Deep Dive: What if It’s FTD?

Summary

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Podcast Summary: Deep Dive: What if It’s FTD?

Podcast: Dr. Laura Call of the Day
Host: Dr. Laura Schlessinger
Guests: Sue Freund and Esther Cain (MSN, RN, CDP, Director of Support and Education at AFTD)
Date: October 2, 2025
Theme: Understanding Frontotemporal Degeneration (FTD) through personal experience, expert insights, diagnosis journey, genetic risk, caregiving, family impact, and resources.

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Episode Overview

This episode dives deep into Frontotemporal Degeneration (FTD), a little-known but profoundly impactful form of dementia. The discussion is anchored by personal testimony from Sue Freund, whose husband Billy died of FTD at 58, and expert insights from Esther Cain, Director of Support and Education at the Association for Frontotemporal Degeneration (AFTD). Together with Dr. Laura, they unravel the complexities of FTD: early warning signs, diagnosis, genetic risk, the unique emotional toll on families, and pathways to both practical and emotional support.

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Key Discussion Points & Insights

1. Personal Story: When Subtle Changes Signal Something More

[04:00–14:40]

• Subtle Behavioral Shifts:
  Sue describes how her husband Billy’s personality and habits changed in his early 50s, well before anyone suspected dementia.
  • Became “very self-absorbed,” lost empathy, demonstrated compulsive behaviors (e.g., driving around the neighborhood blasting music), made inappropriate comments, and showed a decline in personal hygiene.
  • The initial suspicion: midlife crisis, depression, or even an affair.
• Detection and Diagnosis Journey:
  • Friends and even Sue’s children noticed something was wrong but didn't suspect dementia.
  • A family friend, a physician, directed Sue toward FTD after consulting with a neuropsychologist ([08:32]).
  • Confirmation required neuropsych testing, MRI, and CT scan—Billy never believed he was ill.
• Emotional Toll:
  • The process was confusing and isolating, with moments of self-doubt and marital crisis.
    • “I thought maybe he was having an affair. I thought he was having a significant midlife crisis…it has to be a severe midlife crisis because he’s a complete stranger from the person that I met and fell in love with.” – Sue ([07:55])

2. Understanding FTD: Clinical and Medical Perspective

[14:50–18:49]

• Common Symptoms:
  • Loss of empathy, poor executive function, disinhibition, personality changes, and lack of self-awareness (anosognosia).
  • Not just memory loss: “Memory is not the issue, but their behavior.” – Sue ([11:44])
• Typical Denial:
  • Many FTD patients, like Billy, are unaware of their symptoms.
    • “A certain percentage of FTD…they don’t know they have it.” – Esther ([12:15])
• Progression:
  • Average lifespan after diagnosis is 7-10 years, but it varies (as short as 3-4 years, as long as 20).
    • “If it’s a slow progression with really slow changes…odds are it’s going to be a slower progression throughout the disease.” – Esther ([17:30])

3. FTD Can Affect the Young

[18:49–23:37]

• No Age Limit:
  • FTD can appear in people as young as their late 20s or early 30s.
    • “Dementia is not necessarily a diagnosis of the old. Our brain is an organ like any other organ in our body.” – Esther ([22:48])
• Major Types of Dementia:
  • Alzheimer’s, Lewy Body, Frontotemporal Degeneration (FTD), and Vascular Dementia.
    • “There are many different types of dementia…I’ve heard 120 or 200 types.” – Esther ([23:45])

4. Genetic Risk, Prevention, and Family Concerns

[24:17–28:11]

• Familial Patterns:
  • About 40% of FTD cases show a family history, and about 20% have a known genetic mutation.
• Prevention / Mitigation:
  • “Lifestyle factors play a big impact in improving people’s quality of life and can delay the onset of the disease.” – Esther ([25:37])
  • Recommendations: exercise, heart-healthy diet, limiting alcohol and processed foods.
• Genetic Testing:
  • “I recommend that all the children in the family learn is what I recommend…Genetic counseling and testing is a big step.” – Esther ([27:04])
  • Sue recounts her own family’s emotionally fraught decision around testing ([27:30]).

5. Diagnosis & Medical Pathways

[29:05–33:00]

• When to Seek Help:
  • Use diagnostic checklists, document symptoms, and bring notes to appointments.
• Recommended Specialists:
  • See a neurologist, preferably a behavioral cognitive neurologist or at an FTD specialty center ([30:57]).
• Differentiating FTD and Alzheimer’s:
  • Though there are new biomarkers, diagnosis was historically based on symptom patterns; they’re separate diseases caused by distinct proteins in the brain ([31:48]).
    • “It was really hard to distinguish…most of the diagnosis was based on the symptoms.” – Esther

6. Family Survival, Coping, and Isolation

[39:29–44:06]

• Initial Reaction:
  • “I was ready to divorce him because I thought he was having an affair…this wasn’t the man I married.” – Sue ([39:29])
• Family Adaptation:
  • After the diagnosis, Sue and her children shifted focus to love Billy as he was, creating new memories and trying to cherish time together.
  • “You have to meet them where they are each day, because, you know, one day is better than the next and—or it isn’t.” – Sue ([40:12])
  • The family kept the diagnosis private, which contributed to a sense of loneliness:
    • “It gets kind of lonely in the end...because when you say that your husband has FTD or dementia, they only hear dementia.” – Sue ([43:09])

7. What Families and Friends Can Do: Support and Resources

[45:42–47:37]

• Experience of Isolation:
  • “There’s just a sense of you’re drowning and there’s nobody there to catch you.” – Esther ([45:42])
• Finding Community:
  • AFTD offers helplines, resources, support groups, and community for those impacted.
  • “The biggest thing that you can do if you have a friend with FTD right now…Don’t pull away. Lean in. Go in, help them.” – Esther ([46:11])
• Helpline and Advice:
  • Reach out for community, information, and emotional support.

