How can data and community partners work together to shape the future of dementia care? In this episode of In Our VoICES, ICES’ Dr. Susan Bronskill and the Alzheimer Society of Ontario’s Christina Stergiou-Dayment discuss how partnerships, data analytics, and community-based data are improving support for people living with dementia and their care partners while informing the future of dementia care across Ontario and Canada.
How can data and community partners work together to shape the future of dementia care? In this episode of In Our VoICES, ICES’ Dr. Susan Bronskill and the Alzheimer Society of Ontario’s Christina Stergiou-Dayment discuss how partnerships, data analytics, and community-based data are improving support for people living with dementia and their care partners while informing the future of dementia care across Ontario and Canada.
Susan E. Bronskill, PhD is interim Chief Science Officer and a Senior Scientist at ICES where she leads the Life Stage Research Program. She is also a Professor in the Institute of Health Policy, Management & Evaluation at the Dalla Lana School of Public Health, University of Toronto. Dr. Bronskill is a national expert in health services research using administrative databases with a focus on older adults, pharmacoepidemiology and neurodegenerative diseases. In collaboration with policymakers and health system stakeholders, she studies transitions between health care sectors and focusses on improving quality of care, medication use, health services utilization and health care outcomes — particularly in people living with dementia from Alzheimer’s disease or other causes.
Christina Stergiou-Dayment is the Chief, Programs & Clinical Operations Officer with the Alzheimer Society of Ontario and is a Healthcare Professional with experience working across community, hospital, and long-term care sectors. Christina’s key areas of focus include healthcare management, program planning, partner engagement, and evaluation. Most importantly, Christina is dedicated to promoting client-centred approaches to care with improved health outcomes and increased quality of life.
Resources
ICES | Applied Health Research Questions | AHRQ
ICES | Dementia prevalence by FSA in Ontario
ICES | Profile of community-dwelling older adults with dementia in Ontario LHIN regions, 2007-2017
Misty Pratt
Dementia touches the lives of hundreds of 1000s of Canadians, affecting not only those living with the condition, but also the families, friends, and care partners who support them every day. Behind every statistic is a person, a family, and a community navigating a complex journey. On today's episode of In Our VoICES, we're exploring how data can help improve that journey, and how partnerships between community organizations and researchers are transforming information into action. From understanding who is living with dementia in local communities to identifying opportunities to strengthen care across Ontario and Canada. Joining us are Christina Stergiou-Dayment, Chief Programs and Clinical Operations Officer with the Alzheimer Society of Ontario, and Dr. Susan Bronskill, Interim Chief Science Officer at ICES and Lead of the Canadian Dementia Health System Performance Team. We'll discuss the role of evidence in raising awareness, informing decision makers, and ultimately helping ensure that people living with dementia and their care partners receive the support they need when and where they need it. Christina and Susan, welcome to In Our VoICES.
Susan Bronskill
Thank you. Happy to be here.
Christina Stergiou-Dayment
Yes. Thank you so much for the invitation.
Misty Pratt
So, Christina, to start us off, can you paint a picture of how the Alzheimer's Society of Ontario supports people at the community level, and where data fits into that work?
Christina Stergiou-Dayment
So, when most people think about dementia, they often think about memory loss alone, and what they don't always see is the incredible complexity that families are navigating every single day, like you mentioned in the intro. Dementia is much more than memory loss. It is a progressive condition that can affect thinking, communication, judgment, behavior, and their ability to carry out everyday conversations and activities. The symptoms absolutely vary from person to person, and it really does depend on the type of dementia that they're facing and the stage at which they are at. At the Alzheimer's Society of Ontario, our role is really to walk alongside the people living with dementia and their family. Through our network, or essentially our federation of 26 local Alzheimer societies located across Ontario we support individuals from the earliest stages of dementia, from cognitive changes through diagnosis, disease progression, all the way through end of life and bereavement when the person living with dementia does pass away. We provide first link care navigation, education, counseling, support groups, wellness programming, care part education, and thankfully, increasingly we are absolutely partnering directly with primary care hospitals, Ontario Health teams, and community organizations as part of a more integrated approach to care. Certainly, one thing that I know, having been part of the Alzheimer's Society team for almost 20 years, and as a social worker myself, providing frontline service once upon a time in a local society, dementia impacts everyday life of the families that we are providing support to. And so anecdotally, I know and my colleagues know that the work that we're providing does absolutely make a difference in the lives of those that we're supporting, but it is just that only anecdotally, and so what data does is it helps us to understand where we're actually making a difference from a systems perspective, and it really does tell us and help us to understand the questions that we have, such as are people finding us early enough? Which communities aren't accessing services? Are there inequities that we haven't even recognized? What happens after someone connects with us? What does this actually mean for their experience of the healthcare system as a whole? Are we in any way reducing care partner stress, and are we helping people remain in their homes longer for those who want to do so? And without relying on data, in the end, we are essentially, although we do have client feedback, we are relying on our intuition, and so it's harder to demonstrate the effectiveness in a more concrete way. And so this has been why our partnership with ICES really truly has been transformational. We can really use data to tell the story that we know has been the reality for decades of work that the Alzheimer's societies have provided.
