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Alya Niang

Three-quarters of a million. That’s the number of Canadians who are living with Alzheimer’s and other forms of dementia. And 1.7 million. That’s how many more Canadians are expected to develop these brain diseases in the next 25 years. These are scary numbers, especially when we’re talking about conditions that have no real treatments and certainly no cure.

On today’s episode, the results of a unique first-time analysis that tracked the trajectory of Canadians in the 5 years after their diagnosis of dementia to learn about what services were most used and needed, finding that over half of those with dementia need home care and that almost half of unpaid caregivers suffer high levels of stress.

Isabelle Roberge

“It’s really burdensome for the caregivers, in spite of having help. It’s a concept called ‘shadowing.’ They ‘shadow’ their person, their primary person.”

Alya Niang

You’ll hear about the trajectory of Isabelle Roberge, who, along with her sister, helped their mother look after their father for 9 years. The report is called A Step Toward Understanding ������ϱ� Care Trajectories of People Living With Dementia.

Hello and welcome to the Canadian ������ϱ� Information Podcast (CHIP), the platform that brings you real experiences on health topics that matter to all of us. I’m Alya Niang, the host of this conversation.

A note: The opinions expressed here don’t necessarily reflect those of CIHI, but it is an open discussion. And this one is about the journey from dementia diagnosis through the health care system.

Isabelle Roberge

“So, we were able to have a social worker come to the house each month to see my mom and dad, see where things were at, evaluate my dad in terms of how the disease was progressing.”

Alya Niang

What works, what doesn’t and how to improve the services for the thousands of Canadians who will need them.

Hi, Isabelle, welcome to the podcast.

Isabelle Roberge

Hello, Alya. Thank you.

Alya Niang

So, Isabelle, when did you learn that your father had Alzheimer’s disease?

Isabelle Roberge

Yes, we found out almost 9 years ago now. My dad was 75 at the time, and it was my mom who got the news from the doctor, and then she had me and my sister come over to talk about it.

Alya Niang

And what was your reaction when you realized it was dementia?

Isabelle Roberge

Well, at that point, honestly, you know, you live from day to day, we obviously suspected something was going on, we knew he was going to have the test. I’d say it didn’t come as that much of a surprise, but you’re not prepared at that point either for how the years are going to unfold. I don’t think we were downplaying it at all, but we just didn’t understand what we were going to be dealing with.

Alya Niang

Isabelle, part of the reason we’re doing this is because the report talks about the trajectory of dementia, because once you open the door to dementia, you’re on a path.

Isabelle Roberge

Absolutely.

Alya Niang

And that’s whether you like it or not. And I think the purpose of the ������ϱ�report is to help people understand that there’s a trajectory, a roadway. And we may not be giving people the support they need to make that journey. And I’d like to know what you had to do for your father.

Isabelle Roberge

I totally agree that the road is not necessarily well explained. When you get the diagnosis, you don’t directly understand that it unfolds over the course of years. But at the same time, Alya, for us, we’re outside the city. I live in Montréal, but my mom and dad live in the Eastern Townships. And in our corner of Quebec, we’ve had a lot of help for this journey. The help has come from several places. It’s come via the doctors, so via the medical network, the public network.

We got this news, my dad’s diagnosis, 9 years ago from the doctors who had tested him to determine his cognitive level. My mom gave us the news because she was the one who’d been with the doctor. And as I was saying, it comes as a shock, but at the same time, at that point it seems so far away. You know there’s going to be a decline but you hope it’s going to be slow. So my sister and I weren't alarmed. We definitely wanted to support my mom and dad in all of this, but at the time, there was some help; among other things, my mom had help from the Alzheimer Society, which really is a great organization. You can go as a caregiver or as a participant.

So, my dad went as a participant for several years. He went to Cowansville. They're from Lac-Brome, but he went to Cowansville. And this gave my mom 1 day of respite a week. So, every Monday, he was at the centre and my mom got some respite time. So I'd say that was one of the first steps. And with the Society, they helped us learn how to navigate through all of this so that we didn't lose ourselves as caregivers.

Alya Niang

Your load as a caregiver for your father... What did you have to do for him?

