Normal Citizen of the Year Adam Nielsen is living with early onset Alzheimer's disease. He and his wife Dayna Brown are doing so publicly and intentionally, to support others who may be going through the same thing, and as part of an advocacy effort.
Nielsen said his perspective changed after the diagnosis in 2023.
“First, there was a period of shock. It wasn't overwhelming, but it did force you to think about life and where you stand from a health perspective,” said Nielsen. “It hasn't seemed to have progressed quickly. And for that, I'm grateful.”
He does notice differences. Details go by the wayside. Even though he knew something was wrong, the precipitating event to look for a firm diagnosis was when he got lost one day.
“That shocked him. Until then, he was like, I'm fine. I don't notice a difference," said Dayna Brown, a Unit 5 school official. "We noticed differences. But I think when he got lost, he was fine in the moment. In fact, he stopped and got a coffee when he was lost and didn't realize he was missing for three hours. He knew where he was, but he just knew he couldn't get back. But it took years off my life.”
The family had conversations. Until then, a doctor had said it was aging, stress and so on. Brown said her 24-year-old daughter pushed.
“It was her who said, you’re not advocating for him. And that's when we decided to look further into what was wrong,” said Brown.
Leaning on technology
Nielsen and Brown are not terribly tech-oriented, but Brown said technology has now become their friend.
The day he got lost, Nielsen did not have his phone. Now, he is not supposed to be anywhere without it. Just in case, they bought a new Apple watch that has a standalone phone in it that he can use to make calls in a pinch.
“We Apple AirTag him everywhere. ...This morning, I couldn't get ahold of him to show up for the interview. We recently had cameras installed in the front and back of our house. I was able to speak into the camera and say, 'Adam, just a reminder, you need to be at WGLT,'” said Brown.
In the past, she would have had to leave work and go home—worrying all the way.
“Technology has just been a savior, and will give him independence a lot longer,” said Brown.
They also are exploring an Amazon Alexa smart speaker as an assistive device and looking for something to help Nielsen navigate the many menus of a television remote.
They write things down a lot more. Nielsen is independent. He checks in so people know what he’s up to.
“Being lost and not being able to find my way back to the post-game tailgate at Lewis University is something I still think about, that feeling of frustration. I felt like I drove around for 20 minutes, but it was hours, and everybody was looking for me,” said Nielsen. “I don't want to repeat that.”
It's not always easy. Brown said Nielsen sometimes doesn’t want to work hard to get complex things done. She and their daughter remind him he can do hard things. He said he views it as encouragement, not nagging.
“I understand it's coming from a place of love and assistance. Sometimes, it's easy to take it personally, but those are short lived moments,” said Nielsen.
Accepting support
Proactive people with a research mindset like Nielsen and Brown might have a leg up in finding services and knowing what to look for, but Brown cautioned no one knows everything. At first, they thought they had no need for an offered social worker.
“Asking for help is hard," she said. "At some point I realized asking for help doesn't diminish who you are or who Adam is as a person, and it's okay to use these supports. Having a social worker has actually been a great opportunity for us. And Adam is involved in a great buddy program."
“There is a first-year medical student in Chicago who has been paired with me, and we spend time with her when we're up in the city. It gives her a chance to spend time with someone who is living with Alzheimer's. It has been a nice partnership. It's something that I look forward to,” said Nielsen.
Brown said the buddy may well be a part of Adam’s support team long after the program is over.
Nielsen still drives. He plays pickleball and goes to the gym regularly. He enjoys baseball games, Bloomington Bison hockey and going out for good food. His humor is unabated: sharp, insightful. It flows from life encounters with the widest range of human foibles and folly.
He is capable of a lot. Alzheimer’s does not always look like what people may have thought, said Brown. This does not mean there are no hiccups. His short-term memory is not good.
“This morning, he went down[stairs] to do two things and came up with a cup of coffee, and neither one of those things he was sent to do was a cup of coffee,” said Brown.
There are good days and bad days. Brown said the bad days are short-lived.
“You have the ability to immediately forget your bad mood. Try to use that to your advantage whenever you can,” smiled Nielsen.
Early diagnosis also can help people fend off the later effects of the disease. Drugs like Leqembi may be an option for people in early stages of Alzheimer's. There are drug trials as well, which may require genetics and other testing to qualify. Adam didn’t qualify, although the family still holds out hope a trial will be an option that would slow progression and allow a longer stretch of high-quality life.
Early diagnosis can impact family security. Nielsen had to retire a few years early.
