Since Terrie Montgomery was diagnosed with early-onset Alzheimer’s in 2015, she’s been an advocate for her own health — and the health of others. Today, she’s rallying for equal access to Alzheimer’s diagnostic care and treatment for the tens of millions of Americans who rely on Medicare.
This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai.
If Alzheimer’s advocate Terrie Montgomery could describe herself, she’d tell you she’s “versatile.”
Throughout her career, she’s worked as a tax consultant, customer service manager, public speaker, social worker and accountant.
With a degree in human resources management, Montgomery has always loved people, and she found her true calling as a HUD representative helping individuals and families reclaim their independence.
“That was my joy to actually find people and pump it into them that they could do this. I wanted them to see in a better light,” Montgomery told Being Patient. “So I helped a lot of them become independent and acclimated into the occupations they loved.”
And then in 2015, she started forgetting names.
“I got turned around coming back from lunch one day. Then I forgot how to fill out these special reports we had to do. I forgot it and I was the one who taught the person in HR and finance how to do it,” she said.
Montgomery ended up leaving the workforce because she couldn’t keep up pace or remember people. She sought a medical opinion, but because she was in her early 50s, doctors shrugged it off and told her, “You might be at the change of life. You might be working too much. So then he said, ‘Let’s just watch it,’” Montgomery said. “Six months later, and tests, and that was it. I had it.”
Some might consider getting a dementia diagnosis to be the beginning of the end, but Montgomery saw it differently. Her disease — after two back-to-back cancer diagnoses — seems to do nothing but fuel in her a tenacity to keep going, especially when faced with myriad health care system disparities.
Montgomery is also a founding member of Voices of Alzheimer’s, an advocacy organization of people living with Alzheimer’s and other dementias. She spoke on behalf of Voices of Alzheimer’s at Rally for Access in Washington DC on March 15, 2022, where she discussed the Centers for Medicare and Medicaid Services’ decision to decline to cover FDA-approved treatment aducanumab.
It’s part of a pattern, Montgomery and her colleagues at VOA say, of CMS discriminating against people living with Alzheimer’s — and it deepens the existing racial and socioeconomic divides that already exist around Alzheimer’s risk, diagnosis and care.
Research shows that Black and Hispanic Americans, who are already at an elevated risk of developing the disease, are typically the last to get accurately diagnosed. They need access to affordable preventive and diagnostic care — and once monoclonal antibody drugs are more widely available, they will need not only Medicare coverage of the drugs, but Medicare coverage of PET scans, which are critical to diagnosing Alzheimer’s and to drug trial participation. CMS doesn’t cover these procedures either.
Montgomery is fighting for change, and she feels good about what’s to come. As she said, “Nothing is going to stop me from speaking up right now. I’ll speak up until I can’t anymore.”
Here’s more from Alzheimer’s advocate Terrie Montgomery.
Being Patient: When did you start noticing you had a problem with your cognition?
Terrie Montgomery: Around 2012 to 2013, I released all my clients, up to 200 of them, because I was becoming different. Forgetting. I sort of let things go, and that wasn’t like me. As I progressed more, in the next few years, I couldn’t remember passwords.
Being Patient: Tell us about your health journey since then.
Montgomery: After my Alzheimer’s diagnosis in 2015, I was diagnosed with breast cancer in 2016 and again in 2017. Not only did I have a three-month waiting list before they would perform surgery, but the doctor (for my initial diagnosis) said that he would make it easier for me to handle by giving me a local lumpectomy instead of a mastectomy. I pursued a second opinion in 2017 and they discovered I had malignant breast cancer in both breasts. (The first doctor) was not thinking about my welfare and my care, because you know, I have dementia that they don’t really care.
In 2019, I had another experience about a disparity, which was I went to a new doctor for my routine exam (after relocating). She says, “OK, well, I’m just gonna subscribe you some Aricept.” I’m like, “You know, I have Alzheimer’s, early-onset; you don’t even have my records. You don’t know what type of dose I’m on, or what I’m taking currently.” I was dismissed.
Soon after, I went to the doctor because I was having problems with my stomach. She said it is probably just my diet, what I’m drinking or not enough water. I should be okay. I pushed back again and went for a second opinion. That ultrasound revealed I had a pelvic mass. Doctors failed to tell me breast cancer can turn into cervical cancer. That’s when I learned to really speak up. I asked for more tests. Those revealed the mass was benign.
In 2022, the cancer came back when I had something that was wrong with my thyroid, but I was never made aware of that. So once I came for my second opinion, they had the thyroid tests, and they always will follow and see how those numbers were. I wind up getting my thyroid removed in April of this year. And when I had it removed in April of this year, I took a bad hit cognitively.
They also told me that it was possible I would lose my voice. My spirituality is strong, and as you see, I’m talking to you today.
Being Patient: What prompted you to get into health care advocacy?
Montgomery: I was a patient that had seen how doctors treat people with dementia, and that’s why I’m so passionate about health care. You are treated a little differently (because of dementia). Because of how many people if they don’t speak up, or if they don’t have someone to represent them, they can be dead.
I cry out so much as to stop limiting what people can do if they have Alzheimer’s. They deserve the same care and have the same body as someone who does not have it.
The same with medications and clinical trials. So a medication is available for this group over here but it’s not available for that group over there. And if we still happen to get something else along the way like I did, that’s more for them to study and research that they can do, and people to be able to participate regardless. You’ve got to have a group that says we don’t care if you got Alzheimer’s, we don’t care. We want you to do this, or at least we can make a difference so that we all can contribute.
Being Patient: What do you want people to know about Alzheimer’s patient rights?
Montgomery: We are entitled to the same rights as someone who does not have it. Just because we have Alzheimer’s does not mean that we may not get that we may not get something else. And then we do get something else, why can’t we get treated for that too? Unless we say something, it’s not going to get any better.
I just think that whatever advancements and our medicines that are out there to help, that it’d be available to all not to some. And then if there’s a way that we all can make a contribution towards our medicines, put it out there and give us the opportunity to contribute. Solutions should be for all, not for some.
Being Patient: What keeps you going and what do you tell others living with dementia?
Montgomery: I’ve kept myself busy. I always have to stay busy. I tell people as you begin to lose things, just focus on the things that you can do whatever they may be, and find ways to get through it.
Yes, when you have these problems, you’re gonna forget, you’re gonna pause, you’re gonna need time to grasp things on his journey.
I intend to do this all the way to the point where I can’t. I may forget, you know. But the bottom line is that I shall fight until the end and just make sure that other people with this disease get treated fairly.
I’ll never give up. Never.