Misty Pratt
Community organizations aren't always seen as data-driven, as you mentioned. All those frontline support services you're providing. I wonder, do you have to fight then for this? To fight for the for the data side of things, knowing that a lot of people do actually prefer to rely on intuition, prefer to rely on that qualitative piece. So, is this something that, on your end, you've had to do a little bit of persuasion to show how important the data is?
Christina Stergiou-Dayment
I would say both yes and no, and that's a great question. And what I mean by that is that I would say, and my experience has been that I think community organizations have actually, been data-driven for a very long time, and I know that when I started 20 years ago, we were talking about data from day one and and looking at data integrity and how to use the data and how to improve the data. I think, however, the difference is that historically we've collected data primarily to demonstrate activities. So, what I mean by that is, how many people living with dementia have we served? How many care partners are we serving? How many visits or interactions or support sessions do they have in you know in a quarter in a year? How many educational sessions took place? And we know that those are important metrics, and those were typically the only ones that were asked of us. And so, as time has progressed, it's become more important for us to demonstrate not just activity but outcomes, and that's where we've had to push a little harder to show we are not just a community organization. We, Alzheimer Society, we are in fact a health service provider. We are making a difference. It's just not about the activity measures. It is absolutely about the outcomes that we know, again, anecdotally from a historical perspective, we are making a difference, and then helping to leverage that data, recognizing that at a community level we don't have access to some of the data the way others do, to then try to push forward and say and generate legitimacy for ourselves as an organization and showcase the importance we have in community to support the overall healthcare system.
Susan Bronskill
Christina, just to add to that a little bit, like the counts of services that you were talking about, it's all very much internal data, but the impact of your organization is outside of what you would be able to collect yourself,
Christina Stergiou-Dayment
Exactly.
Susan Bronskill
And so that's where sometimes, like the partnerships we're going to talk about with ICES or other organizations, where there's that bridge to helping think about that outcome data, and not just the outcome data for the value proposition, but the helping think a little bit about comparisons and the like, how would you measure what would have been had your service not been available to people.
Christina Stergiou-Dayment
Exactly.
Susan Bronskill
And so I think I think that that's like a nice place where your objectives dovetail with the kinds of things that we do at ICES.
Misty Pratt
Yeah, that's exactly what I was going to ask. Was why is there that gap? Many community organizations don't have access to this type of data, so it sounds like perhaps it's in part the collection of that, of knowing what to to look for, knowing what to collect?
Susan Bronskill
You know, I think there are important data privacy challenges there too, Misty, to be thinking about data at the individual level, which is what's needed to answer some of these questions that Christina's asking. So, sending rates of hospital use for a region doesn't necessarily tie back to the Alzheimer's Society of Ontario the way them bringing a cohort of their data into us and us following the actual people that got their service and looking for outcomes.
Misty Pratt
You know, your work looks at dementia care across the health system nationally, not just provincially. So, why is it so important to connect that ICES data with what's happening on the ground in communities?