Isabelle Roberge

My dad was at home for 8 years with the diagnosis. So, as I mentioned, we had the respite day at the Alzheimer Society. On top of that, my mom had help that we paid for privately, so she could go out and have some time for herself. Then of course, you know, my parents had been married for 60 years. So, my dad definitely relied a lot on my mom. Even though there was someone at the house to help him, he wasn't that interested in the help. He was only interested in my mom…to know where she was and everything.

It's really burdensome for the caregivers, in spite of having help. It's a concept called ‘shadowing.’ They ‘shadow’ their person, their primary person. My dad's primary person was my mom... 60 years of marriage. They lived together for 8 years with the diagnosis. She had a lot on her shoulders. That said, it's important to mention that during all this time, since he was diagnosed, my dad accepted it. Lots of people don't accept the disease. And by not accepting the disease, it makes it difficult for everyone, for the caregiver and for the children, and so on. We were lucky enough to have a dad who would often say, “You know, my memory’s not what it used to be.” He accepted his condition. I'd say we had 8 good years with him at home.

It got heavier and heavier, that’s for sure, because physically, it was getting harder. At a certain point, there are problems getting to the bathroom. He was having problems just getting around the house, despite it being on 1 floor. And carpets, etc., he was tripping on things. At a certain point, it becomes too much.

My sister and I live in Montréal. My sister and I were there on weekends to visit our parents and help them out. But during the week, the whole load was on my mom. This is a reality for many people. You could say that my parents were lucky in that we were there every weekend. Because that’s not everyone’s reality. Quebec is big. And sometimes people can’t be there with their families to help them.

Alya Niang

That’s right. And I imagine the fact that your father accepted his disease made things somewhat easier. And I can also imagine that he relied more on your mom, he trusted her more, as you said earlier, given that they’d been married for 60 years. So, I imagine you saw a certain, I wouldn’t say a burden, but nonetheless a heavy task for your mother. And also, not that you were losing her, but that you felt that she had this heavy load on her shoulders. And you felt the duty to be there for her, to support her through your father’s illness.

Isabelle Roberge

Absolutely. And then this summer, we realized that what was coming was that we were going to lose my mom. If we weren’t going to lose my dad, she was going to go first. And we know it happens. She had become more fragile after breaking her leg 2 years before. Of course, at that age—she’s now 82—well, you diminish a bit, don’t you? So, this summer, my mom, my sister, and I, together, arrived at the decision that my mom could no longer keep my dad at home. That it was physically and mentally far too heavy a load.

Alya Niang

How much time did you spend looking after your father, if you had to put a number of hours to it, say, per week?

Isabelle Roberge

It’s hard to quantify because my sister and I split the work between us. You know the phrase “divide and conquer.” I think when it comes to conquering the disease and helping each other out, you’ve got to split it. So my sister did a few hours, I did a few hours, and my mom did the majority of the work. It was a few hours a weekend, but the distance did it, between Montréal and the Eastern Townships. And the daily phone calls, etc., being there, it’s not only quantifiable in hours. And I don’t think anyone should feel guilty when dealing with this kind of diagnosis. For caregivers, it’s not about the quantity of hours, it’s about the quality. It’s about being there, and being there especially for the caregiver.

Alya Niang

That’s right. And did you receive any help from the government?

Isabelle Roberge

Yes. So, at a certain stage, as the disease progressed, via geriatrics we called on our local CLSC. Our local CLSC responded very well, and they’re well versed in this; I imagine in our area they’re not overrun, so we were able to have a social worker come to the house each month to see my mom and dad, see where things were at, evaluate my dad in terms of how the disease was progressing. They were great, and they included me and my sister in the process, which is important because my mom might have wanted to hide things from us.

Alya Niang

I can imagine.

Isabelle Roberge

So, we had a good rapport, the 3 of us together, for moving forward.

Alya Niang

Yes. And how did the transition go, from home to, shall I say, the public system?

Isabelle Roberge

Yes. So for us, this transition took place in June. It was a difficult one. It’s definitely heartbreaking separating your parents who’ve been married for 60 years. Because my mom, as much as we wanted it, it was a difficult step. But we decided to go private first. We were able to put our name on the waiting list for CHSLDs. But at that point, we weren’t a top priority because CHSLDs are very congested. And it goes by order of case priority. And we weren’t high enough on the priority list yet. So we decided to go a different route. My mom had planned well financially all those years.

