I’ll see you’re blunt with some more bluntness. We are largely unprepared to meet the needs of the thousands of Canadians who are going to be diagnosed with dementia over the next three decades. We lack capacity, Jordan, at all stages of the disease. We don’t have enough facilities to provide an early diagnosis. We heard just in the last few days that we’re going to be having in provinces like Ontario, the great retirement of family doctors. It’s family doctors and nurse practitioners who make the initial diagnosis in most cases. And we’re going to have more and more people who don’t have a family doctor. So I guess they’re going to be showing up in the emergency department with dementia, and we’ll be the first people to have made that diagnosis. We lack memory clinics, which the landmark study says we need more of them. Clinics where we can provide evidence based advice on what to do about dementia and how to try to prevent it. Thousands and thousands of Canadians depend on will depend on home care. Home care is in crisis. The system currently, Jordan is telling clients that they qualify for, say, 16 or 18 hours a week. But the system can’t provide those hours because there aren’t enough personal support workers. There aren’t enough occupational therapists, speech and language pathologists nurses. I can go on and on about care providers. There is currently a huge and growing deficit of long term care beds. And some of what I’m talking about is the aftermath of covid. But a lot of the crisis began far before the pandemic.
Jordann
Maybe we can unpack the kind of care these folks will need a little bit. Let’s start with the diagnosis. What should people know about symptoms to watch out for and how this is diagnosed?
Dr. Brian Goldman
Well, the first thing, and usually as close family members are going to notice that people who see you occasionally in casual conversation may not pick it up. Because if the people who have dementia in the early stages, they can cover it up by maintaining social graces and by volunteering information instead of waiting to be asked. When they’re asked stuff, they may have trouble answering. But if they can prepare stock answers, they may look and appear normal. But caregivers, the people who love them know what’s going on. They will suddenly notice that the person who did the finances in the family can no longer do them. The first discovery might be that bills that were ordinarily paid for quickly, promptly on time, maybe even early, are not paid at all. And suddenly you owe three months on utilities that had never happened before. You might get comments in the case of a close family member of mine. I got comments from the friends of this loved one saying, what’s going on? She doesn’t seem right these days. They will forget things that are known to both members of a couple. They might forget significant dates, significant names of people. So those are the kinds of things that they’ll notice. They might also have perplexing moments when their behaviour changes, when they become agitated and angry and you don’t know why, and it’s a sudden change in their personality. You might notice that if they were fluent in language, that they had a huge and varied vocabulary, that it becomes constricted that they start talking. They give stock answers to questions that they might have been more loquacious about. So those are some of the initial symptoms to look for. The care that they need will really depend on the type of dementia and the stage. Certainly, Jordan making the initial diagnosis is a shock to the family. And it wouldn’t surprise you if I told you that it can sometimes take months or a year or two to get a diagnosis, partly because of denial. Because I’ve had a lot of friends who have said that if there was a test for dementia, they wouldn’t take it because they’ll know soon enough. And who wants to know that they’ve got dementia?
Jordan
Well, I understand that one of the reasons that you wrote the forward for this and are championing this study is because you’ve cared for loved ones with dementia. Can you tell us about that, if you’re comfortable with it? Just what should Canadians know and expect as their parents and beloved elders age?
Dr. Brian Goldman
Well, it’s a lot, and I liken it to the beginning of a journey. We often talk about illness journeys. And some people don’t like the term. But I’m referring to the kind of situation you land in when you have a loved one who has a serious long term disease like cancer. Or maybe you’ve got a family member. A close family member. In trouble with the law or a massive lawsuit or a bankruptcy or something where it’s not going to be one and done. You can’t undo it in a second. It’s going to change your life and change it for years. So I’m comfortable talking about my family because I think it’s important that we share information about it. My sister and I helped our parents. Our mother, who passed away in 2016, had Alzheimer’s, and my sister and I, we hired caregivers and provided care for our parents. We dealt with the private system. We dealt with the public system. My mother had Alzheimer’s. Dementia. My late father cared for her at home for 15 years. And we think my sister and I believe that our father kept our mother going at a time when her level of dementia was profound, and he kept her at home for a long time, and he boosted her level of function by being a constant companion to her. And he did it until one day she was hospitalized with severe dehydration and he read the riot act. You can either preside over her death, or she can go into long term care. So she went into long term care, and I can tell you, it broke his heart. And six months later, he had his first heart attack at the age of 89. And this happens with the caregivers. And my mother in law went through a similar process with my father in law. And by the way, my father never talked about all the personal care that he provided for my mom. At first, he was her social convener, he was her bookkeeper, her travel planner, and the occupational therapist took her on walks, made sure she kept active, brought her to day programs, and eventually provided intimate personal care that in retrospect, I’m amazed that he did it. He fed her. He did the kinds of things that people who have a loved one a close level with dementia will have to do. More recently, my sister was diagnosed with dementia in the last five years. She has a form of young onset dementia, and I have become her essential family caregiver, what the landmark study refers to as a care provider. And at present, she’s living in long term care. She is passing through a predictable progression of dementia where now she needs feeding. And in fact, I sometimes feed her meals. I might feed her two or three meals a week. I’ve hired caregivers to do that. The long term care facility also provides caregivers who do that, and I’m determined to visit her almost every day if I can. And adding it up right now, along with some of the guardianship power of attorney issues, I’m probably spending 20 to 25 hours a week. That’s my new additional job. In addition to all the other things, being in a merged physician and hosting a podcast and writing books and stuff. So you can imagine if it’s raised my stress level, you can understand whenever I get a phone call from the facility saying, do you give permission for your sister to get the new COVID vaccine or a flu shot? My heart stops because she was admitted to hospital recently with aspiration pneumonia and nearly died. So I’m still getting over the trauma of that. So I’m sharing all that because there’s an emotional impact as well as a time commitment that’s involved in this.