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Notable Quotes & Memorable Moments

• On the Shock of Early Symptoms:
  “He used to be interested in everything and everyone…And then he just started becoming very self-absorbed.” – Sue ([04:19])
• On the Difficulty of Getting a Diagnosis:
  “Who’s ever thinking of dementia at 50 years old? You’re thinking it’s depression, midlife crisis, bipolar—you’re thinking everything other than, oh, my goodness, my husband has dementia.” – Sue ([09:23])
• On Family Shift:
  “You pivot from being mad at him and wanting to desert him to wanting to create new memories…and trying to live life the best way we could.” – Sue ([41:02])
• On Living with FTD:
  “Until there’s a cure, there’s care, right? So, how are we going to approach it?” – Esther ([16:33])
• On the Importance of Community Support:
  “Show up, show up with cake, show up with flowers, show up and just say we’re here and be present. Don’t judge.” – Esther ([46:23])
• On Hope and Optimism Amid Grim Circumstances:
  “If I can go through my day knowing that today I was able to walk with somebody, then that’s good and there is hope.” – Esther ([48:54])

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Timestamps for Key Segments

| Time | Segment & Highlights | |-----------|----------------------------------------------------------------------------------------------------------| | 01:55 | Introductions and episode overview by Dr. Laura | | 04:00 | Sue recounts the first signs of FTD in her husband | | 07:22 | Timeline of symptom progression and family reaction | | 08:32 | Friends and doctors begin to suspect FTD | | 10:26 | Testing and the shock of diagnosis | | 14:50 | Clinical explanation of common symptoms and denial (anosognosia) | | 16:27 | Management and progression expectancy | | 18:49 | FTD’s prevalence among the young; not “an old person’s disease” | | 23:45 | Different types of dementia | | 24:17 | Genetic and familial risk; prevention steps | | 27:27 | Sue’s family experience with genetic testing (stress, choices, implications) | | 29:05 | How to seek a diagnosis, what kind of doctor to approach | | 31:48 | Distinguishing FTD from Alzheimer’s and why testing matters | | 34:38 | Frontal lobe injury vs. FTD | | 39:29 | Sue’s candid thoughts on family experience, guilt, and coping | | 45:00 | How people with FTD typically pass away (medical, hospice, at-home care) | | 45:42 | Emotional support, AFTD helpline, and “leaning in” as community/friends | | 50:11 | Closing advice from Esther: No one has to face FTD alone—reach out for support | | 50:56 | Support group impact for families, including special groups for young caregivers |

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Resources & Further Support

• AFTD (Association for Frontotemporal Degeneration):

  • Website: https://www.theaftd.org
  • Helpline: 877-507-7222
  • Support groups, information, resources for those diagnosed, caregivers, families, and friends.

• Key Advice:

  • Don’t ignore subtle behavioral changes, especially in midlife.
  • Seek specialist evaluation if FTD is suspected.
  • Get support—don’t handle the journey in isolation.
  • For friends and community: Don’t pull away—lean in and offer support.

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This episode is a powerful, compassionate resource for anyone touched by FTD, as well as those seeking to better understand the nuanced challenges of dementia in adults under 65. The intertwining of raw personal storytelling and authoritative clinical insight makes the message both hopeful and pragmatic.

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Transcript

[Dr. Laura Schlessinger]

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[Dr. Laura Schlessinger]

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[Dr. Laura Schlessinger]

As you may know, one of our peeps and a dear friend at this point, Sue Freund, who is our wonderful head of Sales here at the radio program, lost her wonderful husband Billy Freund earlier this year due to ftd. I told Sue I would like to be of help spreading the word about frontotemporal degeneration awareness because it was a big surprise. He was young, handsome, brilliant, charismatic, fabulous guy. They had a love relationship that people could only dream about. So sue joins me along with our special guest spokesperson, Esther Cain, who's an MSN rn cdp. I know what the RN is. Everything else I'm lost. Joined AFTD as its Director of Support and Education in November of 2020. Previously, Esther served as Director of Wellness at Care One Management, a company that provides elder care services through the Northeast United States. She brings clinical, educational, managerial and marketing skills. Do you ever sleep? Along with a passion for quality care for those who are living with neurological conditions, her work reflects a very strong commitment to the importance of education and training throughout the spectrum of diagnosis, which seems not to be easy to do with this disease and delivery of quality care in her role, Esther ensures that AFTD's support services and educational programs advance early diagnosis and improve access to care and support, and ensuring that clinical information provided to health care professionals in the AFTD community is current and accurate. I appreciate that, and thank you both for being here to help people with this. I would like to start, if it's okay with you, Sue.

[Sue Freund]

Okay.

[Dr. Laura Schlessinger]

I know that even to this day, it's upsetting. I get upset watching you be upset. But I'd really like you to talk about. Everything was going wonderful. Everything was great. Terrific guy, happy marriage. And then slowly but surely, something started to happen. What was the something?