So we could afford to go to a private residence. And that’s what we did. But that proved to be another difficult step. Because we’d found a place that we thought was really good. But often in private residences, you don’t get all the information. We weren’t properly informed. We were told that there was, of course, a wing for dementia patients. My dad was going to be in that wing with 15 other residents. But we weren’t told directly enough that if there were behavioural issues or if there were physical problems, such as incontinence, then he wouldn’t be able to stay. So, it was a bit of a shock because his stint at the private residence, his move, lasted 1 week. He only stayed for 1 week.

Alya Niang

OK.

Isabelle Roberge

After a week, they kicked him out. They deemed that his behaviour was too aggressive.

Alya Niang

OK.

Isabelle Roberge

So, from one day to the next, he had to leave. And that was a big, big, big shock.

Alya Niang

I can imagine.

Isabelle Roberge

A big shock for us, a big shock for my mom. What happened was that 1 evening there was some inappropriate behaviour.

Alya Niang

Yes.

Isabelle Roberge

And they called my mom that very evening to let her know. And they said, come and see us tomorrow. They called the social worker so that she’d be at the meeting too. And at this meeting, they told my mom that he had to leave. So, my mom said, well, when? They said, well, today. She said, where? They said, well, you have 2 options. Either he goes back home with you or he goes to the hospital. So, you’re 82 years old, you’re faced with this choice. It’s really not a great choice.

Because these days, people are always afraid of hospitals. We know that people get stuck in the emergency room, in the hallway, and so on. With his advanced condition, this wasn’t ideal. The other option was to send him home. And that’s what she did. He came back home. The social worker was there. She allocated a large number of hours to my mom. Virtually a 24/7 presence.

Alya Niang

So you got a lot of help when he returned home.

Isabelle Roberge

OK. Yes. But then there was another episode because, well, you never know how people are going to react when they’re uprooted like that. My dad had been completely uprooted from his surroundings. As I said, he was very attached to my mom, too attached to my mom.

Alya Niang

Yes.

Isabelle Roberge

And he had a strong reaction to that separation, and his behaviour was a bit inappropriate, a bit aggressive. But this is very common with the disease. It’s very common. For people who haven’t been aggressive in the past.

Alya Niang

And how long did he stay at home?

Isabelle Roberge

1 more week at home, until there was an incident. The woman who’d been hired by the CLSC phoned me and my sister to tell us that there had been some inappropriate behaviour. And that’s when my sister and I understood. My mom wasn’t there at the time.

Alya Niang

Yes.

Isabelle Roberge

At that point my sister and I got it, about how the system worked. That to get into the CHSLD system, into the public system, on a priority basis, it had be done through the hospital.

Alya Niang

OK.

Isabelle Roberge

So, we called the ambulance, the police, who came for my dad to take him to the hospital. He spent 3 weeks in the hospital, waiting for a spot to open up in a CHSLD near our home, in the area.

Alya Niang

Isabelle, during the years of his illness, apart from the period you just explained when he had to be hospitalized for 3 weeks, did he ever have to stay in the hospital during those years?

Isabelle Roberge

No, he hadn’t been hospitalized before. After those 3 weeks, a spot became available in Cowansville, in a CHSLD, and he was moved there. And that was a big transition, that’s for sure. But we went there a lot. My mom went there every day. It was about a 20-minute drive for her to get there, then 20 minutes back. My mom went every day. That’s how it was. But then later on, again he had to... Again, they decided to transfer him to another CHSLD that they said was more appropriate for him, for his case. So, a month ago he was moved to Granby. It’s a 40-minute drive for my mom to get there, 40 minutes back. And she feels the need to go there very frequently. From what we know, expert opinions are divided on how good it is to go frequently, or not. I’ve found that in this regard, there isn’t much guidance on what the best approach is. I would have liked being told what the best approach is, because we’re having a bit of trouble convincing our mother to not go too often, and to not wear herself out. She said it feels good to go. But at the same time, we know that she’s getting very tired because she’s elderly and it’s a lot of driving.

Alya Niang

That’s for sure.

Isabelle Roberge

And this winter, with the snow, we don’t know what we’re going to do.

Alya Niang

Right. And Isabelle, one of the things in the ������ϱ�report was the percentage of caregivers experiencing distress living with someone with dementia. And this percentage is very high.

