The race to deal with dementia in Canada

Transcript

Intro Speaker:

Hello, and welcome to Matters Beyond Wealth with your host, Leanne Kaufman, president and CEO of RBC Royal Trust. For most of us, talking about subjects like aging, late life, and estate planning isn’t easy. That’s why we’re going to help get the conversation started on this podcast while benefiting from the insights and expertise of some of the country’s top experts. We want to bring you information today that will help to protect you and your family in the future. Now, here’s your host, Leanne.

Leanne Kaufman:

Hello, I’m Leanne Kaufman, and welcome to RBC Wealth Management Canada’s Matters Beyond Wealth. According to the 2021 census data, the number of Canadians over age 85 is expected to triple in the next 25 years. Canada’s public health agency has published statistics indicating that the prevalence of diagnosed dementia is about 25 percent of the population over 85.

That’s diagnosed dementia, so the real number could even be higher. This means we can expect the number of Canadians suffering from dementia to expand almost exponentially in Canada in the coming decades. If you’ve been following the media, we know our country is not adequately prepared to support the number of people with dementia now, let alone the growth in the future.

Today, I am so delighted to be joined by Laura Tamblyn Watts, the founder and CEO of CanAge, Canada’s national seniors’ advocacy organization. Laura has emerged as a go-to media commentator and trusted voice for Canadian seniors underscored by more than 20 years of experience defending the rights and dignity of older people as a lawyer and as a thought leader.

Laura is actively involved in seniors’ legal, financial, and regulatory reform initiatives in Canada, in the US, Australia and the South Pacific, including sitting on several federal government advisory boards and working groups, guiding public policy standards and legislation.

She’s an expert in long-term care and residents’ rights and has written numerous papers and contributed extensively to research on aging issues.

Today, we’re going to focus on discussing the findings from CanAge’s most recent Dementia in Canada Cross-Country Report, and whether Canada can keep up with the growing need. Laura, thanks for being here with me today to talk about Canada’s readiness to deal with the looming dementia crisis and why this matters beyond wealth.

Laura Tamblyn Watts:

Thanks for having me.

Leanne Kaufman:

Let’s start by talking about the reason CanAge decided to do this report in the first place, what led you here?

Laura Tamblyn Watts:

We put together a national dementia strategy across this country, and it was brought forward between 2017 and 2019. We wanted to ask the question, how are we doing? We have a strategy, but everyone knows unless things are measured, nothing tends to really be very nailed down.

We started digging into seeing how dementia-ready this country is, and we expected a bad result, let’s just be clear, but we didn’t expect this bad a result. We also found was that we are looking at it, both across the country federally, but many of us, are really clear that healthcare and lots of social care is provincial and territorial.

It also required us to look at how we were doing it in every single jurisdiction across the country, and the answer is really bad there too. The federal government isn’t alone, the provinces and the territories are in equally bad shape. Then last we wanted to see how are people living with dementia and their caregivers managing? What’s their story? How are they experiencing that? What we found was really dire.

Leanne Kaufman:

Well, we’ll dig into some of those results in a couple of minutes, but maybe you could start off by telling us a little bit about the WHO and the OECD data that you used in support of your research here.

Laura Tamblyn Watts:

We wanted to try to find something neutral and accepted when we were measuring the national dementia strategy. We actually found out that there had never been a national dementia strategy set of metrics, so we went to the OECD, we went to Alzheimer’s Disease International, and then ultimately the UN and the World Health Organization.

To give you a little bit of a sense globally, across the entire world by 2050, the number of people over 65 will reach 1.5 billion people. Just to offset that in 2019 it was one in 11 and by 2050 it will be one in six; but really in North America will be one in four.

Our new stats Canada information says that we are aging in Canada even more rapidly than we thought that we were. At the World Health Organization, they created this global dementia strategy and they found that 78 million people—78 million people globally—will have dementia by 2030, and that’s only a couple of years away.

Then make it just a little farther out, and that’s where you see your exponential numbers. So, 78 million by 2030, and 139 million by 2050. It is also the seventh leading cause of death amongst all diseases and one of the most significant causes of disability and dependency amongst older people globally.

