Before being diagnosed with younger-onset Alzheimer’s in his early 50s, Jeff Borghoff received several misdiagnoses from different doctors and was even put on medication for epilepsy before being accurately diagnosed. As an Alzheimer’s advocate, he believes legislation should be passed that requires physicians to attend education centers where they can learn more about Alzheimer’s to effectively diagnosis people. When it comes to the public, he says people often say to him, “You don’t look like you have Alzheimer’s.” Borghoff takes this statement as an opportunity to educate people about Alzheimer’s and eliminate some of the stereotypes surrounding the disease.
- Borghoff says that Alzheimer’s became his new purpose after diagnosis. He runs Memory Cafés for people living with dementia, where they can gather to do fun activities
- He encourages people who are recently diagnosed not to listen to advice like “Get your affairs in order” because people with Alzheimer’s can still contribute to society in a variety of meaningful ways
Being Patient spoke to Borghoff about how his life changed after being diagnosed with younger-onset Alzheimer’s.
Being Patient: What was it like for you to receive an Alzheimer’s diagnosis when you were living with your dad who had dementia?
Jeff Borghoff: When dementia is not a part of your family, there’s not a lot of information for you. When my father was diagnosed with dementia, I really did not know what it was. I began to slowly learn what the disease was—dementia being the term for various forms of symptoms that we all know about. Once my father was diagnosed, I began to learn about vascular dementia. His condition was brought on by one big stroke and a series of mini-strokes. Later on, we learned that he had mixed vascular dementia and Alzheimer’s. It didn’t click too much that Alzheimer’s might be something that I could possibly get too. In hindsight, it makes me think that I should have thought about that. My grandfather had dementia, and my father’s closest brother died from complications from his dementia. My father eventually passed away from heart failure caused by his dementia. One would think that this would be something you would think about when it happens to you too, but it just isn’t.
Being Patient: What triggered you to go to the doctor to see whether you might have Alzheimer’s?
Jeff Borghoff: My father is the youngest of nine. It wasn’t one of those things where we thought it was a genetic component. I went to a neurologist because I was beginning to struggle with cognitive and memory issues in the type of work I was doing. It was software development, and I was the technical lead for various projects.
Being Patient: What type of issues were you experiencing at work?
Jeff Borghoff: I was forgetting things; what someone had said. I was interpreting things incorrectly. I was having difficulty juggling multiple tasks at the same time, which I used to be fantastic at. I was really starting to struggle. I was 51 years old, and I had a bunch of dudes on my team who just graduated from college with computer science degrees. I thought, “Well, maybe I’m getting older.” I was trying to blame it on something instead of accepting the obvious that I was showing symptoms of Alzheimer’s.
I was so anxious about it that things began to manifest physically. I began to get a nervous twitch in my face. Shortly after that, my face began to droop. They were thinking that I was having a stroke. I went to the doctor, and the first neurologist diagnosed me with epilepsy. I was on epileptic medicine for months and that didn’t help. Then I went to another medical center, and they said it wasn’t epilepsy, but they didn’t know what it was. Honestly, I think I went to four or five hospitals. The issue was that each doctor was trying to help or diagnose me in their specialty. Finally, my wife and I said, “We have to go to a doctor who can really tell me what’s going on.”
Being Patient: We hear about misdiagnosis a lot, especially when people are in their early 50s. At that time, did you realize that something may be wrong with your memory?
Jeff Borghoff: In my situation, it wasn’t so much my memory. My cognition, processing of steps, multi-tasking and balance were affected. The symptoms of Alzheimer’s can vary, and memory is just one part that can be affected by the different forms of dementia. I got diagnosed and did neuropsychological exams. They also did a spinal check and found fluid; at that point, they knew it was Alzheimer’s.
Being Patient: Were you shocked by the diagnosis?
Jeff Borghoff: Before I was diagnosed, I had to ask myself if I was going crazy. I thought I was having a nervous breakdown. My wife explained that I was not having a breakdown. She said, “Jeff, there’s something wrong with you, and it’s not psychological. Something physical is going on in your brain.” My wife knew.
Being Patient: What is it like for you to live with Alzheimer’s day-to-day?
Jeff Borghoff: When I was officially diagnosed with Alzheimer’s, it was like a double-edged sword because it is a terminal disease. However, my day-to-day life is pretty good, but I do have limitations. I have to stay off ladders because of the balance issue. I have to observe those things and understand that this is my life now. There are other things that I am very active on a day-to-day basis. I brought over the skillsets I learned over 20 years in my information technology profession. Now, I work on websites and social media and wrap that into an Alzheimer’s awareness and advocacy lifestyle.