Susan Bronskill
So, I think I think there are two ways to think about that question. I think the first is that it helps us understand what's important to people with lived experience, so I can be sitting in my office thinking of something I think might be interesting, but whether that's really answering a question of somebody that's going going through dementia care and wanting to understand dementia care is one point. The second point is that the data that we hold at ICES are very broad, but not deep. At least the administrative data sets. So we have long data over time, we have encounters or services across some of the different sectors, like the hospital sector or the home care sector, but we don't often understand the why behind the patterns that we end up seeing. And so, I think it's also very helpful to be able to take those patterns back to community organizations and say, "This is what we're seeing. Can you help us think about the interpretation of this? Does this make sense to you? Is there something that's missing that we need to look at further?"
Misty Pratt
So, part of our Applied Health Research Question program, we call it the AHRQ program, which we will link to in the show notes so that you can read a little bit more about what this is. But part of that was something called the First Link Project, and this looked at what happened before and after people connect with dementia supports. So I know Christina, you mentioned that First Link. I'll start with you, Christina. What did you learn about those early touch points and why they matter for both care and the health system?
Christina Stergiou-Dayment
So I know Misty and Susan, you can see me sort of smiling and laughing, and this is by far one of my favorite projects. And so I'll explain why. And every time I talk about it, I do sort of smile because it has so much importance related to it. So to set the stage, though, I just want to describe briefly what First Link is, so we understand what we're referring to. And really, it is our care navigation program, and it's connecting people living with dementia and their care partners to personalized information, education, care planning throughout the trajectory of the experience with dementia. And we really do aim to try to provide support even pre-diagnosis to help link to the appropriate resources in the community, and then continue on throughout the disease progression. So we're really aiming to improve quality of life, reduce crises, which we know happens unfortunately quite frequently, and also help people remain again living in home in their homes for as long as possible, should that be their preference. And what I loved about this project was the fact that it started us on a new pathway of being able to describe the impacts of our programs and services. So, like I said at the beginning, we had had all this anecdotal evidence, but we really haven't been able to definitively leverage data to at least suggest the relationship of impact between our services and outcomes and experiences in the healthcare system outside of the Alzheimer's Society. So our project really endeavored to answer questions around: Does connecting people living with dementia and their care partners to our services actually make a difference? By linking our data to the ICES health system data, we were able to look beyond our own programs and see what happened across the system. And so we looked at healthcare utilization pre connection to the Alzheimer Society and then post connection to the Alzheimer's Society after a length of time. And it was really exciting because one of the findings that really stood out, although we can't say cause and effect, but just that there's suggested relationship that there were fewer emergency department visits following connection with our services, and there was greater use of family physicians and home care with hospitalizations essentially remaining stable. So that meant a lot of different things for us to consider. We know that one of the things we do is help support families to understand what to expect, how to communicate effectively, how to negate the potential circumstances that lead to a health crisis, etc. When to recognize when it's important to go to the ER, but also hopefully to have the resources so that when something that they historically wouldn't have been prepared for, they now feel resourced and confident to address. Their instinct isn't immediately to go to the hospital to have that addressed, but they also feel resourced and confident to go to their doctors and ask for help or to engage in home care because it's okay to ask for help. And so, it really helped showcase the value of community supports and services. And again, because we know that in the end resources are finite, we know that funding is limited. There's always you know the need for more, but certainly not enough to go around. We're able to then at least suggest that we are making a difference overall to the healthcare system. So, from a funding perspective, it legitimizes what we do. But then, on our end, from a delivery perspective and quality of life perspective, we know that we're making a difference because we currently, on average, serve about 65,000 people across the province every single year. So that's care partners and people living with dementia together, and we, on average, receive over 30,000 referrals from a variety of referral sources. So, the responsibility of ensuring that we're providing good service is important. We have a responsibility for due diligence, and also, of course, from a humanity perspective and an ethical and and all of those perspectives, we want to make sure that what we're doing is effective.
Susan Bronskill
I was going to talk about that because you making the statement early about you know cause and effect and how we we can't say that from the data. Poor Christina, Misty, got a little bit of a like ICES science 101 lesson as we were working through this project too, right? So you know, very happy we have such talented staff scientists and really skilled epidemiologists in ICES working on these questions and the issues. And you know, it's not up to Christina to know the the details of what's needed for study design, but it really helps to have those conversations because then it helps us to answer people's questions. And to be fair about what our value add is like that-that we we can't always make that direct connection, but that the signal is probably there to help with things a little bit. And then, as Christina mentioned, just going through the exercise with this first pilot project we did with them, with just a couple of the societies linking data was really helpful, and maybe Christina, you want to talk about this a little bit more. Really helpful in thinking about how you organize your data internally for when your next ICES ask comes along to help with that data flow and what kinds of questions we can ask.