Leanne Kaufman:

Wow. Yeah, those are frightening numbers. Now you’ve referenced Canada’s national dementia strategy a couple of times. Can you tell us what that is?

Laura Tamblyn Watts:

It’s a comprehensive roadmap which identifies key themes and priorities around dementia care. It was supposed to be a starting point for coordinated approaches to deal with dementia care in Canada. It was a mechanism that was supposed to allow funding in key areas, particularly of course research and public education.

“It’s also our way of [joining] the World Health Organization’s push for [a] dementia [strategy], but lots of people are confused about what it is and what it isn’t. What it isn’t is just as important. It’s not an implementation plan, it doesn’t have any clear measures, so it’s quite aspirational. It doesn’t require a data-driven approach, it doesn’t say where the key gaps are and doesn’t help us really assess the problem.

It’s also not a roadmap or a document detailing how governments will work together. It also isn’t really an effective vehicle for transferring dollars. It’s quite aspirational and it is our commitment globally, but in the end, it’s not a real effective mechanism. We needed to see what this aspirational roadmap did and whether it was enough. We found out it really wasn’t.

Leanne Kaufman:

Yeah, so tell us a little bit more about that. What did your research determine about Canada’s readiness for this exponential growth we’ve been talking about?

Laura Tamblyn Watts:

There is no single jurisdiction in the country that was considered ready after we did this report. It was one of the first times we ever got kind of all the data in one place. We looked at a number of key measures and some really jumped out at us. We wanted to see how do people get treatment and care?

Do they get it from their GP? Does their GP feel ready? Do they have a GP? Increasingly, of course, that challenge is on that point. We wanted to see what are preventable aspects of some forms of dementia. We know that dementia is an umbrella term—lots of different kinds of dementia. Alzheimer’s is the one we know most of, and it’s really the most prevalent form.

There’s also things like vascular dementia, Lewy body dementia, Korsakoffs, and other forms of dementia. So imagine dementia as an umbrella term with Alzheimer’s taking up the biggest chunk of it. We wanted to see how many people in each jurisdiction specialize in not just dementia—that’s actually too small— but just could have the expertise to talk about dementia.

We’re looking at things like geriatricians, which are specialists for people who take care of older adults. We wanted to look at things like how many neurologists we had. Now, remember, most neurologists don’t deal with dementia. They often deal with strokes and other kinds of things, but they could. We wanted to see how many geriatric psychiatrists have—again, geriatric psychiatrists can deal with any form of psychiatric challenge, not just dementia, but again, could. We looked at that capacity, one of the ones that sticks out for me is just how offside, how lopsided we are in our care capacities.

The statistic that really speaks to me most—particularly at 3:00 AM when I’m up worrying about these things—in 2020, in Canada, there were about 6,500,000 or so children, 17 or younger, so about 6.5 million, and there were about 2,300 pediatricians. What that means is there’s one pediatrician for something like 2,800 children. In that same year, there’s more seniors. So in 2020, there’s 6.8 million seniors, and only in that year, 327 geriatricians in the whole country.

That means there’s one geriatrician, a specialist doctor in older adults—not just dementia, just anything to do with older people—so one geriatrician for every 21,000 seniors and that number is getting starker because that 327 geriatricians, lots of them are retiring and we’re not bringing more in. Then we did a bit of a deeper dive to see how we’re doing in other areas, and the numbers are even worse.

Leanne Kaufman:

Well, and I mean, those numbers about geriatrics versus pediatricians, and you think about the medical intervention that a senior experiences in a year versus most children under 17, it probably becomes an even harder pill to swallow, so to speak. So for all the med students listening, please consider a career in geriatrics. When does impairment, or signs of impairment begin versus when someone actually ends up getting in front of a doctor and getting a diagnosis?

Laura Tamblyn Watts:

We know that there’s about 10 years where we have something called mild cognitive impairment. The first thing that goes is that higher level abstract thinking and risk tolerance. This is one of those reasons that we’re talking beyond wealth. It affects your wealth because this is where people get into really risky financial behavior, and we need to make sure that there are supports.

