The Long Goodbye: Dementia After Diagnosis

Avis Favaro

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.

You’ll hear about the problems faced by Katrina Prescott, a 46-year-old Vancouver woman who spent 8 years as caregiver for her mother, Kathryn, who was prone to wandering.

Katrina Prescott

I had an alarm on her door and a camera and all these things. And if she opened her door at 3 a.m., I would fly up the 6 flights of stairs in my pajamas. You know, it was really stressful. I basically just stopped sleeping from 2017 on.

Avis Favaro

The report is called A Step Toward Understanding Health Care Trajectories of People Living With Dementia.

It also found that for 67% of patients, their family doctor had to give them the diagnosis. You’ll hear from David Hood, a retired family physician in Guelph, Ontario, who says patients and family are often very resistant to getting the news and losing, primarily, the ability to drive.

David Hood

You often have to play hardball with them, too, and say, “How would you feel if, because of your delayed reaction or your loss of attention, you hit someone with your car?” And I don’t like to be that harsh, but that’s sometimes what it takes for them to see that’s an issue.

Avis Favaro

Hello and welcome to the Canadian Health Information Podcast. We call it the CHIP for short. I’m Avis Favaro, 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. What works, what doesn’t and how to improve the services for the thousands of Canadians who will need them.

Thank you for joining the podcast, Katrina. Thanks for coming in.

Katrina Prescott

Thanks for having me. Really appreciate it.

Avis Favaro

When did you hear that your mother was developing dementia?

Katrina Prescott

Mom was in her early 60s when we got the diagnosis. I didn’t think any of it was going to be that big of a deal. Like, I just thought we’re going to go to the doctor and she’s going to be fine. And then it — once the ball started rolling or the dominoes started falling, it just didn’t stop. And it was one thing after another. And it wasn’t little. It was intense. Each thing was so intense, and it was non-stop.

Avis Favaro

So I think the purpose of the CIHI report, Katrina, 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. What did you have to do for your mom?

Katrina Prescott

I moved her into my apartment building. Yeah. I just realized she couldn’t be alone, and she didn’t want to be alone.

Avis Favaro

So you moved her closer to you, not in the same apartment?

Katrina Prescott

I moved her upstairs in my building. Yeah.

Avis Favaro

How much of your day did you spend taking care of Kathryn?

Katrina Prescot

I mean, it was 24/7. It was a 24/7 total care. Because what happened was Mom would walk. She would walk normally. And this is before diagnosis. Right? I don’t think that we knew it was dementia. So she would walk. And she would always come home. It was fine. That’s what she did. She liked to walk for years. This is what she did.

One day, she didn’t make it home, which was terrible. She was missing for 27 hours. It was really, really horrible. And she was found very far away. So anyway, police found her. It was on the news, everything. Brought her home. Great. It happened again 2 weeks later. This time, she ended up being found by paramedics after 20-some-odd hours again and taken to the hospital.

What happened then was the health authority wanted to place her into long-term care and take her out of my care, which was not our wish. Mom was 62, maybe, at the time, or 63. And she was full of life. She was very vibrant. She had a lot of things she wanted to do.

And the doctor also said, you know, “If your mom goes into long-term care, she has so much energy that they will give her a lot of drugs and she’ll probably be dead within 6 to 18 months.” So that just didn’t feel like an option to me at all.

So I brought her home, but I was only allowed to bring her home if she never went missing again. And if I did, she would be taken out of my care. It was a very stressful time. I didn’t know that my mom’s health could just be taken over by the government.

So anyway, I brought Mom home. But from that moment, which was probably early 2017, she could not leave my side or somebody’s side. Nobody could leave her alone because if she got lost, that was it for her. And it was brutal. It was a brutal stipulation to put on a person and not give them enough help to support them in that stipulation. So —

Avis Favaro

Yeah.

Katrina Prescott

— when we came home, I think I had 6 hours of help a week from the government.

Avis Favaro

Total, just 6 hours a week?

Katrina Prescott

6 hours a week. Yeah.

Avis Favaro

I have no words. I’m trying to put myself in your place. How did that upend your life?

Katrina Prescott

Yeah. Like I’m crying right now. I haven’t thought about it in so long.

Avis Favaro

What made you cry?

Katrina Prescott

[indiscernible] Yeah. It was horrible. It was the — it was really the worst. So many terrible things happened through the medical system. But that was really one of the worst things that ever happened. It made me a prisoner. It didn’t support us at all. It just felt like my mom didn’t matter. And they just basically gave us an ultimatum. They probably thought, sooner or later, she would get lost and that would be that. But that wasn’t what was going to happen, not on my watch.

