Behavioral Variant FTD: A Navy Vet Shares His Story

This article was brought to you in partnership with Eisai and is part of the Journey to Diagnosis series.

U.S. veteran Chris Tann had had a successful career in the U.S. Navy. But when he started putting the milk in the cupboard and searching for crackers in the oven, his wife, Debra, knew something was wrong. She began jotting down each unusual incident, hoping her notes would help doctors connect the dots.

After years of uncertainty, Chris was diagnosed in 2019: He had behavioral variant frontotemporal dementia — a form of dementia that often changes personality and behavior before memory is affected.

Today, Chris and Debra are determined to share what they’ve learned about living with this misunderstood condition.

Chris is an active member of the Black Dementia Minds support group and a participant in a long-term clinical trial at Vanderbilt University. In this conversation with Being Patient’s founder Deborah Kan, the couple open up about the early signs of bvFTD, caregiving strategies, the role of faith, and why they believe awareness and research are essential.

Being Patient: Chris, can you tell me first about when you were diagnosed with FTD?

Chris Tann: I was diagnosed in 2019 with FTD.

Being Patient: Can you tell me about some of the earlier signs before diagnosis, what you were experiencing before you went to the doctors?

Chris Tann: Me personally, I didn’t experience anything. It was business as usual for me. I was doing everything I normally do, wasn’t hurting anybody, wasn’t forgetting anything, to my knowledge I wasn’t. Until my wife brought it to my attention. To me, it was business as usual. I was working, no problems at the job. Everything was going okay. At least, I thought anyway.

Being Patient: Debra, what were you seeing in Chris that was out of the ordinary?

Debra Tann: Chris has a diagnosis of behavioral variant FTD. What I was noticing was a lot of behavioral changes. It was the type of situation where I would look at him and say, that’s the same guy that I married 25 years prior, but behavioral things had changed significantly. At least to bring me pause to pay closer attention.

Chris just said something poignant I want to emphasize. Oftentimes, particularly with FTD, there’s this thing called anosognosia, a lack of self-awareness. People around them, family members, spouses, loved ones, pick up on things faster. I like to think that sometimes people living with FTD are protected by anosognosia. They lack awareness of the things manifesting in their lives and around loved ones.

“I like to think that sometimes people living with FTD are protected by anosognosia.”

Being Patient: Can you tell us a little about what you were experiencing and noticing, Deborah?

Debra Tann: When we went to the doctor, I had taken notes over a long period of time. I picked three glaring things to report. One, he put the milk in the cabinet. Secondly, he was looking for crackers in the oven. Thirdly, he placed an Armor All for tires in the bathroom, underneath the sink. Those three things were alarming enough for our doctor to say, I am going to give you a referral to the neurologist.

Being Patient: When that was happening, would you say, Chris, why are you putting the milk here? Do you remember, Chris, what was your reaction?

Chris Tann: My reaction was, I’m not the only person that lives in this house. I don’t know how it got there. I definitely wasn’t aware of doing those things.

Being Patient: What was your experience when you both went to the doctor? How long did it take before Chris was diagnosed with the behavioral variant of FTD?

Chris Tann: 2017 is when we went to the Mayo Clinic in Jacksonville, and they ran a battery of tests. I was first diagnosed with MCI, mild cognitive impairment. Then in 2019, we were diagnosed here in Valdosta with FTD.

Debra Tann: That’s exactly how it manifested. It took about two years. On average, it takes three to four years for individuals to get this diagnosis. We happened to be blessed with someone who over 18 months — two years between evaluating Chris, talking with me, engaging with us — was able to diagnose this as FTD.

Being Patient: One of the things you said that stands out is you were taking notes. A lot of people wouldn’t think to do that without knowing what was wrong. What made you keep a detailed account?

Debra Tann: You only have a short period of time with your doctor. I encourage individuals listening to look at it from a neurological perspective versus a psychological perspective, because a lot of times this is misdiagnosed as bipolar or schizophrenia.

The behavioral change was glaring. I knew because it was happening in volumes, I had to keep notes. I can’t keep everything in my head. I had to take notes. I was journaling about my experience. It was easy for me to give the doctor what they needed to help us get an expedient diagnosis.

Being Patient: Chris has a diagnosis of behavioral FTD. What does that mean on the spectrum of FTD diagnosis?

Debra Tann: Typically, one has either behavioral variant or language variant. Bruce Willis is experiencing the language variant, [which affects his ability to use] words, sentences, [and] acting because you must use words.

