From an Early-Onset Alzheimer’s Diagnosis to Speaking at the UN

This article is part of the Journey to Diagnosis series, produced by Being Patient with support provided by Eli Lilly.

A former ICU nurse based in Canada, Alzheimer’s Advocate Phyllis Fehr, was diagnosed with early-onset Alzheimer’s at 53 years old. However, despite working in healthcare, it took her four years to get a diagnosis. It wasn’t until she told her primary care doctor that she was suffering from migraines that she was able to get a cognitive assessment that set her on the path to getting a diagnosis. 

Four years later, when she got her cognitive testing results, the geriatrician she had been referred to wouldn’t even look at her. 

“She only spoke to my husband and said, “Your wife has young-onset Alzheimer’s, and she’s still doing fairly well. So, bring her back when she can’t dress herself.”’ Fehr recalled. “That was it. [She] didn’t offer meds [or] anything else.”

Spurred by that negative experience with diagnosis, Fehr has been involved in anti-stigma work related to dementia and promoting the rights and abilities of people living with dementia, both in Canada and internationally. She’s a past member of the Ontario Dementia Advisory Board and the Advisory Group for the Ontario Dementia strategy. She’s served on the boards of several dementia advocacy organizations and is a current board member of Reimagining Dementia: A Creative Coalition for Justice. Fehr previously served as the patient advisor for the Alzheimer’s Board for Canada and on the board for Dementia Action Alliance International. 

She’s also co-authored several research articles and the book How to Live Well with Dementia: Expert Help for People Living with Dementia and their Family, Friends, and Care Partners. Fehr has also spoken at the United Nations, the Senate of Canada, and the World Health Organization on the human rights of people living with dementia.

Fehr joined Being Patient founder Deborah Kan to discuss her experience with diagnosis, advocacy, and living well with dementia. Read or watch the full conversation below.

Being Patient: How many years have you been living with dementia?

Phyllis Fehr: Well, it depends on if you go with 53 when I was diagnosed or when I first started seeing symptoms. I started seeing symptoms when I was 48. I was having a few difficulties, and it was mostly with my executive functioning, so multitasking, reading, and writing things on paper. I started to see some difficulties when I was trying to do my charting and that type of thing. 

If you need to know the whole story, my dementia journey started when I was 13 because I had a grandmother with dementia that I helped care for, and then my mother. When I talk about my dementia journey, it’s been a long one.

Being Patient: When you say you started having symptoms at 48, what specifically did you notice that was out of the ordinary?

Fehr: I can’t say exactly what was happening. I was the type of person [where] I never wrote anything down, and now I was having to make myself notes. I never used a calendar, and I started to have to use a calendar. 

At work, you do your patient assessment, you go out, and you chart it. Well, it was starting to take me longer and longer to chart and that type of thing. I thought, “Something’s just not right.” I don’t like what’s happening. I don’t like what I’m feeling, and that’s what took me originally to the doctor to say something’s going on. 

The other thing was I had a medical emergency around the same time, and I used to say it’s almost like my brain is stunned. That’s what I felt like, like my brain was stunned. It’s not working right. Something’s not right here. 

You know when you’re talking, and you’re thinking, and things just naturally flow? Well, it wasn’t flowing anymore. It was like I had to search for what I needed. I had to really make that brain work. Like it wasn’t working— it was stunned.

“I had to really make that brain work.
Like it wasn’t working — it was stunned.” 

Being Patient: It sounds like the first early signs manifested when you were at work. What did that look like exactly at work?

Fehr: So, when you go in, and you first see your patient, you do a head-to-toe assessment, and there’s a certain way to chart it, right? When I [would] go out and I’d start to chart, it was like not there. I knew what I had done. I knew what the answers were, but I was having trouble getting it from what was in my brain onto that piece of paper. 

I was one of the senior nurses, so everybody always came to me with questions and looking for answers, and I was finding it harder and harder to answer the questions for them. So, I really quickly took a leave of absence because I didn’t want to make any mistakes.

Being Patient: What was going through your mind taking that leave of absence? Was Alzheimer’s on your mind because of your family history?

Fehr: That was front and center in my mind and something I was very concerned about. When I went to the doctor, they just kind of looked at me and chuckled and went, “No, but it might be menopause, it might be depression, it might be stress, you [are in a] high-stress area,” all those things. 

That was part of the ruling out process. We had to check for all of those things to rule them all out. I will tell you, even after they ruled everything out, he did not send me on to be checked for Alzheimer’s. “It was okay. It’s none of this. So, let’s just carry on and see what happens.” 

I’m not that type of person. I want to know. I let it go for a couple of months, and then I went back to the family doctor. [I] told a white lie and told him my migraines were back because then I knew he’d send me to the neurologist.

“I went back to the family doctor.
[I] told a white lie and told him my migraines
were back because then I knew
he’d send me to the neurologist.” 

Being Patient: Did you have a history of migraines?

Fehr: Yeah, I did. I do have a neurologist who has followed me for years, but I had gone through menopause very early in life, so my migraines stopped after menopause. The other saving grace was I used to work with her. 