Avis Favaro

How did you structure your life to take care of someone with frontotemporal dementia?

Katrina Prescott

It just basically became she was beside me all the time. Right? So — and she was active and young. So she didn’t like going to adult day program with 85-year-olds. Fair. She wanted to go for walks like she used to. You know, we’d walk 8 to 10 hours a day. I would try to do my work calls. I would make meals. I would try to keep up on all the things around home. I basically moved into her apartment.

The nights that I did sleep here, I had an alarm on her door and a camera and all these things. And if she opened her door at 3 a.m., I would fly up the 6 flights of stairs in my pajamas. You know, it was really stressful. I basically just stopped sleeping from 2017 on.

Avis Favaro

One of the things in the CIHI report was percentage of caregivers experiencing distress —

Katrina Prescott

Oh.

Avis Favaro

— of living with someone with dementia. And that was very high, 46%, like approaching half.

Katrina Prescott

It’s probably above half. I feel like that number’s flipped or something.

Avis Favaro

You’re a straight-talking woman. And when we talked about this earlier, you said the process sucks.

Katrina Prescott

Yeah. Well, there is no process. And the process — so that sucks. And then there’s no real actual supports to set anybody up for success.

Avis Favaro

That’s part of your message because, now, you are an advocate.

Katrina Prescott

Yes. Well, the health care system needs to change. It’s a very siloed system that, you know — we’re on the front lines. We know what’s going on. Our voices need to be heard. And so does the person living with dementia, if that’s available. But it’s generally discounted. We were laughed out of doctors’ offices.

I had a doctor put his hand in my face at one point because I was trying to ask him a question and explain things about how would best — how it would be best to move forward with Mom in this situation: “Hey, I’ve been in this situation many times. If we just do this…” “Don’t talk to me; I’m the doctor.” You know? It’s like, okay.

You know, it’s very challenging to navigate the system. Doctors are also maxed out. We don’t have enough doctors. They’re stressed to capacity. This isn’t what they signed up for, probably. They signed up to help people. They’re overwrought. The hospitals are overrun.

That’s one side of it. And then the home health supports, you know, 6 hours a week, how do you do it?

Avis Favaro

Is that the most you ever got? Or did you get more as you went on?

Katrina Prescott

I ended up getting more after several years of social workers and hospitals and other places advocating for me and myself advocating for me. I ended up getting 37 hours a week, which is still not a work week. Right? Plus, you know, who’s doing the taxes? Who’s doing all the things that need to get done?

So 37 was way better but, you know, that was kind of 4 hours a day. I think I bunched it into 4 or 5 hours a day during the week, so I could have solid work hours and then toggle it on the rest. And then on the weekend, you know, you’re on your own.

It was a lot. And I was very worried about my own health. I didn’t sleep. I finally have been able to go to the dentist since Mom has died, and I have to get major dental work. Because you’re not sleeping, you don’t think to brush your teeth. You don’t even think about yourself.

Avis Favaro

How much did you sacrifice for your mom?

Katrina Prescott

I don’t really look at it like that. You know, my mom would have done the same for me. The way that I look at it is because the system wasn’t there for me, I didn’t have a choice.

The choices were, your mom goes into long-term care in her early 60s and maybe lives 18 months. Or she can stay at home with you and probably live 7 years. To me, that’s not a choice. It wasn’t even a sacrifice, which I wish it was a sacrifice. But I don’t even feel like I was given a choice to make a sacrifice.

Avis Favaro

Your mom, how many times did she end up in hospital in those years?

Katrina Prescott

Oh, a lot. Yeah. And some of those were long stays. I think one stay was a month or two. They couldn’t figure it out, and I didn’t know anything. It was just constipation.

I think, actually, that stay turned into about 3 months. But if we had just had some aloe vera juice and some prunes, that wouldn’t have happened. But I didn’t know anything about constipation. How would I know?

Avis Favaro

So if they had given you more home care, how many hospital visits would you have avoided?

Katrina Prescott

Once we were on the program, where we had nurse practitioners and doctors available to us 24/7, we didn’t have to use the hospital as often. And when we did use the hospital, it was because we had to.

And people living with dementia do not do well in the hospital. Why are we torturing them? Why are we doing this to them? And what impact does it have on the caregiver? I have to go to the hospital every day. I have to advocate for my mom. “No, please don’t give her all those. No, please don’t. She doesn’t like this.” You know, “don’t strap her down. She’s living with dementia.” Because, you know, if someone acts out, they want to strap you to the bed. Please don’t do that. You know? So you have to be there with the person all the time.

