Dr. Thomas Tannou, Institut Universitaire de Gériatrie de Montréal: Dementia Research is Informing New Approaches to Care

Van Ton-Quinlivan

Hello, I’m Van Ton-Quinlivan, CEO of Futuro Health, welcoming you to WorkforceRx, where I interview leaders and innovators for insights into creating a future-ready workforce.

As we have discussed on this podcast before, steadily rising rates of Alzheimer’s disease and related dementias pose significant challenges for professional caregivers and family members alike. In a future in which nearly everyone will know someone affected by dementia, being able to recognize warning signs, and understanding the progression of the disease will be increasingly important knowledge.

Fortunately, research is being conducted by today’s guest, Dr. Thomas Tannou of the University of Montreal that is helping to provide insights into early indicators of disease onset and the capacity of older people living with cognitive impairment. I met Dr. Tannou this summer while we were both at the G7 Canada Brain Economy Summit and learned so much about the biomarkers and how to think about serving the health needs of those with dementia that I really wanted to have our listeners to have the same opportunity to learn from him.

Thanks very much for joining us today.

Dr. Thomas Tannou

Thank you so much for your invitation. It’s my pleasure to be here today.

Van

Well, let’s start by having you give us an overview of your research in this area and what drives your work.

Dr. Tannou

So, I’m a clinician and scientist, so I do research which is based on my clinical focus. I practice in my memory clinic for half of my time, which leads me to see a lot of needs and gaps that are not currently answered in research and practice.

One of my main issues is the fact that many patients living with Alzheimer’s have what we may call in medical terms anosognosia, which is the lack of self-awareness. So you don’t perceive yourself as someone with a memory disease and so based on that you don’t see the point on having treatment or having home support to help you to age in place.

Van

So, lack of self-awareness, that’s a real challenge if you’re not aware that you need the treatment. And so the burden would then fall on your family, I would imagine, to be able to provide you with the support that you need.

Dr. Tannou

Yes, it’s currently a real issue because if you don’t perceive that you lose your memory, basically if you forgot that you forgot. So you will not be aware that you need to go on a path to be supported. And because of that, you may go to memory clinics too late to have efficient care to reduce the evolution of the disease.

And so yes, this leads to some dramatic situations where you can have kind of refusal of care at the very biggest situation or at the minimum, opposition. The family needs to have a lot of negotiation for acceptance of services and treatment. So it’s really an issue and we need to work on discovering this as early as possible to make sure that we will increase acceptance of services and treatments.

Van

So many of us, if we want to be in control of our situation, we’d like to know the timing. When is it not too late to move into a facility? I wonder what your research is telling us about managing self-perception and knowing when are the early indicators to begin the transition.

Dr. Tannou

I think we need to perceive Alzheimer’s disease not as a memory disease, but a disease of adaptability. Yes, it’s a memory disease, but a memory is not the same thing as remembering. It’s indeed a memory disease in the sense that you cannot retain new information. You have the remembrance of things in the past but you cannot fix the new information and if you cannot fix the new information then, in fact, it’s not so much a memory disease but more a disease of adaptability. You lose your capacity to adapt to new environments because you cannot memorize things that are new.

So for that, we need to consider two things. First is that routine is okay because you don’t have to memorize new information if something is a routine. It’s really helpful if every morning I take my glasses from the same place. I don’t have to look and to try to remember where are my glasses.

The second thing is it’s sometimes very difficult to have solid information about the real needs of the patient because the person says, “I have no problem. I take my shower every day.” But the support person — for example the family caregiver — will say, “No. She only showers once a week.”  You have this discrepancy between what is perceived by the patient and what is perceived by the caregiver. But sometimes what the caregiver says is not accurate because he’s not there every day at every moment. So my research tried to see how technologies like smart homes and sensors, can be informative to decide when people really need support and to increase acceptance of services.