[Sue Freund]

So the interesting thing for me is I started noticing just subtle changes in Billy when he was 50. So he died at 58, but we had been married at that point 28, 22 years. And he was the love of my life, my best friend. And I just started noticing these subtle changes in his behavior. And I wrote some of the stuff down, because when it's happening, none of it seems like a lot. It just seems all like little things that all of a sudden, the love of your life has become this stranger. He used to be interested in everything and everyone. I mean, he could enter a room and just light it up, and he would make you feel, like, wonderful. And then he. He just started becoming very self absorbed. Sorry. He started doing compulsive things, like driving around the neighborhood. Like, he always wanted to just go drive around the neighborhood and listen to loud music and sing. And we live in a small community in California, and people would call me, and they're like, we just saw Billy pass past, driving around with loud music playing and singing. He told me, like, in the beginning, he'd come home some days and he would say, I feel so depressed. I feel depressed. I started reading on the Internet. I think my serotonin levels are down. But then, you know, his empathy or things that he used to do, like, tell me I was pretty. He never. Those things went away. Like, one day he came home and he said, you know, you're not fat like your friends. And I was like, what? That was just something Billy would have. Would have never, ever said. When we would go to restaurants, the old Billy would have treated everyone with incredible respect. Would not have cared where we sat. Would have left the largest tip. He then became this person when we walk into a restaurant. He didn't like any place that they sat us. He would sit there and use his iPhone to calculate the tip. Exactly. He treated the. The servers rude, which he never did. And he started not asking anybody about themselves and being very self absorbed. The other thing I noticed was his hygiene, even the way he smelled, started to change. And I thought, what in the world? Like, this is a man that, you know. You know, when you first have that passion, you fall in love. You love their smell. That's part of. Part of it. And I didn't even. I couldn't understand the smell. And then I started realizing that, you know, he wasn't putting his dirty clothes in the hamper. He was folding his underwear back up and putting them in the dresser, or he was hanging his shirts back up. And this is a man that used to, you know, to the day he died, dressed impeccably, but you couldn't convince him.

[Dr. Laura Schlessinger]

So what you're describing, what was the period of time?

[Sue Freund]

So this went on for a good two years where my friends, our close circle, and myself and my kids at that point, my son was. My daughter was a senior in high school, and my son was. He was in eighth grade. And we all were just like, something's wrong with dad. Our friends would come over for dinner parties, and they would be like, something's going on with Billy. It's either a midlife crisis.

[Dr. Laura Schlessinger]

What did you. What did you think at that point was going on with Billy?

[Sue Freund]

I thought maybe he was having an affair. I thought he was having a significant midlife crisis. And I thought. I wasn't sure because I thought, this has to be a severe midlife crisis because he's a complete stranger from the first, from the person that I met and fell in love with.

[Dr. Laura Schlessinger]

So in the two years that this was evolving, at what point did you and he and the kids seek outside help to have what turned out to be the correct, sadly, the correct diagnosis?

[Sue Freund]

So the interesting thing is I went on a trip with my own parents, who were healthy at the time. And they took me aside and they said, what is going on? Because they hadn't been with us in a while. And they said, he's a shell of himself. This is not the same man. So when I came home from the trip, I was telling my friend again, who was a doctor, who was a close friend with us, like, my parents are thinking the same thing as me. Like, I have to get a divorce. So she decided to go talk to her neopsych doctor within the hospital. She was chief of surgery. And he said to her, fortunately for me, he said, you need to get him tested for ftd. Now, she was a general practitioner surgeon. She had no idea what this man, this doctor, you know, head of Neo Psych was talking about. She went on the Internet and started reading it and was like, oh, my gosh. A lot of this is what we've been experiencing with Billy because she had been a family friend of ours for 10 years. So she came over that night and she said to me, you need to go check out this website, the aftd.org and Dr. Laura. I went on that night, after Billy and I were both in bed, I started to read everybody's story. And before I even got officially diagnosed, I knew from reading the stories, oh, my God, this is. This is what he has. Because, you know, when you read everybody's story, which I would encourage everybody to do, especially if you're sitting there with somebody that's, you know, at any age, which Esther can talk about, because it hits. But who's ever thinking of dementia at 50 years old? You're thinking it's depression, midlife crisis, bipolar. You're thinking everything other than, oh, my goodness, my husband has dementia. The hard thing about.

[Dr. Laura Schlessinger]

Bring it to his. Did you bring it to Sue? Did you bring it to his attention at that point and go with him for.

[Sue Freund]

I said to him, we have to go to ucla. We have to get you tested. There's nothing wrong with me. There's nothing wrong with me. He kept saying that over and over again. When I finally got the appointment, which it takes a while to do, that morning when I walked in, he was covered under the covers like a little child. He did not want to get out of the bed. I said to him, you have to go to UCLA with me. He said, I don't want to do that. And at that point, he had had anger bouts. I told him I was going to get a divorce, this and that. I said to him, you have to go, Billy. Otherwise I'm just going to divorce you, because I have to find out what really is going on. So I drug him all the way to ucla, and. And then the first thing they do, which Esther can tell you, is they put you through, I guess, an executive functioning test where he had to pick animals out and things like this. And when I sat there and saw how little he could actually do, I was completely in shock because this was a man who was still working, still had a career, and. And there were just. I mean, Esther can tell you more what the first tests are, but it's like, pick the animals out. And if you asked him about memory, he could tell you everything. Memory is not the issue, but their behavior.