The other variant, the most common, is behavioral, where you see behavioral changes. They look the same, but they’re acting differently. If you’ve been married 25, 30 years, you know your spouse. You can identify when things are different. Case in point, I remember early morning, two or three o’clock, I was in the living room weeping. I was sad. Chris came in and said, why are you crying? I said, I am hurting. He was sitting far away. That was a cue right there. He sat there for a couple of minutes and then said, okay, I’m going back to bed. Empathy typically leaves first with FTD. That was the total antithesis of my husband. He would have sat next to me, embraced me, stayed up with me, encouraged me. The point I’m making is you will know the difference if you’re paying attention.

Being Patient: Tell me about that time once you got the diagnosis. What did you do, how did you feel, what are you doing today?

Chris Tann: When I first got it, I can’t describe the word, but it wasn’t a good feeling until my faith increased, and that helped me. Most of all, it’s my wife. The way she stepped in and got things in order for me. My journey is easier than most people’s. I was still working, still doing everything I did before diagnosis. There were some memory lapses sometimes, but nothing serious. I had to adapt. I started putting things in place where I knew they’d be, unless my wife moved it. From here on out it’s about adapting and preparing myself. If I progress further and it gets worse, it is no problem to quit driving, or quit doing anything that would cause harm to me or anyone else.

Being Patient: I know you were a U.S. veteran. What were you doing at the time around diagnosis? What was your profession?

Chris Tann: I was working at the commissary on a military base. I was a contract monitor. I dealt a lot with numbers and reports. It kept my brain triggering.

Being Patient: Did you notice changes in what you could do or attention or work performance?

Chris Tann: I didn’t. I told my boss, if you see me doing anything different, let me know. I told her I was diagnosed with dementia. She said she would. But all the years since diagnosis, up until now — I’m getting ready to retire — I’ve received outstanding performances every year. That was a good sign for me.

Being Patient: Can you tell us about managing Chris’s diagnosis and what might help other caregivers?

Debra Tann: In 2016, I retired. That allowed me to be home full time. That’s when I noticed the most. Had I continued working, I would not have known as much. Being at home, I had flexibility to research. Research comes naturally for me, so I did that. An answer to your question as to am I coping, I have sunk my entire career, life, and ingenuity into this space. I’m on top of most things, not just FTD, but Alzheimer’s, vascular, Lewy body, Parkinson’s. I have to be because I’m doing things local, state, national, and even internationally. That is my therapy.

Being Patient: Chris, I know you are involved in a clinical trial. Are you enrolled in a study?

Chris Tann: Yes, that is correct. At the University of Vanderbilt, a noninvasive clinical trial. We both enjoy going there once a year. It’s been good. We’re in our last year, then we’ll see what happens.

Debra Tann: It’s a qualitative study, observational. It gives Chris autonomy as to what he will or will not do as a participant. It’s five years, longitudinal — they’re looking at it to see what is going on behaviorally. It’s noninvasive, although he has the option of a lumbar puncture. The study affords flexibility in how he’s going to participate.

Chris and I always say clinical research is essential. We tout [clinical trials] because we know how significant they are. Our bottom line: yes, we are participating and strong proponents for clinical research because if it doesn’t serve us, it will serve many others. We’re excited to contribute.

“…we are participating and strong proponents for clinical research because if it doesn’t serve us, it will serve many others.”

Being Patient: Deborah, have you noticed changes in Chris? How would you describe his condition today?

Debra Tann: I’m glad he’s retired. Yes, there has been progression. That doesn’t startle me and I doubt it startles Chris. Whatever you’re told, you usually know ahead of time because you live with it. I wait till we go to the doctor and see what they say. Usually it’s the same. We see things through the same lens. We keep it moving. We don’t spend our time with the glass half empty, we’re always looking at the glass half full.

Chris Tann: I ask [the doctor] every time I visit, how much have I progressed? He told me last time, yes, there has been some minor progression. To me, that is good to know. I can picture myself, what is he seeing that I’m not? Since he’s telling me, I’m focusing on some things I need to be aware of. When there’s a lot of progression, I’ll say, okay, it’s time to make some changes, give up some things. I like being aware of things in advance.

Being Patient: Can you tell me the role faith has played in living your best with a diagnosis?

Chris Tann: I look at life differently now, totally differently. I see colors differently. They look beautiful. I go fishing a lot, by myself. She doesn’t like me to go by myself. I’m out in the lake and it looks beautiful. Seems like I was missing something and now it’s revealed in a whole different dimension. It’s all because of Him.

“I look at life differently now, totally differently. I see colors differently. They look beautiful.”

Being Patient: Debra, can you tell me what could be helpful to other caregivers in terms of how you have lived with Chris’s diagnosis and your outlook?

Debra Tann: This is no easy journey. It is extraordinarily difficult. But if I can do it, you can do it. Don’t place yourself on an island. There are resources, support groups, memory cafes, organizations such as Association for Frontotemporal Dementia, who want to give you money as caregivers to take care of yourself annually. Please, just reach out. People will meet you where you are.