Otherwise, if you consider Alzheimer’s disease as a disease of adaptability, as mentioned previously, you understand that the principle of aging in place as long as possible — which is very often what we recommend in public policies — is not the right idea because aging in place as long as possible means that when the person will be in a late stage of the disease with less ability to adapt, you will ask this person to adapt to a new environment.

It’s preferable to consider that if you already see that you don’t have the capacity to support aging in place until it transitions to dying in place, if you see that you don’t have family support for many reasons, if you don’t have the architecture — for example, so many steps within the house — that it will not be possible to stay until the end, then it’s probably preferable to think about relocation as early as possible to be able to make sure that you can adapt to the new environment. Does that make sense?

Van

Yes, this is such a big point and one that really opened my eyes when you had shared it with me in Canada. You were basically explaining that with dementia, for example, it’s a disease of short-term memory, right? That’s why you cannot adapt. And so don’t wait till the last minute to move your parents into the facility because they can’t establish the new routine because they don’t have the ability to create that memory.

I was wondering if you can expand on this. So, if you need to move earlier versus too late, then what’s an early indicator of when you should move?

Dr. Tannou

That’s really a good question. Thank you for that. I guess there is no one unique answer to that. When we first discussed this, we had this conversation based on mobility issues. And we very often forget that we have only one brain linked to one body and so we cannot dissociate, for example, mobility issues from cognition. What we know is we call it Motoric Cognitive Risk Syndrome. It’s a syndrome that has demonstrated that, for example, reduction in the gait speed is one of the early indicators of cognitive decline because doing many things at the same time starts to be more difficult for the brain, and gait control is doing many things at the same time.

When you start to have some preoccupation on just thinking, you know, my brain is not working as it was working before, it’s time at least to think about the screening. Many, many, many reasons can explain why you don’t have your full cognition capacities. It can be depression, it can be age, even if we try to say that aging is not a sufficient reason to have any cognitive issues, but when you age your brain decreases some capacity. But it can also be the beginning of a neurodegenerative disease.

If you try to have an assessment, and say okay, you know, I think my brain is not as it should be, then it’s possible by now to have some clinical biomarkers — like gait speed and cognitive tests — but also some blood-based biomarkers. But we have to do this only if we have some cognitive issues or complaints because of course we will not just test all the people in the US, Canada and so on, but when you have the first complaint we can do this type of blood test. The we can provide support early, and now with innovation in medication we can also have early treatments that can be offered in some specific situations.

Van

That’s fascinating. So if we’re having cognitive complaints or our loved ones are having cognitive complaints, that’s when we should go in for this screening and assessment. You mentioned that the assessment and screening is a combination of the gait speed, the cognitive tests and the blood work. And that gives us a profile of how long we have or what kind of medication that we can go on to slow down the speed of the cognitive decline?

Dr. Tannou

Yes. I should mention that we also need to have, of course, some neuroimaging, so MRI or CT scan. When we are talking about the brain, we need to look at the brain, of course. But based on all this information, we are able to say, yes, you are probably in the beginning of a neurodegenerative disease, or to say, no, you don’t have at this stage any signs of neurodegenerative disease, which does not mean that you will never have any later, but you can be reassured now and you can work on other approaches.

Van

So, if you are at the beginning of the neurodegenerative disease, then the decision is, I age in place and die in place, as difficult as that discussion is, and if I can’t go all the way to the end of being able to die in place, then I need to actually make a transition and do it earlier versus later. Is that how we should be thinking about it instead of just thinking we can move later?

Dr. Tannou

Yeah, you know, the way you mention it, I think it’s very interesting. Yes, it’s a difficult discussion to have, but probably preferable to have a difficult discussion than to not have a discussion and then just to have to deal with the consequences.

In addition to the medication we briefly talked about, it’s also possible to support cognition by a lot of non-pharmaceutical approaches. It’s possible to have more physical activities, to have a better diet, but moreover to have social participation. Increasing social participation stimulates your brain, your social interaction stimulates your vocabulary, your memory. If I don’t remember who you are, it will be difficult to discuss. If I see my neighbor she says, ‘I’m very anxious about my daughter, she’s at the emergency department,’ then the next time I see my neighbor, it will be appropriate to ask, how is your daughter? Increasing social participation is really the key. And it’s also okay to make sure that you have something else to mention than your disease, for example, to say, I went to a music concert yesterday. That’s great because it creates conversation and it helps to be integrated within the society. Considering relocation, it’s very important for that because social interaction may reduce if you age in place.