[Dr. Laura Schlessinger]

Right, Sue?

[Sue Freund]

Yes.

[Dr. Laura Schlessinger]

At that point, did the physician tell Billy the diagnosis.

[Sue Freund]

So at that point, no, they can't. So they. They say to you, it looks a lot like ftd, but they can't officially, and Esther can be more clinical about this than me. They can't tell you cfd.

[Dr. Laura Schlessinger]

What was. What was Billy's reaction to the testing?

[Sue Freund]

So. So the interesting thing with Billy, when he couldn't do it, it was almost like he didn't under. He didn't realize he couldn't do a lot of the things like put the. Put the hands on the clock. Which ones are these? So she pulled me out and. And he left. He went out of the room to go to the restroom. And she said, I guarantee, I think it's ftd, and there's a certain percentage of FTD that they don't know they have it. She said, we won't be able to officially diagnose him until you get a CT scan at first, an MRI and then a CT scan, and then Esther can tell you how that works. So we left. And she said, but I don't think he doesn't know he has it. So even trying to tell him he has it, he continued to say, nothing's wrong with me. Nothing's wrong with me. And we left. And then it took us. You know, I think the mri, I think, is the first test that they gave us. They called us back and said, yes, they see shrinkage in the frontal temporal part of the brain, but they have to really see with the CT scan the pattern to officially diagnose. So that all took about six months, and then he was officially diagnosed. When they told me that he was diagnosed, he was sitting there with me. He got up from the Zoom, because at that point, it was still during COVID He got up from Zoom, and when he got up, they said, sue. He. He does not know and will never know he has it. And this is what you're up for. So then one of the other questions is, you know, the financial burden. So they said to me on. And this is why I think the AFTD foundation or the.org is so good to go to. They don't give you a lot of resources at the hospital, but they do tell you get your affairs in order, because when you have ftd, if. If these of access to money, your spouse, they've made bad judgment decisions.

[Dr. Laura Schlessinger]

And.

[Sue Freund]

And that was definitely the case with Billy. You know, he had. He had been investing in companies that he thought were real. But one of the things with FTD is your judgments off. And all those companies were shams, you know, so so he officially got diagnosed in 2019, and then his journey with it ended this in March.

[Dr. Laura Schlessinger]

So we lived with him for a while. So, sue, he never understood what was.

[Sue Freund]

Wrong with him, never knew to the day he died. He thought he was working.

[Dr. Laura Schlessinger]

Oh, yeah.

[Sue Freund]

He thought he was still running the company.

[Dr. Laura Schlessinger]

Esther, is this typical? Is this a story you hear a lot?

[Esther Cain]

I really wish that Sue's story was unique. I wish that this is the first time I've ever heard this in ftd. But unfortunately, this is a very common story that we hear from families and people impacted by the disease. What Sue's talking about is a symptom called anosognosia, or sometimes we call it lack of insight. And the symptoms of FTD really can lead to this just inability to really understand what's happening to you or that you have something changing or happening. So the main symptoms of the disease, which is loss of empathy, executive dysfunction, disinhibition, and they all kind of mix together. It's almost as if the symptoms are making it so the person just doesn't realize what's happening to them or feeling what's happening to them. And this can be extremely difficult for families to face. As Sue's talking about, have you ever.

[Dr. Laura Schlessinger]

Dealt with any patient situations where the patient did understand?

[Esther Cain]

So this isn't true of every person with ftd, And I think that's really important to highlight and understand. There are some people with FTD who have this symptom, and there's many people who are very aware that they are diagnosed. You know, on our helpline at aftd, we have people who've been diagnosed with FTD who call every day looking for support and information and tools to help them manage the disease. So although this doesn't happen in every case, when it does happen, it's really, really hard.

[Dr. Laura Schlessinger]

And how do you manage an incurable disease?

[Esther Cain]

You know, I think until there's a cure, there's care, right? So how are we going to approach it? We don't right now have a cure for ftd. There are currently clinical trials happening for some of the genetic forms of the disease. But until we get a cure, we really need to figure out how to best care for these families and support these families. So whether it's through connecting them with other caregivers who understand what they're experiencing, helping them figure out how to match, manage the legal and financial issues. Looking at the role of rehabilitative therapy, can we bring in speech therapists, physical therapists, occupational therapists to help the person diagnosed be able to live the best quality of life that they can while they're living with the disease. But even in the midst of all of that, that's not a cure. And the disease is still progressive.

[Dr. Laura Schlessinger]

And generally, how long from starting to see symptoms to passing away, typically, what is that time span?

[Esther Cain]

So we say on average the lifespan is seven to 10 years after, after diagnosis. But we have to realize that some people take a really long time getting an accurate diagnosis. Some people get diagnosed sooner, which can make it a little bit of a different journey. And the journey can really be different for every person impacted. So I know people who've had the disease for 20 years. I know people from first symptom onset to passing, it's three or four years. So typically what we say is how quickly it's progressing is how quickly it's going to progress. So if it's a slow progression with really slow changes, odds are it's going to be a slower progression throughout the disease. If things are happening rapidly and changing quickly, you're going to have a more rapid progression. But there's still a lot we need to learn about the disease and how it affects, how it affects the person and why some people are more progressive than others.