Jordan
That’s really tough. Thank you for sharing.
Dr. Brian Goldman
Yeah, it’s tough. You’re right. Thank you. Thank you for saying that.
Jordan
You mentioned a little while ago that there is no real one size fits all for the progression of dementia. Will everyone with a loved one who is diagnosed eventually end up in that situation where they either need to move to a long term care facility or have constant personal, intimate care? Or is this a spectrum that we’re talking about?
Dr. Brian Goldman
Well, there is a spectrum, Jordan, and the spectrum depends on the type of dementia. There’s a tremendous degree of variation on how quickly things progress, and I can give you my end of one anecdotal experience or my end of three anecdotal experience. My mother had a trajectory of dementia that went on over 15 years, 18 or 19 years, which is on the long end. Typically, it’s more like 4567 years. And yes. If a person with dementia lives long enough and doesn’t die of pneumonia or sepsis or doesn’t have a heart attack. In the meantime. They will almost always require that intimate personal care that I’ve talked about. Where they need to be turned in their bed. Where they need to be fed. Where they need to be brought to the toilet or toileted and turned so that they don’t get pressure sores. Typically at the end stage, they may have difficulty swallowing, and they’re at risk of aspiration, which is often one of the causes of death. But dementia itself causes the brain functions to stop, and some of those brain functions are involved in things like making sure that you keep breathing. That’s the spectrum. There isn’t one size fits all. But if you are a caregiver, if you’re a partner of someone with dementia, I’m talking about partners, because it’s usually the partner that bears the brunt, right? You’re going to be spending an average of 26 hours per week providing care. And that’s part of a spectrum. I’ve met people who spend 14 hours a day providing care. What the landmark study found is that the number of hours that are being provided today are equivalent to 235,000 full time jobs. If you’re talking about a 40 hours per week job with two weeks of vacation by 2050, assuming that the increase in the number of people with dementia continues as predicted, the number of care partners living for people living with dementia would increase to over a million. And until recently, the vast majority of care partners, as I’ve said, have been spouses. But the study predicts a large increase in the number of middle-aged people ages 45 to 65 caring for people living with dementia. And clearly a lot of them will be the children of baby boomers.
Jordan
So we’ve covered the upcoming scale of the problem. We’ve covered a little bit and could probably do an entire podcast episode on all the kind of resources we don’t yet have in the healthcare system. One of the things you mentioned the study also sought to explain is how we can prevent this. So does this study take into account any mitigation measures? Do we know of any ways to stave off dementia or prevent it that we should be working with our partners or working with our parents on?
Dr. Brian Goldman
There are, fortunately, ways to at least delay the onset of dementia or the progression of dementia, things that have been shown to improve brain health. So being physically active each day I run every other day. But you don’t have to do that. You can go for a brisk walk. You can swim. You can rollerblade. You can ride it. You can ride a bike. You can dance. Getting plenty of sleep is important. Being socially active and engaged, which means not withdrawing from your circle of friends, staying out there, going for those weekly or daily coffees at Tim’s, doing activities that you enjoy, and making sure to keep doing activities that challenge you, and trying to learn new things as well. So not just doing Sudoku or Wordle, but trying the newest puzzle game, because that’ll help engage you in new and different ways, learning a new language. There are medical things that you can do that are very important. Turns out that getting good treatment for high blood pressure, type two diabetes, other cardiovascular diseases is important. Quitting smoking, limiting alcohol are also helpful. And here’s one that don’t wait too late if you’ve been hearing. There have been lots of ads these days about hearing AIDS, about hearing AIDS that are available in the United States without a prescription. It’s important if you have hearing loss associated with age, because using a hearing aid will help keep you engaged, paying attention to what’s on the TV, also paying attention to casual conversation with friends and neighbours that will keep your brain active. And it turns out that the more of these things that you do, the better. If we can delay the onset of progression of dementia by just one year, that alone would reduce by half a million the number of new cases of dementia by the year 2050. And if we could delay the onset of dementia by ten years, over 4 million new cases of dementia would be prevented. And we would actually end up in 2050 with slightly fewer people with dementia living in Canada at that time compared to today. Address your health, and that could make a massive difference on our society.