Christina Stergiou-Dayment
The journey with data has included actually probably three prongs, and then it's evolved into other data sort of projects that we can speak to later. So the prongs are essentially number one: we recognize that in order to connect to the administrative databases, we needed to have a connector, and so we've done a lot of work to ensure that we're collecting fulsome data from our clients, which makes it much easier. Making sure we have standardized data being collected across our site, so that we have the identifiers needed within all the constraints of privacy and what have you, to be able to you know leverage the opportunity to link the systems. The other piece is that, as I mentioned, we are technically 26 independent locations that work together under an umbrella of service, with the Alzheimer's Society Ontario being sort of an enhancer, a coordinating office, a supporter to help the societies enhance the work that they're already doing so well. And that meant once upon a time, however, that every society had a different database, and so we went upon a project of onboarding our sites into a common records database. So we are now on one data platform. They're separate instances, but from the Alzheimer's Society of Ontario is now in a service provider position in the sense of helping to create the same infrastructure for all instances, and we're able to have access to provincial data, which creates huge opportunities to tell a much larger and representative story of dementia in Ontario for those that we do have connection to, and then a parallel process that was happening, but further enhances opportunity with data, is that we absolutely believe in health equity and access, and so we've done a lot of work to make sure that we are learning who our clients are in a much more detailed way, and so we know from a systems level that's really helpful for us to understand who we're serving, and then at a more micro level, we know that understanding who our clients are helps us to provide you know very customized, individualized care that is also you know for example, culturally sensitive, and so forth, and understanding the intersectionality that happens as well. I think the other interesting insights that I knew about theoretically, because I've been in the dementia space, I've been connected to community, long term care, and hospital. I recognize how the coding of visits and interactions with the health system matters, but it really became an interesting point to view it in real time. When I remember we were talking about the data outcomes and looking at, we know the people we're serving have dementia of some form. We know that when they go to their family physicians, they're not always getting an official diagnosis of the type of dementia. So dementia is the terminology we use for like the symptoms, but the cause can be Alzheimer's, as an example, it can be Lewy body dementia, so on and so forth. But many or a good number of clients that you know we knew were receiving service from us because they do have dementia. In the systems that Susan, you have access to, it wasn't really reflecting that they had dementia. So when we think about clients and funding decisions being made about the prevalence of dementia in the community and who's accessing service, it's not necessarily fully informed from that perspective.
Misty Pratt
This has come up in several episodes. The coding problems.
Susan Bronskill
Oh, if we could make a plea,
Misty Pratt
You can make it here if you want
Susan Bronskill
To update the diagnosis codes available in the physician billing data. I was actually talking to someone recently who was sort of asking a question along the lines of like, what would be the single thing that would help population-based dementia research in the province? And I think in the the hospitalization claims have more specificity, but for people who are out in the community, we rely on what gets recorded during physician visits, and we know there are a whole host of reasons why you know their cognitive impairment might not be recorded either because there's there's only space for one code to be recorded, because the coding system that's being used is old and a bit archaic, lots of reasons would have a huge impact on the kind of community. Some of the interactions we study between people living in the community and physician providers would make a big difference. You know, the one other thing that is interesting about our collaborations over time is, I think we first met and correct me, Christina, when you were a partner organization on the Ontario Neurodegenerative Disease Research Initiative, a former research program sponsored by the Ontario Brain Institute, and I was doing some research, and you know, having those kind of fora available, where partner organizations and researchers are meeting and maybe having a conversation during the lunch break about things, sort of led us led us along this path, such that you know we've gone back and forth a bit with requests for things too. In that you know another important initiative that the Alzheimer's Society of Ontario is working on at the moment is is related to considering a registry for people living with dementia, and because of our contacts around research and science and data, there are a handful of ICES scientists who are helping your team as you think about what's again what's going to be needed from a data collection perspective? What would be helpful for research? All of those kind of offshoots that came from you know, sitting at the same conference table together. So yeah, really a nice, nice to have these longer term relationships as well.