[Dr. Laura Schlessinger]

When did they first get discovered? I'm sorry, Go ahead, Sue.

[Sue Freund]

I was just saying too, it's, I think Esther should touch on how young there's, there's people in their 30s that are diagnosed with FTD. It is. Esther, can you speak a little bit about that? I mean, it's not an old person's disease. I mean, that's, I think what's shocking about it because it is dementia. Can you speak a little bit about that, Esther?

[Esther Cain]

I can. I mean, I can use.

[Dr. Laura Schlessinger]

I'd like you to do that, but I have to. Esther, I have to take a break.

[Esther Cain]

Go ahead.

[Dr. Laura Schlessinger]

Do those things. So let me take a break and come right back with you answering Sue's question. Thank you very much. We're going to take a break and hang in there. We'll be right back.

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[Dr. Laura Schlessinger]

We are focusing in on fronto temporal and and sue made a very important point before the break and that's what I want to come back to. And that is this hits people very young. So Esther, why Where'd this come from? I thought just as you got older, your brain disintegrated. What is this at 30? How does that happen?

[Esther Cain]

So FTD really occurs from proteins that are gathering and the frontal and temporal lobes of the brain. That can happen at any time. So just because we typically see dementia in older individuals. Dementia is not necessarily a diagnosis of the old. And I think it's really important to understand that our brain is an organ like any other organ in our body. And when it starts to fail, we start to see symptoms that look like our dementia type symptoms. FTD in particular can affect people. We know people who are as young as in their late 20s, early 30s who have been diagnosed with FTD all the way up till 80s or 90s. It really isn't specific to an age group, although most people, the symptoms start between the ages of 40 and 60. And so.

[Dr. Laura Schlessinger]

How many types of dementia are there? I mean, people can be pretty lost in this sea of diagnoses. Which one do you have?

[Esther Cain]

Yeah, I mean, there are.

[Dr. Laura Schlessinger]

How many are there?

[Esther Cain]

There are many different types of dementia. I've heard 120 different types of dementia, 200 types of dementia. But the four main types of dementia that we see are Alzheimer's disease, Lewy Body dementia, frontotemporal degeneration, and vascular dementia. Those are the four most common that occur in most individuals. And even Alzheimer's disease can be young onset. We know people with Alzheimer's disease who get the disease at a much younger age.

[Dr. Laura Schlessinger]

Wow. Well, we have questions that were sent in and if you gals could answer some of these. This is from Rebecca. My sister's husband was recently diagnosed with FTD at 62. He had symptoms, though, for six years. His family has a history of dying from some form of dementia or Alzheimer's. His mother is dying from Alzheimer's. Her two sisters died from it, their mother died from it. I'm concerned that this is now familial. My sister has five kids with her husband. What steps could these children be taking now to prevent the disease?

[Esther Cain]

Yeah, so there's a lot of research looking right now at familial FTD. About 40% of the time, FTD tends to run in people's families. There's a family history of either dementia, a psychiatric pediatric diagnosis, a movement disorder like Parkinson's or ALS. And about 20% of the time or half of those cases, there's a known genetic variant that is causing the disease. And so it's being caused by a gene that is making the disease happen in the brain. And so this is a valid concern. We talk to a lot of families who have questions about this, but there are some things that can be done early. You know, I think talking to a genetic counselor is always the best step. Learn, talk, understand what's happening in the disease. Understand what's happening with the genes. Don't rush into it, because there are some people, even with a family history who go to genetic testing and they. It's not genetic. That was never the case. We don't know what's causing it. It's what we call sporadic ftd. But, you know, for those who do have genetic ftd, there are things that can be done, like family planning, legal and financial planning, how you're setting up your future. We know that lifestyle factors play a big impact in improving people's quality of life and can delay the onset of the disease. It's not going to.

[Dr. Laura Schlessinger]

What factors are those? What factors are those?

[Esther Cain]

So running or exercising, eating a healthy heart, healthy diet, limiting your alcohol content, limiting your sugar content, and processed foods, all of those things have shown to have a positive benefit on our brain health. And this last year, a really big study came out in the Alzheimer's space talking about the benefits of healthy living to help protect our brains in ftd. The research is new, and we're just starting to really understand how these lifestyle factors can impact an FTD diagnosis. But the beginning research that we're seeing, and the information is really promising now.

[Dr. Laura Schlessinger]

Would you recommend that all the children get genetic testing?

[Esther Cain]

I recommend that all the children in the family learn is what I recommend. I think genetic counseling and testing is a big step, and so I'll let you talk more about this. But I do think that we want people to learn. We want them to understand. We want them to talk to a genetic counselor to understand their options and what they're getting into. And if it's right for them, they should pursue genetic testing.

[Dr. Laura Schlessinger]

So you're going to say, yeah, I.

[Sue Freund]

Think with us, we decided to move forward with the genetic testing because that my daughter was getting ready to get married and start her own family. My son, he kind of was frozen. Didn't know. He wanted to know, did we have this in our family with Billy, he. Fortunately, we went ahead and moved forward, which I think was the longest, stressful period to get the genetic testing back with Billy. His was not genetic, fortunately, I guess, but it was. But you really go through a lot of soul searching if you want. My daughter didn't want to get the genetic testing my son did. So, you know, it's very, I think, specific to your own journey, really.