When I went into her office, it was the funniest thing. She looks at me [and] goes, “Your migraines are back?”  I went, “No, I lied.” She goes, “What? What’s going on? Tell me.” Then, she took me very [seriously.]. [She said,] “We have to get to the bottom of this because this is so not you.” 

Being Patient: You had not had a cognitive assessment at this point. When you asked her for an evaluation, did you tell her about your family history of Alzheimer’s?

Fehr: That was brought up. I hate to say this, but I think they don’t know what they don’t know. I believe [doctors] have certain diseases that they don’t want to talk about or even consider because they’re not comfortable with it. 

I can remember being ill and having to go to a clinic on the weekend that’s not my normal family doctor. He goes, “What is your medical history?” As soon as I said I had Alzheimer’s, I’ll never forget it. He was like, “I don’t want to hear that.” I was like, whatever, just because you’re not comfortable with it.

“I believe [doctors] have certain diseases
that they don’t want to talk about or
even consider because they’re
not comfortable with it.”

Being Patient: How long were you trying to seek a diagnosis and get that cognitive assessment?

Fehr: This is year three that I finally get to the neurologist. Right away, she sent me off to see a geriatrician. The other thing that I found interesting was that you went off to see the geriatrician and you had to bring a family member. 

I still didn’t feel like I needed anybody with me, but I took my husband; at the time, he couldn’t see a problem with me. Yet some of my friends and kids could, but he didn’t see anything. She did a quick assessment. She goes, “You’re doing fine. Come back in a year.” 

There I sat for another year, and then we were four years. Then she sent me for cognitive testing, and then I went back and saw her, and it was so funny because she and I carried on a conversation like you and I are, and the day I walked in to get the results, she did not look at me. She did not speak to me. 

She only spoke to my husband and said, “Your wife has young-onset Alzheimer’s, and she’s still doing fairly well. So, bring her back when she can’t dress herself.” That was it. [She] didn’t offer meds [or] anything else. I’m just biting my tongue because I knew if I opened my mouth what was going to come out wasn’t going to be nice.

“I’m just biting my tongue because
I knew if I opened my mouth what
was going to come out
wasn’t going to be nice.”

Being Patient: What did you do next after getting that diagnosis and not getting any guidance?

Fehr: Then I walked out of her office. As soon as I got out of the building, I called my neurologist’s office and said, I need to see Dina, and I need to see her now. They said, come right up. I went back up to the neurologist, and I said, “She didn’t put me on meds. She didn’t do this, she didn’t do that,” so she was very good, and she put me on the meds immediately. 

I said, “I’ll never see her again. Find me somebody else.” It took a while to get into the other person. She’s one of the top people in Canada, but I reacted poorly to the meds. They put me on Aricept. I had so many GI symptoms I couldn’t leave the house. 

My appointment was coming up, and I wanted to go on vacation, but I couldn’t leave the house. So, I thought, in ICU, we do a med vacation every now and again— take everybody off the meds. I’m just going to quit my meds, and then I’ll go on vacation because I’m seeing this new specialist.

When I went and saw her, she was amazing. She redid all the testing. I said I couldn’t take the meds I had. I was down to, like, 94 pounds. “Oh, I couldn’t leave the house,” I said, “So, I quit them because I wanted to go away.” She said, “No, that’s fine. Nobody’s given you the patch?” I went, “There’s a patch?” 

I switched to a patch form and medication, which worked great for years, and then my liver enzymes started to go out of whack. I thought, “Okay, I’m going to take another vacation; let my liver recuperate,” I noticed I was not slipping anymore. I’m kind of holding my own, so I don’t want to go back on meds until I start to decline again. 

I also wonder because I’m so involved and because I’m using different parts of my brain all the time, and different aspects of research I’m working on— writing books, and advocacy work, and all the stuff I do — because it’s activating so many areas of my brain, [if] I am developing new neural pathways that are kind of holding me at a level where I’m not slipping.

Being Patient: How many years has it been since diagnosis and how do you feel you are doing now?

Fehr: I was 53, so 12 years [with a] firm diagnosis, and five years before that with symptoms. I’d like to say I’m holding steady at this point in time, but I say I’m on a roller coaster with dementia because I have good days, I have bad days, I have ups, I have downs, [and] I have twists and turns. Some days, I’m right off the rails, right? 

I think it depends on how I’m feeling that day. Did I get enough sleep last night? Because I don’t sleep well, so that’ll affect me. For myself, what I do a lot of the time is I will say I’m doing this, so I don’t plan anything this morning before I do this so I can rest. I can be fresh when I come on to this. 

I start to run into difficulty if I have two or three or four meetings a day and I don’t have a break in between, you’ll notice. You’ll also notice that as the day wears on, I start to get tired. This one side of my face starts to droop, and my smile is off, and those types of things. 

Being self-aware, I can tell this is happening. This is what I need to do. I’m still driving. [I’ll say,]“I’m having a bad day today. I shouldn’t drive,” you tell yourself that. You’re not with it enough. So, get my husband’s driver or call one of the kids to come and get me.

