How One Woman Took Control After an Early-Onset Alzheimer’s Diagnosis

This article is part of the Journey to Diagnosis series.

When Alice Bailey was diagnosed with early-onset Alzheimer’s at 56, some of the challenges were all too familiar. She had witnessed her mother’s experience with Alzheimer’s years earlier, and recognized some of the same gaps in care and communication with her diagnosis. Receiving no resources to help her process her diagnosis, she leaned on family, faith, and community to find support. Today, she’s a member of the Council of Black Dementia Minds, where she shares her story and helps build awareness about dementia in communities that are often underserved.

In this Live Talk with Being Patient’s Mark Niu, Bailey reflects on the moment she knew something was wrong with her memory, the frustrations she faced in the healthcare system, and the steps she has taken to live well despite her diagnosis. From addressing the stigma of early-onset Alzheimer’s to advocating for greater awareness in the Black community, she continues to use her voice to inform others.

Being Patient: Can you take us back to the moment you first realized something wasn’t quite right with your memory?

Alice Bailey: Yeah. My mother had suffered from dementia back in 2014, and in 2017 I started noticing some of the symptoms within myself. I was repeating questions that people were asking me. I was constantly losing things. I was getting lost while driving, and I was always really behind in my work tasks. I found myself staying later at work because I was the last one to get all my work done. I really couldn’t focus and complete my tasks at work. That was really frustrating.

Being Patient: When did it get to the point where you said, I’ve got to find out what’s wrong? What’s the first step in recognizing that something’s not quite right, that you should seek medical attention?

Bailey: I think it was the day that I was driving to a restaurant that I was very familiar with, and I got on the highway and I couldn’t find the exit to the restaurant, even though I’d been there a bunch of times, and I was in a total panic. I remember calling my husband in a panic. I was crying because I couldn’t figure out how to get back home. I wanted to go home, but I couldn’t figure out where to go. I was in a neighborhood I was unfamiliar with, and he talked me through it. I was about an hour late getting to that restaurant.

I said I know something’s not right. I Googled a neurologist on my own, [thinking] maybe I could just talk to someone and they would reassure me that, just because some things are similar within me and my mom, everything’s fine. Well, then I found out everything’s not fine.

Being Patient: Did you call your general doctor? What was the next step?

Bailey: I went straight to a neurologist. Luckily, my insurance didn’t require a referral. I called a neurologist close to me and made an appointment on my own. We talked a little bit first, and then she gave me some written tests and memory tests that were very annoying — count backwards, or do the alphabet from Z to A, which would make anyone crazy. That first day, everything was fine. She noticed that I had some memory issues with repeating the words she’d given me, and then she suggested that I get an MRI.

Being Patient: This is how many years ago, and how old were you at that time?

Bailey: This was 2017, and I was 56.

Being Patient: Was there some miscommunication early on with the doctors about what you should do? Did you feel there was adequate follow-up?

Bailey: No, I did not feel there was adequate follow-up. We only saw each other every six months. My symptoms were developing rapidly, and then she would want to know, within that six-month time period, how things were adjusting. Some things I could remember and some things I didn’t.

One of the things that really helped me was bringing my daughter along. She took notes, and she would repeat to the doctor what she thought was going on. That helped a lot, because there were things I had forgotten.

She also had to remind the doctor of things we were supposed to do, because this doctor wasn’t very organized. She forgot that I had certain tests scheduled, or that I was supposed to see other doctors. 

Being Patient: And your mother’s diagnosis — was she diagnosed at an older age?

Bailey: Yeah, she was in her 70s. She would take us out for a drive, and then we’d find ourselves in some state, just driving for hours. We’d say, “Do you know where you’re going?” She’d say, “Oh, we’re just taking a little drive.”

Years went by, and she started coming over to my house saying she’d heard from my brother, which she hadn’t, and that they were going to go fishing. She would gather her gear and wait for him. I took her to doctors, and they kept telling me this was part of her aging process, that she was fine.

It wasn’t until I took my family to Orlando, and when I returned, I had a call from the police saying that my mother was in the hospital. She had walked into someone’s backyard during a picnic and thought it was her house. They sent her to the hospital. She got a PET scan, and they found she had advanced Alzheimer’s. This was only two or three years from the time I first noticed something was wrong. 

Being Patient: Were you given any resources when you were diagnosed?

Bailey: I wasn’t given any resources. I didn’t get a pamphlet. I didn’t even get a chance to ask what Alzheimer’s was. I was given a drug that she told me may or may not work. If you don’t like it, you don’t have to take it. If you have complications, just don’t take it, because it’s really not going to help you. It was very cut-and-dry communication.

My family and I were confused. It wasn’t until we went to a seminar at my daughter’s church, where someone from the Alzheimer’s Association was speaking, that we found a lot of information and were referred to other resources.