“We've made sure our finances are in order. We've made sure my name is on accounts. We've transitioned some things. Sometimes people wait so long that they don't have time to make these thoughtful decisions,” said Brown. “My hope is that Adam can remain in our home as long as he can, but time gives us the opportunity to have these discussions, while he can play a role in decision making.”
Local advocacy
In speeches around the community, Nielsen and Brown are making a conscious choice to be public about the disease.
“So, if I'm ever lost, someone will be able to find me,” Nielsen joked.
It’s more than that, of course. Nielsen and Brown have dedicated themselves to wearing purple in support of the Alzheimer’s Association and to publicizing available resources.
“I think it's important for people to know who you are. I've always tried to live transparently and you know, there are a lot of people who have this,” said Nielsen. “We're all in this together.”
Nielsen and Brown have lives that have been very public.
Nielsen came out of radio and TV and has a mammoth network of friends and professional relationships through his former positions on the Normal Town Council and as a lobbyist for the Illinois Farm Bureau. Brown came out of newspapers and is lead spokesperson for the Unit 5 school district. They are deeply woven into the fabric of the community and want to use that to combat any stigma lingering from a time when the disease was not spoken of and not as well understood.
“There's no shame in having Alzheimer's. There's no shame in caring for someone who has Alzheimer's," said Brown. "When we speak, every single time, someone comes up to us afterwards. They're there because they're either worried about themselves, or they're worried about a loved one, or they're dealing with a loved one who has the disease and they haven't felt comfortable sharing.”
By being open, Nielsen and Brown said they show it’s OK. They do still find some problematic attitudes toward the disease. Brown said sometime people tell her they have seen Adam and "he’s really doing well."
“Of course, he's doing well. People are getting diagnosed much younger,” said Brown.
They push for early diagnosis that can help people have a high quality of life much longer.
“Knowing changes everything. It changes everything you could do, you could plan,” said Brown.
There is a huge gap in the community for people living with Alzheimer’s, she said. Nielsen doesn’t need a lot of services now. Eventually, he will. There are facilities for people to relocate to when it is time. In between, not so much.
“I'm aware of several people who've had to make that move to a facility earlier than they might have. I'm not aware of any day services right now where someone can go and spend the day,” said Brown.
In larger cities, she said they do have some of those things, adding in Bloomington-Normal, it's a challenge that needs work.
National advocacy
In his working life, Nielsen was an issue advocate for the Farm Bureau. He had tight relationships with lawmakers and their staffs. That remains a plus in his work with the Alzheimer’s Association, pushing for funding for treatment programs and research.
“I'm very comfortable with that. When you go out to Washington and you see your friends, they're still your friends, and they get to see you in a different situation, advocating for a new cause,” said Nielsen. “I feel like I have some credibility when I walk in the room. They know me. They've known me for a long time. That's helpful.”
Nielsen used to spend time with volunteers at the bureau, coaching them up to go to the Hill and talk about things needed in agriculture in Illinois. Now he’s the one being coached up to talk about needs on the Alzheimer's front. He doesn’t need much coaching. The Hill remains familiar territory.
“He's amazing in those opportunities. He gets into the Capitol and he's leading the group, and he walks through, and we run into people, and he's getting texts on his phone. Did I just see Adam Nielsen in the Capitol?” said Brown.
The group ran into a Northern Illinois congressman who stopped Adam in the hallway to ask about his retirement.
“And he was able to use that opportunity to say, 'Well, I retired from my professional life, and now I'm advocating for my personal life,'” said Brown.
“We're not sitting at home twiddling our thumbs … you know, woe is us! We have opportunities to go out and talk to policy makers who are wrestling with these issues. … It's just one small issue in the midst of hundreds of others, but it's our responsibility as advocates to go out there and put a face on it and a name and to tell them what life is like and what we need,” said Nielsen.
They know the work may not help Adam. They have two adult children, though, and there is a genetic component to the disease.
“We're not only advocating for Adam, we're advocating for future generations of people who may be facing Alzheimer's,” said Brown, adding she heard about what Nielsen did for years but never witnessed it. Now she is. She called it inspiring.
“I'm so grateful that we've had the chance to do this together. ... They're asking him, which way do we turn? He's taking us on shortcuts. It's absolutely amazing. The man who can't tell us what he ate for lunch can lead us through the capital of the United States like he did it yesterday,” said Brown.
“I know where I am. I don't get lost. I know the protocols. I think I've been a resource for my friends in the Alzheimer's Association on those trips, and that's being an advocate is. ... I look forward to telling my story and making sure that when we leave, that we'll be remembered,” said Nielsen.