Jordan
What about treatments for dementia once it’s diagnosed? Aside from caregiving, what kind of medical help is available? Do we have any medications?
Dr. Brian Goldman
We have a small number of medications, and they have names like Aracept or Donitozil Exalon or Rivastigmine, Reminil or Galantamine. And then the fourth medication is ABYSSA, which is also known as Me. And I the first three of the medications that I mentioned, aracept, Epsilon, and Reminis, worked by boosting memory, by boosting a brain chemical called acetalcholine. Abyxa, or Mementine help stabilize the brain and prevent it from suffering further damage. And it works by preventing an excess of a brain chemical that’s not helpful. It’s called glutamate. It’s not particularly helpful to the brain. So those are the medications that are available. They’re not great. They may improve your ability to follow conversations, may improve your memory a bit, but they really don’t stop the steady progression of dementia.
Jordan
That’s the last thing I want to ask you, is where is the research on this. Where could a potential breakthrough come from? I know we recently saw president Biden in the United States announced that he was taking on a moonshot on cancer with the hopes of drastically cutting or even eliminating it. Is that possible with dementia? Where could a kind of breakthrough come from?
Dr. Brian Goldman
Well, I think there are some other countries where there are some examples that might inspire us. I visited Japan for my book the Power of Kindness, because Japan is all over robots. They love robots. They’ve created a lot of intriguing robots. And it turns out that Japan, which of course has the oldest population on the planet, they’re looking at a huge and growing gap of caregivers, and they have spent close to $15 to $20 billion. And they’ve described it as a moonshot that combines government money, private enterprise, and academia to develop robot caregivers or care bots. Now, I’m not saying we should do the same. That’s what we’re looking for when it comes to dementia. But that kind of combination of government money, private enterprise, and academia all working together towards a common goal, probably shepherded by the government, could go a long way to kind of reorienting our research and trying to put things back on the right track. I listened to the program you had not too long ago in which you talked about that previously seminal study that was published in 2006 that apparently provided evidence for the treatment approach that many drug companies have been using, and that was to try to reduce the beta amyloid in the brain. And you know that that seminal study is now under a cloud of suspicion, and a lot of research was galvanized as a result of that so called seminal papers. So I think right now, academia and the pharmaceutical industry is taking a deep breath and trying to assess the damage there. And this may be an opportunity to reorient the research towards more promising results. One last question then, and it is about resources. We’re constantly, whether we should or not, making choices in Canada in terms of priorities for funding the healthcare system.
Jordan
As an emergency room physician, as somebody who cares deeply about this issue, if we had some money and investment to put towards dementia in the healthcare system, where would it go?
Dr. Brian Goldman
To me, hands down, home care. That’s the place we need to change home care. There’s a Dutch model called but is a terrific model that instead of providing vanilla, one size fits all care for everybody, regardless of their need, actually has caregivers on the ground in your neighborhood, assessing your needs and changing care based on exactly what you need. It’s a better system. We should actually take money out of long term care and put more money into home care. If we do that, then we will make things better and allow people with dementia to continue to live out their lives at home where they prefer to be with a lot less stress on the people who love them. Dr. Goldman, thank you for this and really appreciate your time.
Dr. Brian Goldman
I enjoyed speaking with you, Jordan.
Jordan
That was Dr. Brian Goldman, host of CBC Radios, The Dose, author of The Power of Teamwork how We Can All Work Better Together, an emergency room physician and the author of the forward of that landmark study. That was the big story. For more in the previous three episodes in this series, you can head to the Bigstorypodcast CA. You can talk to us on Twitter at thebigstoryFPN. You can, of course, always write us an email hello at the Bigstorypodcast CA, and you can even call us, if you prefer, and leave a message 416-935-5935. Thanks for listening. I’m Jordan Heath-Rawlings. We’ll talk tomorrow.
Back to top of page