And for people who have lived through — who are living with PTSD at the hands of the system, you really need help after and during. It’s really hard to speak up.

Avis Favaro

Is that what you feel you suffered because of the way —

Katrina Prescott

Oh.

Avis Favaro

— it left you? Yes?

Katrina Prescott

My counsellor said I was suffering from system PTSD. Yeah. It was brutal. You know, as a producer, I can handle a lot of stress. Nothing could prepare me for that level of stress.

Avis Favaro

What’s the overhaul required? Tell me, if you were able to fix the systems for the families that follow you with dementia diagnosis, what would you do?

Katrina Prescott

I always say this: Respite is the number 1 thing we need, adequate and effective respite. People need to be able to work. We need to not make caregivers sick when they’re not, because that’s also taxing on the system. We need to set people up for success, and respite is the first step in that.

Avis Favaro

Then that ties into more home care. You could have used more home care at the beginning.

Katrina Prescott

A hundred percent.

Avis Favaro

This is so important to you that you are an advocate and a coach.

Katrina Prescott

Yes.

Avis Favaro

So why are you a coach? And what is it that you’re trying to tell people to help them navigate this? You use a phrase — it’s cute — not a fairy godmother, but a godmother for caregivers.

Katrina Prescott

You know, I always wished I had a care-y godmother, okay, that could help me figure this whole thing out. Or that just had lived through it and could advise me, oh, if someone does this, you do that; when they say this, you can say that.
So now, I work with other people in their journeys, one on one, and I do groups as well, to kind of give them that insider info that they never had. I mean, sometimes, it’s these little tweaks with conscious communication that make all the difference.

Avis Favaro

Katrina, thank you so much for sharing what you did for your mom. Your mom, I have to say, is a very lucky mother to have a daughter like you doing that for her.

Katrina Prescott

Well, thank you very much. I mean, I feel very lucky to have a mother like her, and I’m grateful that she let me be her caregiver.

Avis Favaro

I totally get that. Thank you again.

The CIHI report shows that two-thirds of Canadians with dementia are given that diagnosis by a family doctor, like our next guest, David Hood, a front-line physician, and was also a caregiver to his parents and in-laws who had dementia.

Welcome, Dr. Hood, to the podcast. Thanks for coming.

David Hood

Thank you, Avis. Thanks for inviting me.

Avis Favaro

So you read the report about the trajectory of people living with dementia. Why is this important? And what’s the key message for you from this report?

David Hood

I think that the big thing is we’re doing a reasonable job, but we could do a much better job if we had more personnel and more facilities and financial capabilities to provide more care.

Avis Favaro

It surprises me you said a reasonable job because the first guest in the podcast —

David Hood

Mm-hmm.

Avis Favaro

— was a young woman who took care of her mother with frontotemporal dementia for —

David Hood

Right.

Avis Favaro

— 7 or 8 years. And —

David Hood

Mm-hmm. Yeah.

Avis Favaro

— she didn’t really get help until the end. And it was quite a horror story. And I know many other people going through this are having a big struggle. You know, why do you say reasonably good?

David Hood

I think that the people that are engaged in the system are being looked after reasonably well. But I guess, if you look at the overall of how many people should be or could be receiving services, yes, we’re not doing as good a job as we should be. Mm-hmm.

Avis Favaro

I bet you’ve seen your fair share of people coming in and getting a diagnosis of dementia.

David Hood

Yes.

Avis Favaro

Yeah. So that’s one of the things the report talks about.

David Hood

Mm-hmm.

Avis Favaro

What was your experience? And did you see more people getting this diagnosis, and you had to give the families the word?

David Hood

Yes. Definitely, we were starting to see more people getting the diagnosis. And the difficulty is getting acceptance on all parts.

Avis Favaro

What does that mean?

David Hood

The patient usually is not keen on being diagnosed as having dementia. The family often doesn’t want to admit it, or they try to cover for them and compensate for them, so that they could be — some of them could be quite advanced before you really see what’s going on. Because if you’re only seeing them in the office, they can look pretty good for a 15-, 30-minute appointment. And you don’t really see how they’re functioning in their day-to-day lives.

The biggest thing is driving and living in your own home. Those are the real obstacles to people acknowledging that they have issues with dementia.

Avis Favaro

This is exactly the trajectory of my father. The minute —

David Hood

Mm-hmm.

Avis Favaro

— he lost his driver’s licence, the bottom —

David Hood

Right.

Avis Favaro

— fell out. How does that affect you?