Misty Pratt
It sounds like that regular contact, the regular collaboration, is what is leading to some of the innovation.
Christina Stergiou-Dayment
It's really nice to be able to have the connection where you feel you can pick up the phone or just send off an email and say, "What do you think about this? or "How do we do this better? or "What are your insights? or "What are the implications in thinking about systems level data and access and all of the things?" and "Is there a way that we need to pivot slightly to make it more meaningful?" Or, you know, Susan is able to generate other ideas with her expertise to say, "Have you thought about it this way? Or based on this, you know, publication that you know Susan has had with her team, and so forth, you know, "Have you thought about this or that?" So, and you know, one of the data projects that I alluded to earlier is exactly that, the dementia registry, and so we know that there is definitely a need to have one central source of data related to dementia, and part of the pull related to that is the you know approvals of disease modifying therapies, and that we know in other areas where the DMTs, the disease modifying therapies, are available and paid for by the health system that there's typically a registry that's needed, and and that was understood through jurisdictional scans that we've had completed and so forth. And so, you know, in thinking about disease modifying therapies and thinking about the fact that dementia data is very fragmented, the Alzheimer's Society of Ontario, in collaboration with some of our local societies and the Ontario Brain Institute, really endeavored to collect standardized real-world data from people living with dementia and, in a future state, their care partners. And our goal is to collect a standardized set of data to really help inform systems health planning and to make sure that it's really representative of the realities of what the communities are experiencing. It also tells a story about who's gaining access, who is not, and one of our goals also is to ensure that those that are gaining access to the dementia registry are, in fact, those from health equity-seeking communities and so forth. Because typically, those are not the folks whose data is represented in some of the systems, including our own at the Alzheimer Society. And so, you know, in thinking about all of that and knowing the utmost importance of this, and especially too thinking about the projections, we know that you know, and in just under 25 years, the number of people living in Ontario with dementia is going to be three quarters of a million, and that's not considering the care partners associated and the impacts, you know, at a personal level and an economic level, and and just all the things. And so, you know, we immediately recognize that as we're thinking about data and we're thinking about what stories can be told to help inform all of this planning, we need to have linkages to that health system databases. Of course, it's an iterative process, and there's always going to be refinement. But how can we start off really strongly and yeah, essentially have that really strong foundation, knowing that the world of data moving forward in the space of healthcare is is going to be very different, and we need to keep pace with that and ultimately do better for the people that we're trying to serve.
Misty Pratt
So, how far away is that registry, do you feel?
Christina Stergiou-Dayment
So, the registry itself is underway already. We have over 250 people with their data in the registry relative to the number of people that had dementia. It's still a small number, but we are moving forward. I think one of the constraints like anything is funding. To support a registry well, there needs to be really significant, sustainable funding to do this. And so, in thinking about some of the work that my colleagues are working on in helping to support frameworks for dementia care in Ontario, the the advising around, we're hoping that this will generate further awareness of the importance of not only a framework for dementia care in Ontario, but also understanding the value of data in a you know a centralized place or way, and then yeah, it'll be interesting to see where it goes. But it's it's a it's really truly at the end of the day a necessity, and especially with the the guardrails in place, and leveraging the expertise of health equity experts to really make sure that health equity is not you know a consideration after the fact, but embedded in the entire process. And so that's part of the work that we're doing right now with our advisors and with our team and so forth.
Misty Pratt
Let's talk a little bit about care partners because they're such an important part of dementia care. So, what did the data then help you better understand about their experiences and needs?
Christina Stergiou-Dayment
We know right off the bat that care partners have a whole bunch of responsibilities, all the way from you know serving as a navigator themselves as they're trying to you know figure out where to go next with respect to seeking service for their family member, we know that on average the data is telling us that they provide on average 26 hours per week of support that is unpaid, and we know that as the disease progresses, it can be upwards of 40 hours a week. And when you think about that, that's a huge responsibility. And so,
Misty Pratt
That's a full time job.