Van

A question I have for you on the social participation is, could I get onto a Zoom call and hang out with friends in a virtual environment? Is that considered social participation or should I physically go to the neighbor’s or the friend’s place to have coffee…physically move there and be with them?

Dr. Tannou

Social participation will still be social participation even if it’s virtual. But the good point with social participation is that it supports the other things. Because if you go to a coffee to see friends, then you will have to have your physical activity. So you will walk and you will eat with your friends.

I say to my patients, we are social animals. Regarding the animal side, we can eat, we can do physical activities and so on, but because we are social animals, having social participation will increase the more biological side. It will help to maintain this physical and nutritional approach.

Van

So earlier on, you talked about routine and how that is going to be really important for later on when we lose our capacity for short-term memory. Should we be developing patterns of routines of diet and physical activity and social participation once we get a sense that we have some cognitive decline?

Dr. Tannou

Yes, and what is interesting in routine and cognitive decline is that we know now from a lot of research on neuropsychology and occupational therapists and so on, that it’s still possible to learn a new routine even if you start to have some cognitive and memory decline because it’s not the same type of memory and so learning with errorless strategies is still possible. So, we can learn routines even with some level of Alzheimer’s disease.

Van

Before we transition into the discussion about technology and how that’s being used these days to aid in this area, are there any other biomarkers that caregivers and loved ones should look for?

Dr. Tannou

Yeah, very often caregivers start to help naturally. For instance, I will support my mother to do the taxes because it’s quite complicated and now it’s all on the computer. Okay, fine…but was your mother able to do the taxes by herself? If yes, why suddenly do you need to support that? This is an early alert. Don’t wait until she’s not able to choose the right dress to consider that this is an alert. Once you start to need to provide some suggestion for cooking or suggestion for anything, just consider that it can be a form of agism to say, yes, this is just because she’s getting older. No, that’s not true. If the people you take care of start to need your assistance while they were independent previously, just consider the question of why am I now starting to be involved?

Van

That’s a good point. If they were doing certain tasks and processes on their own before, and then all of a sudden you need to kick in, especially the cognitive ones, that may be an indicator, or least we should pause and think about it.

Dr. Tannou

Yes.

Van

So at the G7 Canada Brain Economy Summit, you were also talking about the timing, and I think I want to revisit that. If someone is beginning to have cognitive complaints and then you have an assessment and it is determined that it’s the beginning of the disease, is it a two to five year window in which the disease may fully manifest? What is your guidance there?

Dr. Tannou

That’s a very good question because it’s so complicated. We need to understand that when we talk about dementia and when we talk about Alzheimer’s disease, we are not talking about the same thing. Alzheimer’s disease is a biological disease that leads to some neurodegeneration and leads at the end to some clinical manifestations.

Alzheimer’s disease, biologically speaking, can start probably around ten years before the late stage. That’s why I mentioned previously that it can be inappropriate to do biological testing of Alzheimer’s disease without any clinical sign, because if you’re biologically positive, yes, obviously you will at some point start to develop clinical manifestation of the disease, but if at this point it is ten years, how do you deal ethically speaking and clinically speaking regarding the fact that you may develop in ten years a disease that will have ten years of clinical manifestation. So we need to be careful about this reflection about timing.

So, we have a long period of silent clinical evolution. Then we have the first clinical sign, about just the memory complaint and we call it subjective memory complaint because when we do testing it’s normal. Biologically speaking it’s not, but when we do testing all the clinical assessments are fine maybe except some very early signs such as gait speed and so on. That’s why I mentioned it.