Isabelle Roberge

Yes.

Alya Niang

It’s 46%, or almost half. That strikes me as a lot. So I’d like to ask you, what change needs to happen? And if you could fix the systems for families that are following after you with a dementia diagnosis, what would you do?

Isabelle Roberge

I’m not surprised, even by your figure from the report, of 46%, I’d say it’s even more than that, in actual fact.

Alya Niang

That’s possible.

Isabelle Roberge

We see it with our mom, there are good days and not-so-good days. And she really feels my dad’s ups and downs. If my dad has a bad day, she has a bad day too. So there are days when I’d say she’s depressed. And it’s not easy to go through. How to improve this? I don’t have the solution. No one seems to have the answer at the moment, because there’s still a shortage of resources. It’s all a matter of resources and communication. I think the CHSLDs are really doing their best.

We’ve had some very good experiences with the people who work there. But for sure, at times we’ve also felt alone. As I was saying, I would have liked someone to guide us on the best approaches, on how often to go, and to have someone really help reinforce this with my mom. For instance, if they were to say only go see your husband every 3 days, and for no longer than 1 hour a day, for example, I’d have liked it if someone followed up on this, and that she listened so that she wouldn’t become distressed. This doesn’t happen. We’re lucky, we get help privately.

My mother sees a psychologist and pays for it herself, in order to get this help. But the person, the psychologist, isn’t specialized in this disease or in bereavement. And as you know, psychologists are another resource that are hard to come by. Even when we pay them. So obviously when we don’t pay them, if it’s through the public system, the visits are going to be very infrequent, and not provide much help either. But really, it takes a village, you really have to be well surrounded.

Alya Niang

Definitely.

Isabelle Roberge

I think about people who don’t have children. My parents have me and my sister, we’re very present. We each go twice a week, so technically that’s 4 days. That leaves 3 days for my mom to go, if she wants there to be a daily presence. So, we’re still looking at maybe getting some help that we would pay for, to provide some company for my dad at the CHSLD.

Alya Niang

OK, I understand.

Isabelle Roberge

There’s maybe a bit of guilt involved, of course there’s a bit of that, but to know that there’s someone who’s there just for him. Because as I say, not to diminish the people who work there who are absolutely wonderful and very giving, they have a lot of patients. There are 2 or 3 of them for about fifteen patients. That’s a lot, because these people are not at all autonomous. Not at all.

Alya Niang

And so, if I understand correctly, as you said earlier, you’re quite lucky compared to other people who haven’t been able to get as much help from the government, and your trajectory hasn’t been as difficult either.

Isabelle Roberge

Absolutely. As I say, he made it easy for us during the first 8 years of his diagnosis by accepting it.

Alya Niang

That’s right.

Isabelle Roberge

So, yes, in spite of everything, we consider ourselves very lucky in all of this. My mother considers herself lucky; she also has 2 very attentive daughters who come every weekend and who each go visit my dad twice. So, yes, we’re among the lucky ones, but we had to get organized. We seek out the resources. We have a budget for these resources, for taking care of my dad. So, yes, we’re among the lucky ones.

Alya Niang

That’s great.

Isabelle Roberge

Absolutely.

Alya Niang

So, thank you very much, Isabelle, for telling us about the trajectory of your father’s Alzheimer’s disease. It’s very much appreciated. Thank you very much.

Isabelle Roberge

Thank you. I’d like to add that if there are people out there listening to us who have recently received this diagnosis, you have to go and ask for help, you have to get organized quickly in terms of finances, budgets, and so on. You’ve got to get organized, and there are ways of getting through it. The Alzheimer Society is an extraordinary resource, and Info-Aidant is also a resource. You have to talk about it. You have to talk to your doctor, then talk to the CLSC to get all the help you can, because the road ahead isn’t going to be easy.

Alya Niang

Great. Thanks again for this additional information. Thank you.

To learn more about this report on dementia, the full document is available on the Canadian Institute for ������ϱ� Information website at cihi.ca. As a caregiver, Isabelle reminds us of the importance of asking for help and of not giving up hope, because there is a way to get through it.

A big thank you for taking time to listen in. Please subscribe to the CHIP wherever you get your podcasts. I’m Alya Niang, talk to you next time.