Christina Stergiou-Dayment
It is a full time job- plus, depending on the type of dementia, the stage, and so forth. And so, what was interesting is that the data did tell us that once the care partners had connected with the Alzheimer Society, their use of medications had increased. And so, while many other other health system measures remain stabilized, and so that was interesting to us because one of the things that the Alzheimer's Society strives to do is really underscore the importance of the care partner taking care of their own health and connecting with their physicians, and you know it's the analogy of put the oxygen on first for yourself for before you apply to others, and it's so true for care partners as well. And many are just going minute by minute, day by day, trying to figure out how to provide support, and they're not thinking about themselves, and so their distress is increasing. Their stress is increasing. Things like hypertension start to skyrocket. They start to become, you know, just overall more unwell for a variety of reasons. And so it was interesting, again, could suggest that that underscoring of the value of their own health and and taking care of themselves for their own benefit, but also to be able to care for the person with dementia, is that they need to be connecting in with primary care providers and and other health practitioners to help support their their well being, and so that is something that that data told us concretely, and it mirrors very well data that we get from clients directly. So every year, as part of our reporting responsibilities to the Ministry of Health for First Link Care Navigation, we have an annual survey that we distribute to care partners and people living with dementia. We have, on average, about 4000 respondents, and through that survey, we ask a number of questions about impacts. Again, it's it's subjective and all of the things, but we ask for perceptions around have we helped them to take better care of themselves and their confidence and their well-being, and also have we helped them to avoid or not attend the ER for avoidable reasons? And so, the message loud and clear comes out in many of the cases. Yes, the information, the education, the encouragement to seek service at a primary level, etc. is helping to avoid crises, acute care interactions, and so forth, and that started to see some semblance of that in some of the ICES data that came out of our project. And so it'll be, I say, fun to explore that further when we are able to leverage more data from our common database in the future.
Misty Pratt
So interesting because when I first heard it, I thought, oh, more medication is bad, but not necessarily. It's if you are needing medication and then not taking it because you're you know you're not paying attention to your own health, then that would be a negative.
Christina Stergiou-Dayment
Exactly, and that's very much a very common theme. Unfortunately,
Misty Pratt
Yeah, I've heard it from caregivers who are friends of mine who say it's so hard to find the time to to take care of yourself because it's so intense. So your second AHRQ project, we talked about the first. Now I'll talk about the second. So that mapped dementia prevalence at the neighborhood level. Why does having that kind of local data make a huge difference?
Christina Stergiou-Dayment
It was really powerful. Because typically speaking, dementia is not visible. People hear about it. We know there's stigma associated with it. If you're impacted or affected by it, you know it exists. But the people that are making decisions about dementia, or the people that have influence with the people that make decisions about dementia funding, often don't really understand the numbers in a way that's meaningful to them. So what I mean by that is that they want local data. They want to understand what does dementia look like in my community. And so, in leveraging the information through the AHRQ project to get the you know the localized data at a neighborhood level, it did just that. It gave us an understanding of how many people in my community have were impacted by dementia, and then we were able to leverage that with folks like Ontario Health and the MPPs and and all of that, and we ourselves too were able to leverage that funding because it tells us the variance of dementia in areas within Ontario. And so, as an example, as part of the dementia strategy, gosh, now almost a decade ago, the Alzheimer's societies received base funding for care navigation across the province, and you know it was in addition to existing resources that we had at the societies, and we knew that demand was increasing, and then we were advocating for increased funding for more navigators and leveraging this type of data helped us to understand. Yes, we know we need more, but it helped us understand how much and where. And so, our ask to the ministry was very customized, using this data to be able to say this is what we need, and it was hugely beneficial to us because we were able to then advocate for this funding, and we're successful in getting base funding to literally double our care navigators across the province, and so, and it was informed. You know, each society has a minimum of two, but others with higher demand and people living with dementia in their communities received more. And so, it wasn't a guess; it was informed from this data. So, that means obviously a lot to our funders. It certainly means a lot to us as we think about you know strategic planning and funding, and then when we think about communities, it helps them to understand what they could do differently and what they need to prioritize from an advocacy perspective and so forth.