[Dr. Laura Schlessinger]

What was your daughter's concern that led her to the decision of not knowing?

[Sue Freund]

I mean, we all just ultimately decided to test Billy, you know, and I think if Billy would have come back, he came back negative. So Then they didn't need to get tested. But I think because she had already. She had already met her. So if he would. But if. I think if Billy would have been positive, I don't know if she would have been tested because her. She was now engaged, and her fiance said, it doesn't matter to me if you have this gene or not, because I don't even know. And that's where the genetic, I think, counseling comes in. It doesn't even mean for sure that you're going to get it correct, Esther, even if you do have the gene. So there's a lot to learn about the genetics testing with it, I mean, I think. But we didn't have to go to that step because Billy came back negative.

[Dr. Laura Schlessinger]

With so letter from Susan. She thinks her husband has the symptoms of ftd. She wants to know how to get him to a doctor.

[Esther Cain]

We hear this a lot from families, and this is one of the struggles, you know, specifically when there's anosognosia present. And it's scary. I think for some people, even if anosognosia isn't present, they know something's wrong. They know something's changing. And the idea of going to a doctor can be really scary. I think sometimes some families have taken the approach of, we might be able to do something to make you feel better. So if we go to the doctor, they might, you know, maybe it's the symptoms aren't. Maybe it's not an ftd. There are other things that could be happening that could be causing you to have confusion or memory loss or changes or things happening. We really want to know what it is so we can make you feel better and do the best. Sometimes that works, sometimes it doesn't. Sometimes it works to kind of say, okay, then go prove me wrong. You know what? You're right. Go prove me wrong. You're perfectly fine, and you go do it. Sometimes that works, depending on what's happening with the symptoms. But I think for most families, they end up having to kind of go through a toolbox of trying to figure out what's happening. You know, we really recommend when this is present, that you write down everything you're seeing. AFTD developed these diagnostic checklists, which are kind of tools where you can kind of see the symptoms and layman's terms, but on the other side is the diagnostic criteria for the clinician. And this can kind of allow you to say, these are the symptoms I'm seeing. These are the things that are happening. Can we get a further diagnosis? Can I tell you what we're seeing and what we're happening at home. Before the appointment, some families will write it all down and email it to the doctor before they go. Some will have a phone call.

[Dr. Laura Schlessinger]

What sort of, what sort of doctor should they go to? Not an internist?

[Esther Cain]

No. They need to go to a neurologist. And if they can go to a behavioral cognitive neurologist, and even better if they can go to an FTD specialty center. There are only so many FTD specialty centers around the country, but you can find them on our website. And these are centers with FTD specialists that can really help diagnose and help. But the waiting lists are long to get into these centers. So for some families, they'll see memory clinicians in their community. A lot of hospital systems have memory and cognitive centers that can be good places to go for a diagnosis as well as if you have to just go to a regular neurologist, go armed with the information and the support that you need.

[Dr. Laura Schlessinger]

What is the, let's see, Susan asks, what's the difference between Alzheimer's and ftd? How are they different? How can a doctor tell if a patient has one or the other?

[Esther Cain]

You know, sometimes they can't. So now today in this time, we have better biomarkers to know if it's Alzheimer's or not. But five years ago, if somebody was diagnosed, the doctor might have said it was Alzheimer's and it could have very well have been ftd. So up until very recently, until we had these biomarkers in the Alzheimer's space, it was really hard to distinguish. And most of the diagnosis was based on the symptoms. What are the symptoms we're seeing? Is it affecting the frontal and temporal lobes or is it affecting more memory, which happens in the hippocampus? So understanding that is really important. Alzheimer's, ftd, Lewy bodies, they're actually all caused by different proteins and different things in the brain. So it's important to understand what is happening and what are the proteins in their brain, because they're really the targets right now that science is looking at to say this is how we're going to get to a disease modifying therapy. So if a person has ftd, we're going to need to treat that differently than we're going to need to treat somebody with Alzheimer's. And right now, in the Alzheimer's space, there are some disease modifying therapies that have been approved, but they're not necessarily beneficial for somebody with FTD because we're not dealing with the same underlying problem.

[Dr. Laura Schlessinger]

The proteins you Mentioned are those already located in the brain or those proteins coming from elsewhere in the body?

[Esther Cain]

They're not coming from elsewhere in the body. They're being formed in the brain. Why? We don't know. We don't know what's causing them. We don't know why they're happening. Sometimes it's happening because of a. A gene that's causing these proteins to be formed. And then about 60% of the time, we don't know why. And we're looking, we're trying to understand, is it environmental? Are there factors in the water we're drinking? Are there factors in the pesticides being used? Is it other things that are causing it? Is it lifestyle factors? Was it, you know, were they a football player? Did they have consistent head trauma? We don't fully understand why this disease occurs in a large section of the FTD community.

[Dr. Laura Schlessinger]

Lorna wrote after an MRI neurologist indicated my husband had a frontal brain injury. Is that gonna cause ftd?

[Esther Cain]

It shouldn't cause ftd, but you might be seeing symptoms that are very similar. So if you're gonna have a frontal lobe injury and ftd, the symptoms might look very much so the same. The big difference between FTD and frontal lobe injury is what's causing it to, as well as what, how is it progressing. So treatments that we might have for FTD may not be helpful for frontal lobe injury, but the frontal lobe injury could progress into an ftd. So it's hard to tell what that's going to look like and what's happening. Our brains are really complicated, and we don't really fully understand them the same way we do the other organs in our body.