David Hood

It’s not easy. The key factor in both the driving and the home is the independence and the idea that they’d need to get someone to drive them everywhere.

Avis Favaro

Oh, I know. That’s hard to accept. I know that you also were a caregiver. So you feel this not just as a physician —

David Hood

Correct.

Avis Favaro

— but you’ve seen it on the front line.

David Hood

Yes. And then —

Avis Favaro

You know what people are going through.

David Hood

I went through the same thing, where my dad was covering up for my mom. And so I know how easy it is for it to be done. So even when you’re seeing them frequently, you don’t always pick it up. So I think the big thing is to have an awareness and have — you know, to see things and don’t just say, “Oh, they’re just getting forgetful.”

Avis Favaro

Now in the report, it talked about the stress of all of this to the caregivers. What about the stress —

David Hood

Mm-hmm.

Avis Favaro

— to the family doctors?

David Hood

You’re used to thinking of yourself as being the patient’s advocate and, to a very large extent, their friend. You become like family with them, and they see you as a friend. So they’re begging you not to report them for driving.

Avis Favaro

That’s a hard reality. It —

David Hood

And when it’s the family that’s the problem, I look them right in the eye and say, “Would you let your dad drive your kids somewhere?” You often have to play hardball with them too, and say, like, “How would you feel if because of your delayed reaction or your loss of attention, you hit someone with your car?” And, you know, I don’t like to be that harsh, but that’s sometimes what it takes for them to see that that’s an issue.

Avis Favaro

So are family doctors the front line on this diagnosis of this wave of dementia?

David Hood

I would say yes. That, I would say well over half the people are diagnosed by family doctors or at least strongly suspected. By the time you’re going to refer them to have an assessment with the geriatrician, you know, you’re pretty sure that it is. Sometimes, that’s what it takes to get the patient and the family to accept it, when someone that’s seen as a specialist is saying, yes, that they have dementia and they shouldn’t drive.

Avis Favaro

Step 1. So the trajectory, as is detailed in the CIHI report, also shows that a third of them, their first presentation is by ending up in hospital after a fall or something.

David Hood

Correct.

Avis Favaro

And that also is another doorway to getting a diagnosis. Did you see that?

David Hood

Yes. In Guelph, we have a very good geriatric service. And if someone is in hospital, then they at least get seen by the nurse practitioner but, most of the time, by the geriatrician herself.

And when someone is in the hospital, it’s also easier to mobilize resources, such as the home care support, getting into the Alzheimer’s day program, that type of thing. Because, you know, the hospital’s the most expensive part of health care, and they do prioritize resources that enable someone to get back into the community or into a more appropriate place than being in hospital.

Avis Favaro

So then we’ll go along the trajectory —

David Hood

Mm-hmm.

Avis Favaro

— or the roadway. The next one is home care for most of them.

David Hood

Right.

Avis Favaro

Do most of the families say they want this care to be delivered at home?

David Hood

It’s probably about 50/50, would be my guess. The issue often is the older generation. So the person with Alzheimer’s and the spouse don’t want someone else coming into their home.

The families are usually okay, especially if the parent needs help with bathing. There’s a lot of children who, they’re not comfortable with seeing their parent naked, or the parent’s not comfortable with them seeing them that way.

And so that’s often one of the first things that you get in is for a PSW to come in to help them to get a shower or a bath. It’s one of the first things that they’ll accept.

Avis Favaro

I’ve heard of caregivers developing PTSD —

David Hood

Absolutely.

Avis Favaro

— or becoming ill themselves.

David Hood

Mm-hmm.

Avis Favaro

You’ve seen that?

David Hood

Yes. I can give you an example where the wife had significant dementia, but the husband covered it up and did everything for her. And so we had no idea of how bad she was getting until he got sick.

He got sick. He wouldn’t leave her at home to go see the doctor and ended up very sick and hospitalized. And that was when we found out that his wife could not do anything herself, couldn’t be left alone at night, couldn’t prepare a basic meal for herself, was totally dependent on other people helping her.

Avis Favaro

That’s a good segue to the next part of the road —

David Hood

Mm-hmm.

Avis Favaro

— which is long-term care. Do you have problems getting these patients into long-term care?

David Hood

Yes.

Avis Favaro

How hard is it?

David Hood

If they’re not in a crisis, it can be a 2- to 3-year wait. And so when you’ve already had the family ignoring or denying the diagnosis, right, with the covering up, et cetera, and then by the time that you come to the realization that dementia’s an issue and the significance of it, they’re usually fairly advanced. And it becomes difficult to keep that person safe until they can get in somewhere.