We’re not taking away everyone’s rights, but 10 years and that higher level investments, those are the first things to go. Then you get into trying to get a diagnosis, which can take an additional one to five years, so you may be managing cognitive impairment for up to 15 years before you get a diagnosis.

Leanne Kaufman:

Wow. Tell me a little bit, Laura about the impact to families and caregivers resulting from the data you found.

Laura Tamblyn Watts:

We call it the hidden patient group. We know that people who are providing care, and many of them won’t even self-identify as caregivers. Could be your spouse, you might not think of yourself as a caregiver, you might just think of yourself as a partner. But somebody who’s providing care to another person. Now these are people who are untrained, they’re like you and me.

I have dementia in my family. I’ve been one of those caregivers, and lots of other folks listening will as well. Seventy-five percent of all care in Canada is provided by family and friends for people with dementia. I got a babysitting training course when I was 12 years old, and I learned how to change a diaper and do all these other things. There’s no training for family caregivers for even basic geriatric care, let alone that specialist knowledge that you need to help with somebody with dementia, so that is a really big gap. We also found out, and this should come as a surprise to nobody, that caregivers are exhausted, that there is very little respite, there is very little help and support.

It does overwhelmingly fall to women, although that’s not always the case. If it’s a peer, quite often it’s a spouse, but otherwise generationally it tends to fall to women. It’s that sandwich generation that I’m in, kids below, parents above and often people are trying to work at the same time, and it’s just not sustainable.

Leanne Kaufman:

I listened to another podcast on the weekend, and the woman who works in the elder caring space was making the point, kind of like what you’re saying about the babysitter course. People conflate childcare and elder care.

If you think about when you planned to have a child, if you planned to have one that you know planned financially, you planned your time, you planned for caregiving for the child, and you planned a space physically for that child. Nobody has the opportunity to plan when they’re going to become a caregiver for a parent or an older family member.

You broke down that the situation in the various provinces and territories across Canada as well as part of your research. Are you able to give us any insights into which geographies you think are a bit better prepared and which might have the most work to do?

Laura Tamblyn Watts:

It won’t surprise you to know that the more populated and wealthier province have more supports. That means Ontario and Quebec and a little bit of BC have a little bit more support in that, but it’s still not great.

Let me give you a little bit of an example about some of the key responses in our survey. One of the things that we asked and wanted to find out more about is how confident is your regular GP? These are the people who you in theoretically would go to for all of your care. They’re the ones who are supposed to be following you for years, and they’re the ones that would probably take your license away if you couldn’t drive anymore, and they’re the ones that would refer you to specialists.

We asked a couple of key questions. The first is, how confident are you in recognizing and diagnosing dementia? The second question is, how confident are you in treating somebody with dementia? And the numbers were shocking, so we asked a confidence rate.

To give you a sense, in British Columbia, which is on the whole a pretty good healthcare system, only 48 percent of doctors felt confident recognizing, diagnosing, or treating people with dementia. That means 52 percent of GPs don’t feel confident. Let’s offset that to others, how do they feel about diagnosing chronic conditions? Eighty-five percent feel pretty confident, so only 15 percent don’t.

For mental illness, 67 percent feel confident. Now let me take that perhaps to a couple of other jurisdictions because that’s a really shocking thing to hear. If you are in, for instance, the Yukon, only 19 percent of GPs—19—feel confident recognizing, diagnosing, or treating someone with dementia. These numbers are really terrifying.

Then we also looked at other things by comparison, like palliative care and chronic conditions and again, huge difference in that. So what we know is that GPs and other primary healthcare providers do not even feel basically comfortable. To close, let me tell you, in Ontario, only 36 percent of GPs feel comfortable recognizing [dementia, and] only 30 percent [feel comfortable diagnosing it, in the case of] chronic conditions [this proportion is] 90 percent—so we have a long way to go.

Leanne Kaufman:

Right, and again, speaks to that need for specialization maybe. Laura, there must be a glimmer of hope in all of this. Where do you feel optimism?