[Dr. Laura Schlessinger]

I'm going to take a break. When I come back, Sue, I'd like you to talk about how a family survives this. I mean, according to Esther, this could go on for 20 years. How does a family, how does a wife, how does a husband. How do children survive this without guilt and fear and exhaustion, frustration? What does a family do? So we're going to take a break and come back, and I'd like you to address that, if you would be so kind. All right, thank you. Take a break. Come back right here. Don't leave us.

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[Dr. Laura Schlessinger]

This entire hour on FTD fronto temporal I hate Using the words that give me the creeps, degeneration, you know, friend of mine said, well, you know, I've gotten. I'm 75 now, so 60 was when FTD starts. So I dodged a bullet. And, you know, people tend to think at a certain age they're safe, and at a certain age, you're kind of lucky or not. And I'd like, Sue, if you could be so kind as to talk about on a personal level, I know this is very uncomfortable, but I think it'll help a lot of our listeners. At a personal level, what's it like to be the spouse? What are the hurts, the angers, the confusions, the guilt? And for your children, what did you all go through? I'd like you to speak to the spouses and families and tell them what to anticipate, what you experienced, and how you deal with the guilt and the rest of it.

[Sue Freund]

So I think that, you know, where I was in the journey right before Billy was diagnosed, I was ready to divorce him because, you know, I thought he was having an affair. I thought that he was having a severe midlife crisis and that this was the new man, and it wasn't the man I married. And then you get the diagnosis, and, you know, I had to sit down with the kids because he wasn't having an affair. I wasn't getting divorced. And you realize that the person, not only that, your husband, but that's also your father, the father of your children. And incidentally, your kids just don't like the person that they've become because they're so unknown to them and their behavior, they can't explain it. So I had to remind them that, you know, he doesn't even understand this is happening to him, and we have to love him as he is. I mean, and what's interesting, as you move forward in the journey, you have to meet them where they are each day, because, you know, one day is better than the next and. Or it isn't. It depends on the behavior and where he is in that particular day. Because it changes, you know, from day to day. I mean, even when they first diagnose it and they give. Give you some type of medicine, it seems to help a little bit. But I think the kids and I just sat down and, you know, we just started to think, okay, we have to, you know, this is the person that we love, both from a husband and a. Your dad. And, you know, we have borrowed time with him. We don't know how long our journey is going to be with him. So we Pivoted from being mad at him and wanting to desert him to. To wanting to create new memories with him and trying to live life the best way we could. I think the. And I think the person that had probably the hardest time with it was my son, because he was the youngest. And, you know, ftd, when. As it progresses, you know, Billy would follow my son around the house and, you know, Larson would get so mad at him, but he wasn't trying. You know, it's just part of the disease. And, you know, it's hard for you when you're young to understand that, but I think the best thing, as we moved forward, as we tried to realize, you know, I. I got really sad for a while because you. You know, you so miss the person that they were, you know.

[Dr. Laura Schlessinger]

Yeah.

[Sue Freund]

But then, you know, with Billy, there was the anger portion that he had before he was diagnosed, and then the way his journey was at the end, he became more childlike. So then we just. He was more our child than he was my husband. So we just decided to meet him wherever he was through the process and just try to create, you know, incredible memories for the four years that he still lived. And so that's what we did. We tried to travel with him, which. Which gets difficult, but what we did was continue to still live our lives and try to keep it as normal as possible. It just. I think the only thing we did that was pulled away from a lot of our friends. You know, we didn't go public with what he had. We decided to keep it more with just our close friends. Because when you say that your husband has FTD or dementia, they only hear dementia. So even as close as friends pulled away because they. They think that they won't remember who they are, which is not the disease. So it gets kind of lonely in the end. But I think the personal thing is, is that you realize that it's a disease. You know, it's. You're kind of relieved when you find out because you. You understand that you're not going out of your mind, because as it's happening to you, you're thinking, am I losing it? Like, what is going on with my spouse? And the kids were like, what is going on with their dad? I mean, and then once we all knew that it was a disease that he can't help, we just tried to meet him each day where. Where he was and make as much memories with him as we could before the disease he took him.

[Dr. Laura Schlessinger]

I think that's helped a lot of people listening right now. Thank you sue, you're just a love bun.

[Sue Freund]

Hope so.

[Dr. Laura Schlessinger]

That's a little personal, but sue and I love each other. Okay. Esther, what does the person finally die of? What causes them to pass?

[Esther Cain]

So it can depend. Sometimes it's just the disease progresses to the point where you're almost kind of going in reverse. So you stop eating, you aren't getting out of bed anymore, you don't have movement. Some people get pneumonia, some people start to get chronic infections. We can really vary from person to person. But ultimately, as the brain continues to have changes and have the degeneration occur, our brain controls everything inside of us. And so things just stop working the way that they used to work.

[Sue Freund]

Billy ultimately died from pneumonia. He died. Pneumonia.

[Dr. Laura Schlessinger]

Ah, now very common. Generally at the end. Are people hospitalized or are they living at home?