And then because the disease still evolves, you have the mild cognitive impairment phase where you have this cognitive decline that can be seen on some cognitive tests, but you’re still fully functional. And then we have what we call dementia, which is when the progression of the disease impacts your functionality. But you can also have dementia for other diseases than Alzheimer’s, and you can have Alzheimer’s without being yet in the stage of dementia.

Van

That’s very helpful to understand. It’s good that we have clinicians like you researching this area and explaining it to us laypeople. Can I ask you, Thomas…in the United States, the whole country is aging and I’m sure this very similar demographics in Canada and in most parts of the world. Knowing what you know now, what is your recommendation for building the proper care workforce as the country ages?

Dr. Tannou

This is a very large question, very difficult to answer. We need to consider neurodegenerative disease differently. We need not to consider the loss of capacities. We need first to consider that we have to support individual people that need us to respect their dignity.

One thing that is very important when we consider ourselves — and I don’t know for you, but on my side I like taking some moderate risks. An example of risk that I like to take is skiing. You know, I live in Canada so obviously we have snow during winters and I really like skiing. But when I go skiing with my son, for example, the way I try to control the balance between speed and capacity to stop to make sure that no one else will be in danger is not the same as his. He’s ten, my son. So the way I deal with risk and speed will not be the same if he is going at the same speed as I am. He will probably not be in control of the risk.

One task that we have as healthcare professionals is to try to control the risk. We try to make sure, what is my responsibility if the patient falls? What is my responsibility as a clinician if….and you can imagine there are a lot of possible ‘ifs’. So, we try to reduce the remaining autonomy of people because we want to balance the risk. We think a lot about safety. Even the industrial partners that try to develop some technologies to support aging in place will very often put the emphasis on, ‘this is better for the safety of your mother, the safety of your patients.’

And of course, we care about safety, but as individuals in our daily living, we want to find the right balance between what is appropriate risk and what I have fun with, and what is inappropriate risk because I don’t perceive my own limitations. I really think this balance is very important for the workforce. Otherwise, if we just consider the incapacity and the risk, there is no point in aging. So you have too many risks of falling, too many risks of forgetting something in the oven, etc,  What’s the point in living to be old if you have all these barriers? So, we need to find a way to better deal with the acceptability of risk.

Van

And are there technologies that help us kind of bridge those two and allow autonomy yet deal with the fear that the ones that we’re caring for will fall or forget or hurt themselves?

Dr. Tannou

A lot of technologies are currently emerging on that market because it’s what we can call the ‘silver economy.’ It’s an area of expansion of a lot of companies. But only a few of these technologies are really designed to support autonomy in terms of decision-making capacity. Autonomy is not independence. Autonomy is capacity to decide for yourself. I mean, I’m working with different companies on research projects to try to have interfaces and applications that are primarily designed for older adults living with cognitive impairment and having caregivers as users, but the primary user has to be the person living with cognitive impairment, to increase social participation, to increase out of home participation. If we have any worries about wandering, for example, we can use some GPS technologies and so on,

But we have to consider that it’s a question of privacy and balance. We don’t have to have the information ‘where is my mother right now.’ We need to have the information ‘does she need my assistance because she is lost.’ But if she decides to go to the pharmacist and then to see her friend Janine, that’s fine. It’s not our business, it’s privacy. We just need to make sure that she is safe. So we need to balance the information and to make sure that we respect individual rights when we develop technologies. It’s not just about surveillance, it’s about dignity.

Van

That is a very good point and a good reminder of the boundaries of ethics and function. How do we support the gap between research and clinical practice to support aging in place for those with cognitive impairment?

Dr. Tannou

You know, we have a lot to do in making sure that we will be able to have transition of knowledge from research to clinical practice. We need to increase the way we translate information from research to clinics, but we probably also need to make sure that all these innovation are made to answer to clinical needs. If it is just because I think this is a good idea and I develop my product, I’m not sure it will be very helpful. So co-building, co-construction with primary end users, but also with healthcare providers from the beginning of research and development projects —  in academics but also in industrial dynamics — it’s very key.