Laura Tamblyn Watts:

There’s some really great new treatments coming down the pipe. Pfizer and some others are looking at some interesting new molecules, and there’s some really great research which is going on around dementia. Again, dementia’s an umbrella, so it probably won’t crack all dementias, but one of the things that we know are really challenging is that people don’t get a diagnosis partly because they’re afraid, partly because they’re stigmatized, and partly because they feel like there’s no hope.

A real glimmer of hope to me is we’ve got some trials that could even be heading into market approval even in a year or so. Again, it’s not going to help everybody. Any of the treatments that we have for dementia are in the earliest stages, so that’s the other area of hope. We have seen that people don’t get that diagnosis either through availability of geriatricians, geriatric psychiatrists or neurologists.

The GP has got a really low confidence rate, so what else can we do? There’s some fantastically new and interesting technologies coming down the pipe. One of them can actually look into your eye and to your retina and find biomarkers. You could literally go into a pharmacy in future, put your chin on a spectrogram and have someone look into your eye through a machine and see if you’ve got the biomarkers. Now I’m not suggesting that you know should do that with no support and care, but the idea is you could be in rural communities.

The other interesting new technology, and this is really quite close to market, is voice pattern recognition. We’ve seen that the tests are as good as top geriatricians and geriatric psychiatrists to see speech patterns—maybe you saw Donald Trump getting analyzed around some of those things—but that stuff is really coming to market, so there’s good hope. Early diagnosis is key, technology is going to help, and there’s some new treatments coming down the pipe.

Leanne Kaufman:

Well, that’s good, I’m glad to hear that because we need to know that there’s some positivity as part of all this as well. Laura, if listeners can only take one thing away from this conversation, and I think one thing is hard to take away from this conversation because there’s so much packed in. What would you want that one thing to be?

Laura Tamblyn Watts:

There’s lots you can do to prevent dementia, and not every dementia, but many forms of dementia. I kind of roll my eyes because it’s kind of the same thing that prevents anything, eat right and exercise. But despite a bit of that eye rolling, we know this to be true. If you reduce your alcohol, it helps. If you reduce your obesity, it helps. If you stop or reduce smoking, it helps. And if you start any physical activity, it helps. Okay, but I mean, that helps lots of stuff.

Here’s some other things that you can do. There’s some really interesting research around keeping your brain active. What we talk about is brain health, and okay, I got to tell you, Sudokus not going to help you. It’s fun, feel free, keep playing, but that’s actually not going to keep your brain healthy. There are some things that will. Picking up a musical instrument, even if you’re bad at it like I am, the act of trying cross hatches between the globes of your brain and that keeps going. Learn a new language, again, you don’t have to be good, but the act of learning.

That lifelong learning and planning for things also reduces worry later. So wealth management, playing around the “what if’s” is key. Personal family planning around what can happen is really helpful. Just the acts of confronting the “what if’s” and making a plan could actually, in some cases, not just reduce your stress, but actually keep your brain going.

Leanne Kaufman:

Oh, that’s great to hear, and those are some great practical tips. I think Laura, we will probably need to dive into this topic again in the not-too-distant future. But for now, I just want to say thank you so much for joining us to share this report and shining a little bit of light about how unprepared we are as a country to deal with the number of our seniors being impacted by dementia, and of course why all of this matters beyond wealth. You can find out more about Laura on LinkedIn and more about CanAge at CanAge.ca. Thank you so much, Laura.

Laura Tamblyn Watts:

Thank you.

Leanne Kaufman:

Until next time, I’m Leanne Kaufman. Thank you for joining us.

Outro speaker:

Whether you are planning for your own estate, the needs of your family or business, or you are an executor for a loved one’s estate, we can help guide you, simplify the complex, and support your life’s vision. Partner with RBC Royal Trust and ensure your legacy will thrive for generations to come. Leave a legacy, not a burden™. Visit rbc.com/royaltrust.

Thank you for joining us on this episode of Matters Beyond Wealth. If you would like more information about RBC Royal Trust, please visit our website at rbc.com/royaltrust.