Avis Favaro

Is the wait contributing to bad outcomes?

David Hood

Oh, that’s a good question. I would say that there could be a better outcome if there was more long-term care available. I don’t think that people are necessarily dying because of it, but they certainly are having a poorer quality of life, and there’s more stress on the family.

Avis Favaro

The woman that we interviewed, Katrina —

David Hood

Mm-hmm.

Avis Favaro

— Prescott, talked about how, in her area in B.C., they have this special program where the medical teams and nurse practitioners go into the home —

David Hood

Mm-hmm.

Avis Favaro

— and tag it up with home care. And that —

David Hood

Right.

Avis Favaro

— made things so much easier the last year or two.

David Hood

Mm-hmm.

Avis Favaro

But not all communities have that. So there’s some kind of hidden crisis perhaps happening that we don’t see.

David Hood

Right. We do have a program in Ontario, at least in Guelph, and I believe it’s province-wide, where it’s — where you’re in the hospital, you need to go to long-term care but there’s no bed, and they will put extra services in while that person goes to the top of the wait-list to get into long-term care. So they intensify the support for someone who, ideally, would be in long-term care already but there’s no bed available.

Avis Favaro

Okay. So the last stage is, for those — there are some that stay home right to the conclusion. The other ones go to long-term care.

David Hood

Mm-hmm.

Avis Favaro

What did you see in terms of your patients who went to long-term care?

David Hood

I think, generally, they’re safer just because there’s always someone there. I mean, obviously, they’re not 24/7 in their room, but if they run into a problem — because that’s one of the big concerns with families. You know, is mom going to end up on the floor, and I’m not going to know for 2 days? Well, that’s not going to happen in the long-term care because they’re checking them frequently.

I think it reduces the stress level significantly on the caregivers and on the rest of the family. So there’s that benefit. You know, it’s like anything. There’s going to be — some care facilities are going to be better than others. They all struggle with staffing and having enough people.

I mean, there’s nothing that’s stopping the family from going in and augmenting that if there’s an issue and going in. Because I think it’s still — I think we need to look at it that when they go into long-term care, it’s not a complete abdication of responsibility for providing care for the family. It should be a collaborative effort.

Avis Favaro

So when you look at the whole roadway, from your perspective, where are the spots where individuals can make a difference, and governments have to step in?

David Hood

Well, I think, you know, if you look at long-term care in the rural communities, there’s a lot more community engagement. There’s more volunteers, I think. So that allows the paid staff to be able to do other things. So that could improve the care that they’re providing.

I think the big thing with the government is the financing. And the difficulty is, a lot of the buildings are getting older. When you’ve still got some mix of ones that are more, almost private, for want of a better word, and completely government-funded, that it’s difficult for people that look at it from a business perspective to want to open up more homes. When they’ve got a lot of regulation on the staffing, they must provide the services they must provide.

Avis Favaro

They’re closing some of them.

David Hood

Yes. LaPointe Fisher in Guelph is closing or is about to close or may have already closed.

Avis Favaro

Does that worry you?

David Hood

Yes. Well —

Avis Favaro

It’s not —

David Hood

— because I might be there, you know, in a few years. So I think that’s the — that would be the selfish perspective is making sure that the resources are going to be there in case that we’re going to need them in our generation.
And I think we need to come up with more because, pretty soon, the baby boomers are going to be 80. And the baby boomers are going to have the chronic illnesses that make them unsafe to be at home. And that’s a whole lot more people than what we’re dealing with now.

Avis Favaro

So if you had a message, a take-home message from all of this about the trajectory in this report —

David Hood

Mm-hmm.

Avis Favaro

— what would that be?

David Hood

I think we can’t ignore it. We have to prepare for it, just because of the number of people that we’re going to see facing these issues. And we need to start now. We need more health care personnel. We need more facilities that are available. And definitely, we’re going to continue to need more financial resources to support it.

Avis Favaro

All right. Well, I think I’ll wrap it up here then. Dr. Hood, thank you so much for your time. Appreciate it.

David Hood

Okay. You’re welcome.

Avis Favaro

There is much more on this report on dementia, with the full document on the Canadian Institute for Health Information website at cihi.ca.

And a note, Katrina Prescott was given a national Caregiving Advocacy Award for her work in helping families deal with Alzheimer’s and dementia. And one of the best tips she gave me was the need for caregivers to breathe because it’s a moment to reset when in a difficult situation.

A big thank you for taking time to listen in, and please subscribe to the CHIP wherever you get your podcasts. I’m Avis Favaro. Talk to you next time.
 

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