[Esther Cain]

You know, most people, I think, are still living at home or in facility care. They might be in like a long term care situation. It really depends. It's from family to family. It depends on resources, it depends on supports, it depends on how the disease is progressing. But some people have in home hospice, some people have facility hospice care. Some people don't take advantage of hospice care because they don't realize it's a benefit that they can take advantage of to support them during those stages.

[Dr. Laura Schlessinger]

And what kind of counseling does your organization provide or recommend?

[Esther Cain]

Yeah, I think that I'd like to actually start with the fact that, sue, you know, you were really talking about the isolation and being alone and how alone your family felt. And I think that that is probably the hardest part of this disease. One, you're losing a person, a person you love and you're deeply invested in. But then on top of that, you are alone. And when friends and family pull away, when your community pulls away, there's just a sense of your drowning and there is nobody there to catch you. And so I think more than anything, AFTD offers a community that says, we're going to put out our hand and we're going to hold your hand. We're not going to let you do this on your own. It's a group of volunteers, whether they're ambassadors or support group volunteers or other people impacted who just come together and say, we're going to do this journey together. And I think on top of that, there's. We do have a helpline. We have resources, we have supports from experts who work in the space who can provide support and information. But the biggest thing that you can do, if you have a friend with FTD right now, if you have a family or know somebody. Don't pull away. Lean in, go in, help them. Show up, show up with cake, show up with flowers, show up and just say we're here and be present. Don't judge. Don't choose to say because a person has dementia that they don't have. Not the same anymore. Choose to see the good and be a support. You don't understand the difference that that makes in families lives to know that they don't have to hide alone when they can be honest and share what's happening. And so, you know, I really encourage you, if you don't know how to handle it, call our helpline. If you're a family or friend, call the AFTD helpline and ask. I don't know how to lean in. I don't know how to provide support. What can I do? We're happy to provide you some tips and information, but people need community. We were made for other people. And when you're isolated and alone and already lost so much, we can stop that.

[Dr. Laura Schlessinger]

Have you had anybody in your personal life, professional life with ftd? Esther?

[Esther Cain]

I have not. Yeah, I work at aftd. I've spent my whole career working with people with dementia. But you know, I've been a caregiver who's an adult caregiver.

[Dr. Laura Schlessinger]

Ah, so what made you want to get involved with this?

[Esther Cain]

You know, I always worked with people with dementia. I kind of stumbled into it and right away I realized that they had more to offer than the world was giving them credit for. And so I really just got really passionate about seeing what people could do, what they could bring to the table, what joy could be produced with those with dementia. And that really drove most of my career. And being at aftd, I really get to see what can we do to help improve these families lives. So it's a real honor to be able to do what I do at AFTD and to be able to support these families and really try to break down the stigma, provide support, offer resources and information and try to improve the lives they're living.

[Dr. Laura Schlessinger]

How do you stay so positive? I mean, this is a horrendous disease. How do you stay so optimistic and positive once you go home and put your feet up?

[Esther Cain]

I think there's hope and I think we all need people. And if I can go through my day knowing that today I was able to walk with somebody, then that's good and there is hope. There's more hope than ever. There are clinical trials happening in FTD right now. We're making advances. There's more research there's more awareness. People getting up and standing and speaking about their experience is. It's changing the outcome just like sue did. Great job, Sue.

[Dr. Laura Schlessinger]

Sue, I think you wanted to say something.

[Sue Freund]

No, I was just, just, just laughing. No, just. Thank you, Doc, for doing this. I really appreciate it and hopefully it's helping people out there. And just please call. Esther and her team are terrific. They, they will point you in the right direction for any question that you have about ftd. And you'll also be able to read a lot of stories like mine on there. They're all, they have all had similar, similar stories or threads within the story, but I think that's same.

[Dr. Laura Schlessinger]

So Esther, some closing thoughts.

[Esther Cain]

Yeah, I just think that if you're being impacted by FTD right now, you don't have to do this alone. There is an organization out there to help reach out. Go to our website www. Call our helpline at 877-507-7222. You can email us, you can schedule a time to have a conversation with us. We're happy to talk. Join a support group. Don't do this alone. Find other caregivers who understand your journey and learn. Learn about the disease because that's the only way you're going to be able to tackle it.

[Commercial Narrator 4]

It.

[Dr. Laura Schlessinger]

Thank you. And, and sue had. Did you join a group? A support group.

[Sue Freund]

So that is, it's interesting. I had a support group through the whole process which, and that was through the aftd.org and they were wonderful. We were all sharing in the journey. We all had different. Either spouses, children or parents were in my support group of people with FTD. My daughter joined a 20 year old group run by two fabulous young ladies that are still in college and that helped my daughter out immensely through the journey. My daughter and I now go to the AFTD conference each year just to better understand and see how we can help create more awareness. So yes, I would encourage especially I think I was good at it. You're good as the spouse or the parent? I had some parents in my support group, but it took me a while.

[Dr. Laura Schlessinger]

I love you dearly. I'm almost off for the hour. Okay, bye. I love you dearly. Esther Cain, you were wonderful. Thank you so much for helping Sue. Lots of hugs and I'm sure we did a lot for your life. Now go do the right thing. If you like this podcast, be sure to rate it on Apple Podcasts or your favorite place to listen to my podcast. Of course, I'd love if you gave me five stars and be sure to share this podcast with a friend on Facebook or your preferred social media platform.

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