Susan Bronskill
I think too Misty and Christina, that that kind of analysis dates back to the origins of ICES because those were the kinds of things we initially were able to do. So it, you might have heard people talking about small area variation or very geographic variation analyzes and things like that. And so in the very early days of ICES, when I was a let's just say under undergrad, and then maybe a graduate student. You know, there were these these practice atlases that came out following a model that had been implemented at Dartmouth University, showing rates of surgeries across the province and how rates of surgeries varied more than you might expect given the underlying populations, so what else was going on that a surgery rate in one region would be low and another would be high, but it helps to emphasize how sometimes the very simple analyzes that we can do at ICES are actually very helpful. So I think sometimes when we're talking to grad students and they want to do a big model and control for everything, and you know, it's always really helpful to just look at the initial patterns in the data and to understand, you know, in this case, it was where are people living with dementia? Where where in the province are they located? You know, we're extending that concept a bit with the new Canadian Consortium for Neurodegeneration and Aging team grant that I have to kind of start to look at okay, we know the prevalence is different across regions. How does that map to service use? How does that map to outcomes, and can we say anything about some of those population-based trends at a at a national level? And it's not it's not fancy regression models. It's just displaying data and getting data into the hands of people who might need to see it. And I think that AHRQ of you know a simple analysis like this, having multiple uses for Christina and her team, is is very rewarding.
Misty Pratt
You led perfectly into the next question about your grant and about what this means for measuring and improving quality of care all the way across Canada?
Susan Bronskill
You know, as data literacy and population-based data literacy increases nationally, organizations like Health Data Research Network Canada are helping to connect researchers with available data in different provinces, and so that really lets us do these variation analyses at a national scale. So, you know, within Ontario, we can divide the province into regions and compare different regions to one another. But I think for some of these these core services or core data holdings that we know are held in other provinces as well, it's helpful to start moving that needle along and then putting that data somewhere as well. So part of what we're planning to do with our grant is not just run similar quality metrics in individual provinces, but hoping to bring them all together on a simple website dashboard, so that then you can start to see, you know, are all the rates the same? Are there some provinces where certain kinds of service use is high and low? And can we link that? You know, oh, what do we know about the health policies in those provinces that might be tied to whether is is high good, is high bad? Like you were saying related to the medication use, and so I think by doing that repeated comparison work, it really helps us support Canadians living with dementia nationally.
Misty Pratt
When you combine the community level insights that we've been talking about with that broader system data, how does that strengthen then the case for better supports and funding, Christina, as you've been talking about, and then policy change as well?
Susan Bronskill
The policy change piece has so many different political windows that open and close, and sort of timing of things for policy change is often very important. It is really helpful to have those base data available for people when, when thinking about it, like the next 10 years are probably quite transformational for dementia care, in terms of some of the new drug therapies that are becoming available, and biomarkers to identify dementia and at what stage it gets identified, and is that in a specialist clinic or is that in a primary care practice? So, lots of maybe for we'll call them new technologies coming down the pipeline with varying degrees of effectiveness and approvals at the national and provincial levels. But sometimes the shiny new thing draws all the attention from a policy perspective, and a lot of what Christina was talking about earlier in our conversation were the supports that family needs, and the things like like home care and support in the home, and so the policy change conversation gets tricky because you want to be able to adopt the new technologies might be very expensive, but it's that at the expense of expanding or depleting the existing home care resource. And so again, it just helps to quantify all of this stuff and have some initial models to kind of consider some of these different scenarios.
Misty Pratt
Do you feel like it's the people who are suffering from dementia and their care providers who are looking at the shiny new thing and getting excited, or is this is this the general population that's like getting on board with, as you mentioned, the new drugs that you know everyone in the media is kind of all over it, and we hear about it everywhere. So, but is it actually the people you know with the lived experience who are pushing for that?
Christina Stergiou-Dayment
Without a doubt, people living with dementia like to have options for them to consider the risk benefit and to make the decisions that are most relevant and helpful to them. And so, we know without a doubt that there are many people living with dementia in Ontario who absolutely are very excited about disease-modifying therapies and you know other opportunities to help support diagnoses and so forth. And so, yeah, I think the shiny new can provide hope, and you know hope is really really important. You know, in the context of what essentially is terminal illness, and the opportunity to get some time back, potentially in the sense of you know slowing progression, is huge, and everyone's going to quantify that and look at that through their own lens of individual values and so forth. And so, for us at the Alzheimer's Society, it's really you know us doing our due diligence to engage with lived experience and to have the voice of their perspectives. And again, it's all about choice and opportunity and continuing to advance at the end of the day, hopefully one day a cure. But it's also keeping in mind that the shiny and new is important. Disease modifying therapies are important, of course, but they only are suitable for a subset of people, particularly those with Alzheimer's disease. They need to be in a certain stage within the progression, so on and so forth. And so, a lot of the data and thinking about home care and things like that, we still need to be leveraging all of that to inform the experience of living with dementia and the and the families of those living with dementia, to inform the services and the supports that are still needed for the plethora of others that disease modifying therapies are not relevant. So it creates that energy of hope. It creates awareness. Even people not impacted might have some excitement, but certainly those where it has the most relevant, they're going to be most excited about it because again, hope matters. And you know it's a a beacon of hope. You know, in the larger picture.