As clinicians, as scientists, we are very pleased to work with industrial partners to help to provide the right knowledge to support the development of a technology and then to help to prepare to welcome this type of innovation. But this can be made only if we have from the beginning of a development of a project of an idea what we call a ‘living lab’ in research. So a living lab dynamic where everyone comes together and the needs of the end users and capacity from the developers can be mixed together.

Van

As a case in point, we’ve learned so much just doing this podcast about all the misunderstandings about the benefits of aging in place, and you’ve already clarified when and where that should happen. So, I can imagine a lot of products being developed and marketed without the involvement of clinicians that people will buy because they’re concerned about their loved one falling, for instance, even though the products are not backed by clinical evidence.

Dr. Tannou

It’s really an issue and I mean, I’m absolutely not saying that products currently on the market are not fine. It’s not what I’m saying. But I’m saying that we need to make sure that we work together because at the end, we all want the same thing. If we go back to the question about aging in place, it makes so much sense to be able to age in place from the beginning to the end and technologies are very useful for that. If you have the right sensors that can be there to tell you, do you need support to cook? I mean, now with chatbots and AI strategies and AI agents and so on, we have so much capacity to support aging in place.

We just need to make sure that we will do it in a way that is the way that people need, in the way that is fair.  I worked with Amy Hwang, one of my colleagues and previously postdoc, on an article that we call Co-creating Humanistic AI Age Tech because we need to consider the future of technologies. When we talk about smart homes, for example, it’s not just a few sensors. Now and tomorrow, smart homes will be able to interact directly with people, which is great in a way to support aging in place — to support routine, as we mentioned — but we need to make sure that it’s developed in a way that really answers the reality of people with Alzheimer’s.

If you just say you forgot your medication this morning to someone who is absolutely sure  they have taken the medication, you will just create conflict. So, it’s all the framing that needs to be co-built with people with experience, and it’s very important to have this interaction between industrial partners that develop products and people with lived experience to have better products to serve the purpose.

Van

To make what you’re explaining real, I remember a mentor of mine who was an only child. He was his mother’s caregiver and he worried very much whether or not his mother was eating or had even left the house, which was very complicated because he has his own family to care for and she wanted to stay in her own place. So, I would imagine that some of these smart sensor technologies could be of help in giving him some visibility, but then there is the limit of, as you mentioned, how you honor the dignity and autonomy of the individual, but you’re there for the preventive or the crises.

Dr. Tannou

Yeah, and it’s when I mentioned previously: we need to have the right service at the right moment. This type of technology now is ready to inform us if someone had regular food or not. When I mentioned anosognosia — this self-awareness impairment phenomenon — if based on sensors that give a better view of routine, it will probably be easier to offer the right service at the right moment because we already have the information. Based on that we will probably —  it’s the topic of my research to see if it works —  but we hope that we will increase acceptability of services because if we can see that the natural routine of someone is to take a shower at eleven in the morning, we will not provide the service at eight because for sure it will be refused. But if we provide the service at eleven, we may increase the acceptability. You know, a smart environment is not just about having smart technology. It’s how technology fits with the human environment.

Van

So let me close, Thomas, by asking you what makes you optimistic about the future of care, especially for people who are aging?

Dr. Tannou

You know, this podcast is a great example of the fact that we are starting to be aware about what we have to consider. And I really think because of that, we are on a dynamic where we have new things to offer. We have new treatments, we have new technologies, we have new healthcare organizations because we better understand how to work together. We also, because of that, having less agism, I hope, and can be more inclusive of people living with any kind of condition. So, because of that, I think we will be able to be more inclusive, having better social participation and so at the end, better support aging.

Van

Thank you very much, Dr. Tannou, for being with us today. Your work makes me much more optimistic about our aging society. So, thank you for your work and your research.

Dr. Tannou

Thank you so much for having me.

Van

I’m Van Ton-Quinlivan with Futuro Health Thanks for checking out this episode of WorkforceRx. I hope you will join us again as we continue to explore how to create a future-focused workforce in America.