“I say I’m on a roller coaster with
dementia because I have good days,
I have bad days, I have ups,
I have downs, [and] I have
twists and turns. Some days,
I’m right off the rails, right?”

Being Patient: Have you ever been diagnosed with any comorbidities like diabetes?

Fehr: No, I don’t have diabetes. I don’t have high blood pressure. I’ve always said this: other than Alzheimer’s, I am healthy as a horse. 

I will tell you I got [COVID-19] a year ago, and I had Long COVID, and now I have lung issues due to it. If my lungs are acting up, I don’t think I’m oxygenating quite as well, and that’s when I’ll also see a decline. The other thing is, if I get a bladder infection, I’m done.

I have gone into a delirium with a bladder infection, and I knew I was getting it. I went to the doctor on a Friday morning and said, “Something’s just not right.” He didn’t think I had enough to say, let’s check your urine. 

By four o’clock that afternoon, I had full-blown symptoms. I went back to the walk-in clinic, got antibiotics right away, but I still ended up with a full-blown delirium. You think, “Oh, you’re on antibiotics. It’s going to clear up.” It doesn’t clear up that quickly. 

Even after the antibiotics were done, I was worried. I thought, “Oh, my goodness, is this going to be my new norm? I can’t live like this if it’s my new norm.” It was really interesting. It took a good month for me to come back to a level where, “Oh, I can function.”

Being Patient: What advice do you have for a new diagnosis and navigating the healthcare system?

Fehr: My advice to somebody who’s newly diagnosed is to stay engaged, stay social, [and] stay active. If you’re not one for exercising, start exercising. Watch your diet, start eating properly, and that’ll help you and yourself. 

Then, [this] what you need to do is for the healthcare system. I don’t care whether you’re in the US, Europe, or wherever— be conscious of yourself and what your wants and needs are. Write it out and take your list with you. I will not give up until I get my answer. Push for an answer. Don’t let them [have] time to push you out the door.

“My advice to somebody who’s
newly diagnosed is to stay
engaged, stay social,
[and] stay active.”

Being Patient: Tell us about how you started doing advocacy work in the dementia and disability space.

Fehr: Right after I got my diagnosis, and I was being treated so poorly, I thought back to my mother and my grandmother. They were both hidden away because that was the ’90s and ’60s when they were diagnosed. People with Alzheimer’s were hidden away [then]. 

I thought, “I’m not hiding from anybody.” Then I also thought [that] things need to change, so I’m going to be the person who helps to change things in the world for others living with dementia because I don’t want them to go through what I went through. I want it to be easier. 

I got involved with the Alzheimer’s Society, just the local one in my area, to help there and start to make change. Slowly, I got more and more active and started to talk to the governments and stuff like that. I was with a group of friends who do disability work, and they were getting ready to go to talk at the United Nations on the Charter of Rights of People with Disabilities because Canada was reporting on it.

I went. I need to be there because dementia is not included, and it needs to be. They invited me along and helped me put the stuff I wanted in that charter in there. That really did make a difference here in Canada. That was the start of the change because when the United Nations and the World Health [Organization] wrote their letter back to Canada, they were given a mandate, and in the mandate, they had to change. 

They sent it to the Senate of Canada, who held hearings and were sitting back, and we’re watching them talk to researchers, all the specialists, but they weren’t talking to people living with dementia. So, a group of us got together, wrote them a letter, and showed them the error of their ways.

We actually got invited to speak to the Senate, and that made a big difference. Out of that came our dementia strategy here in Canada. Now, you know, as with anything else, every time there’s a change in our government leadership, those things change. You always have to stay on top of it. 

In March, Canada is reporting again on its Charter of Rights of People with Disabilities. Again, I want to be there. I got a whole group backing me and helping me put all the stuff together again to go back.

“Things need to change, so I’m
going to be the person who helps
to change things in the world
for others living with dementia
because I don’t want them
to go through what I went through.”

Being Patient: You’re also the co-author of a book, How to Live Well with Dementia: Expert Help for People Living with Dementia and their Family, Friends, and Care Partners. Tell us about that.

Fehr: It was written by four of us, Dr. Anthea Innes, Megan O’Connor, Carmel Geoghegan. It’s an honest book. We’re answering questions from a personal perspective and letting people know in the world that this is what we went through, and this is how we got through it, and this is how you can get through it. 

Since it came out, it [has] made the number one best seller [list] on Amazon. Usually, books have to be out a year before it goes to audio. Ours has already gone to audio. It’s important for me because a lot of people with dementia can’t read anymore, but they can hear.

To me, it was amazing that it went so quickly. A few of the professors I know that I work with right across Canada are now going to add it to their teaching. I’m like, “Yes!” because it’s going to help. 

Can I just say one last thing? We often hear people suffer [from] dementia, and I want to clarify that because I don’t think I suffer [from] dementia. I may be struggling with dementia, but I’m not suffering. I’m actually living well.

Katy Koop is a writer and theater artist based in Raleigh, NC.