“ I wasn’t given any resources. I didn’t get a
pamphlet. I didn’t even get a chance to ask
what Alzheimer’s was. I was given a drug that
she told me may or may not work.”

Being Patient: Touching base with the Alzheimer’s Association, you decided to get involved in advocacy work.

Bailey: I’m on the Council of Black Dementia Minds, a group where we can talk about our troubles, frustrations, everything we deal with on a daily basis. Sometimes we get frustrated with caregivers, or think we’re not getting adequate care. We can talk about that, and then at the end, we can also pray and be together in Christ. It’s been a phenomenal experience that people from all around the world can get together, pray, hope for a cure, but also deal with the day-to-day issues that we have.

Being Patient: What have you discovered in terms of awareness and resources?

Bailey: There is a lack of awareness in the Black community. For some reason, the Black community is not aware of signs of Alzheimer’s, even though we’re getting diagnosed more.

When you go to a nursing home, there are very few African Americans there compared to others, so we’re not getting adequate care once we are diagnosed. I can just imagine many African Americans suffering at home with their caretakers, confused as to what to do next. If they were treated like I was treated, they’re probably at home suffering, and their caretakers are very frustrated. It’s a disparaging future, but it’s getting better. I’m trying to rectify that in my community.

Being Patient: How have you incorporated lifestyle changes?

Bailey: At first, I wasn’t given any advice about nutrition, diet, or exercise. I was literally told to go home and die. Through advocacy and seminars, I learned how health and nutrition are important, getting exercise is important, and talking with friends and communicating with others is good for the mind. Certain games were very helpful too. If it hadn’t been for those resources, I don’t know where I would be. Most likely I would be at a further progression.

“At first, I wasn’t given any advice about
nutrition, diet, or exercise. I was
literally told to go home and die.”

Being Patient: As you go out and speak, what’s most rewarding about it, and what have you learned?

Bailey: With early-onset Alzheimer’s, people are young. When you tell them you have Alzheimer’s in your 40s or early 50s, it’s hard for them to believe, because their [image of Alzheimer’s] is people slumped over and drooling, not able to walk or talk. I’m there to show them that’s not the case. It’s early for me. I don’t know how much longer I have, but I know I’m doing well today. They’re astonished that it’s not a death sentence right away.

Everybody’s symptoms are different. Sometimes I have to convince people that I do have it. They say, “No, you don’t. You don’t look like you have it.” But I say, yes, I do. You’re not with me 24 hours a day. You don’t see me leave my phone in the refrigerator, or forget to wipe after using the toilet, or forget to zip up my pants. One time I had to have all my keys and belongings around my neck in order for me not to lose them. That was frustrating but necessary.

Being Patient: Looking back, what do you wish doctors or the healthcare system had done differently when you were first diagnosed?

Bailey: I wish my doctor had taken more gentle care with me. When she knew she was going to give me the diagnosis, I wish she had said, bring a loved one with you next time. I wish she had given me a phone number for the Alzheimer’s group, a pamphlet on what to expect in the next few years. Unfortunately, none of that was given. It was a hard way to go. I had bouts of depression and anxiety. A piece of paper or a phone number could have made a huge difference. 

Being Patient: Tell me about the role your family has played, and your advice for how families can work together.

Bailey: The first thing is you need to trust a family member to go to all doctor’s appointments, because you’re not just going to need help with neurology. You’ll need help with physical therapy, ophthalmology, any doctor you see. You need someone to take notes and remind doctors that you have Alzheimer’s so they know how to treat you. Several times I’ve told doctors I have Alzheimer’s, and they spent the whole appointment talking to my daughter instead of me. That was rough. I have one daughter who gives me tough love. That helps. Sometimes when you lose something, it feels like losing your lifeline. My family is very supportive. 

When my mother first got diagnosed, I didn’t know what to do, and I had to put her in a nursing home early. That guilt bothered me a lot. I wish I could have been more supportive, but I didn’t know what to do.

Being Patient: Finally, if you could offer your words of advice to those newly diagnosed or supporting a loved one through early-onset Alzheimer’s, what would you say?

Bailey: First, I want to tell people it’s going to be okay. Seek God’s help through prayer. It’s okay to be afraid. There’s nothing wrong with telling somebody I’m worried about the future. Find support in your family. Positive family members are the most important. Those are the people that you need to surround yourself [with]. Try not to be around people that keep saying to you, there’s nothing wrong with you. All you need to have is some coconut milk and you’ll be fine. Or I heard on the internet, if you take this supplement, your memory will come back. Those are the kind of people that really will mess you up. 

Find help through your online resources. Most people have a cell phone [or] an iPad. There’s a lot of resources out there. Go to your local church. Sometimes they have meetings about Alzheimer’s in your local churches, and it’s going to be okay.