Susan Bronskill
And helpful to talk about too from a a system planning perspective, right? So, if the new potentially disease modifying drug therapies are used, there's some significant monitoring that has to go on with them, which is often imaging to to look for very rare but very serious adverse events, and so that can add cost to a public health system as well. And so, you know, we've been trying to think a little bit at ICES about how we can help, what sorts of scenarios we can build with the data that that we have available to us, that might help people understand the implications of some of those trade-offs too.
Christina Stergiou-Dayment
I think the other piece about data that's really helpful is it does help to tell the larger story, and we know that timely access to supports also makes a difference because when the supports, the access, you know, even to getting a diagnosis in the first place. The costs are exponentially higher when crises ensue, as opposed to getting the proactive interventions and support early on. And so the data can help there as well, and also the comparative data can perhaps shed a light, you know, as to efficiencies within certain, you know, sectors or across, you know, different provinces, etc. Because, you know, again, there are finite resources. We know that that's just a reality. But can there be efficiencies that are gleaned that can help leverage the finite resources in a way that is optimized, as opposed to, you know, you know, from a lean methodology perspective, essentially wasting some of the funding in ways that could be better leveraged.
Misty Pratt
Okay, final question for both of you, which is, what's next for your collaboration together, or maybe separate?
Christina Stergiou-Dayment
Yeah, I would say that transformational is really the reality. I feel like dementia care is in the space of transformation. I feel like society in general, as you know, referred to you know we're thinking about digital health advancements. We're thinking about you know AI advancements. We're thinking about the fact that community care is being recognized more often and being included in more of an integrated care model, so that creates so many opportunities for us to to work together. And you know, again, the dementia registry is really one set example, and I think that our partnership and the continued engagement will continue to grow. And I mean, at the end of the day, I would suggest, and that's what I think ultimately makes this a really exciting and rewarding partnership, is the fact that I would suggest. I mean, we have a variety of goals, but I think we have one common goal that is really we are trying to make a difference in the context of the dementia space and improving the lives of people who are affected by dementia, and so you know, working together, refining practices, thinking about innovation, challenging ourselves to do things differently-it's all just really exciting.
Misty Pratt
Absolutely, it sounds very exciting.
Susan Bronskill
You know, having Christina and her colleagues for me to bounce ideas off, or it was a former colleague of Christina's who actually taught me how to how to pitch people in government when I was talking about our research findings. Because I had was giving a very quick presentation, but I had sent my slides to him in advance, and they were set up in the traditional academic style of like, here's my introduction, here are the methods, and he flipped the whole thing to be leading with the main finding. And then, if there were questions about the methods and the background, that could could happen. But I think I think that that that kind of cross pollination, I'm hoping, will continue on all of these new challenges that Christina talked about.
Misty Pratt
Sounds like that mutually beneficial relationship of the researchers learning from the community organizations and vice versa too. Well, thank you both so much for being here today. You know, I feel very confident after hearing you talk about your work that you are making a difference already, and I can see in the future that you will make an even greater difference. So thank you.
Christina Stergiou-Dayment
Thank you.
Susan Bronskill
Thanks for having us.
Misty Pratt
Thanks for joining me for this episode of In Our VoICES. Check out the show notes for links to research and any other information that we've referenced in this episode. A reminder that the opinions expressed in this podcast are not necessarily those of ICES. Please be sure to follow and rate us on your favorite podcast app. If you have feedback or questions about anything you've heard on In Our VoICES, please email us at communications@ices.on.ca and we will get back to you. All of us at ICES wish you strong data and good health.