Being Patient: Did you keep working after you were diagnosed with Alzheimer’s?
Jeff Borghoff: I did not feel like I had to quit, but I was encouraged by my wife and neurologist to retire. They could not find a position in the company for what I was doing before, but the important thing was that my wife and neurologist did not want me to have that stress and anxiety.
Being Patient: Did your diagnosis change how you’re living, physically and mentally?
Jeff Borghoff: After I was diagnosed, I was accepted into a clinical trial and have gotten good results. I also believe that there are modifiable and non-modifiable risk factors. Non-modifiable risk factors are genetics. Modifiable risk factors, there are a lot of things that you can do to help. If you exercise your heart, you can exercise your brain. Twenty to thirty minutes a day—and eating a Mediterranean-style diet is helpful, too.
Being Patient: Is there anything that you think doctors can do to improve how they diagnose people with dementia?
Jeff Borghoff: Doctors need to test people for Alzheimer’s even if they are young. It’s really surprising to me that in our society and culture, we still have to go through a year of diagnoses to see if it is Alzheimer’s or not. Legislation has to be passed to build centers of excellence and create education centers for physicians across the board to better prepare their staff on how to work with people who have Alzheimer and more effectively diagnosis people. A lot of times, things don’t change unless there is a law.
Being Patient: Have your brothers been tested for Alzheimer’s?
Jeff Borghoff: My brothers have not been tested. My mom got a genetic test from one of the online DNA sites, and she doesn’t have the genetic precursors.
Being Patient: Being in the Biogen study, are their limitations or other things you want to try?
Jeff Borghoff: It’s been on my mind for a while to try other things.I’ve been thinking about CBD oil because I’ve heard quite a few of the people in my community have tried it, and they feel they’ve had some benefits from it. I discussed that with my clinical trial coordinators and doctors, and although they can’t prescribe that legally and ethically, if I weren’t in the clinical trial, they’d say “Go for it.” But because I am in the clinical trial, I’m very leery about introducing something else that could affect the results of that trial. The efficacy of me being in this trial is whether this trial is going to work for hundreds, thousands or potentially millions of others too, so I always have to consider how what I’m doing could affect or skew the results for other people.
Being Patient: What gives you purpose in life now and where do you think your future is headed?
Jeff Borghoff: I’ve always considered myself to be a servant leader, in serving other people first and putting them before myself. Obviously, that starts with your family, wife and children, but it extends out to the larger community. When I was diagnosed with Alzheimer’s, that became my new purpose. My new purpose wasn’t coding and writing software to develop an enterprise system any longer. The thing that was purposeful to me about servant leadership was, what’s the greatest impact that I can have on my family and my micro- and macro-community? The way that I do that is serving in an awareness and advocacy role, and helping other people who are living with this disease. Once a month, I run a Memory Café. People come in who are living with Alzheimer’s or various forms of dementia. It’s a time when supporters can get together and leave the disease at the door and do something fun. This weekend, we’re painting. I’ve never really painted, so it’s a new activity to learn. It will fire up some new neurons that I didn’t know were there and hopefully help some other people.
Being Patient: What do you tell people who just got a diagnosis?
Jeff Borghoff: First, I try to understand their story. Everyone has a unique story as to where they got to where they are. I listen and ask them to tell me about what’s going on, as well as how they’re feeling or what they’re struggling with. I try to encourage them to not listen to things like “Get your affairs in order.” I try to let them know that they are still here and they can still contribute if they want to. There are things or activities that you can do if you’re able. There are organizations that will help you. It’s, what can I do to encourage you, the person living with Alzheimer’s, to continue to live a purposeful life? Or maybe if you were always wondering what your purpose was, now that you have Alzheimer’s, this can be your purpose. You can speak out and become an advocate.
People have said, “You don’t look like you have Alzheimer’s.” A lot of times when people say that to someone with Alzheimer’s or dementia, some people get offended or upset. I choose not to. They say, “You seem normal.” My wife would say, “Try living 24 hours with my husband. He’s a nice guy and everything, but he walks around in circles sometimes. Then you’ll see what Alzheimer’s looks like.” It is an invisible disease and disability. When someone says that to me, I use that as a great segue into helping someone understand what Alzheimer’s and dementia are. If someone says that to you, take that as an opportunity to ask, “What does a person with diabetes look like?” Make the conversation a little lighthearted, but try to help them understand what Alzheimer’s and dementia are because that’s part of the awareness we can raise; we can change the stereotypes associated with this disease.
This interview has been edited for clarity and length.